1

A PRELIMINARY INVESTIGATION INTO THE

DIFFERENCES BETWEEN THE HEALTH-RELATED

QUALITY OF LIFE OF PEOPLE WITH A DIAGNOSIS OF

DEMENTIA WHO LIVE IN THEIR OWN HOMES AND

THOSE WHO LIVE IN NURSING HOMES.

by

Lucy Hives (G20607933)

Submitted in partial fulfilment of the requirements for the

MSc. Health Psychology

Department of Psychology

University of Central Lancashire

July 2014

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CONTENTS

Abstract 4

Introduction 4-17

Introduction into Dementia 4-6

Types of Dementia 6-7

Concepts of Quality of Life 8-9

Health-Related Quality of Life in Dementia 9-11

Dementia-Specific HRQOL Tools 11-13

DEMQOL and DEMQOL-proxy 13-14

The Present Study 14-17

Method 17-24

Design 17

Participants 17-19

Materials 19-22

Procedure 22-24

Results 24-27

Descriptive Statistics 24-26

Inferential Statistics 26-28

Discussion 28-36

Residence and HRQOL 28-31

Respondent and HRQOL 31-32

Age and HRQOL 32-33

Gender and HRQOL 33

Dementia severity and HRQOL 34

Factors Affecting Carer-Rated HRQOL 34

Strengths, Limitations and Future Research 34-36

References 37-46

Appendices 47-69

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ABSTRACT

As the population grows older, the incidence of non-communicable diseases are

becoming more common (International Longevity Centre UK, 2011). The most

troubling of these is dementia (Alzheimer’s Society, 2014), and with the absence of a

cure, health professionals have switched their focus to improving the health-related

quality of life of this population (Moyle & Murfield, 2013). Employing a cross

sectional questionnaire design, the present study aimed to fill gaps in the existing

literature by comparing the health-related quality of life of people living with dementia

in two settings: own homes and nursing homes. In the ‘own homes’ group, 15 people

with mild to moderate dementia matched with their carers were recruited, as well as a

further 19 carers. In the ‘nursing homes’ group, 17 people with mild to moderate

dementia matched with their carers were recruited, as well as a further 22 carers. All

participants were asked to fill in a questionnaire (the DEMQOL for able people with

dementia, and the DEMQOL-proxy for carers). The findings disputed the research

hypotheses, as people living with dementia in nursing homes reported significantly

better quality of life than those still living at home. Nursing home carers were also

better able to predict patient quality of life than home carers (including professional

community carers and family carers). The findings present important implications for

people with dementia, who may face the decision of whether to stay at home or move

into a nursing home, as a result of their deteriorating condition.

INTRODUCTION

After receiving a diagnosis of dementia and the condition deteriorating, there comes a

difficult decision to make: whether to stay at home with extra support from home

carers or whether to move into a nursing home for full-time care (Alzheimer’s Society,

2014a). The National Health Service (NHS Choices, 2013a) states that it is good to

stay independent for as long as possible and that many people with dementia continue

to live successfully on their own for some time. With independence being the main

reason for staying at home (Alzheimer’s Society, 2014b), just how much is someone’s

life affected if they choose to move into a nursing home? The World Alzheimer’s

Report (2013) explains that there is still room for improvement in both settings, in

terms of providing people with dementia (and their carers) with information and

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support, ensuring that care is person-centred, and making sure that the person with

dementia is in control of choices and future wishes. The current study aims to

investigate the effects of life inside nursing homes, and looks at the differences in

health-related quality of life of people living in nursing homes, compared to those still

living at home.

According to the Guardian (2013a), there are 10 million people aged 65 and

over in the UK, and this is expected to double in the next 30 years. But, although the

population is surviving to an older age, people are living longer with a limiting illness

or disability (Centers for disease control and prevention, 2003), sacrificing their

quality of life. Particularly common in the elderly population is dementia, which is

more prevalent than cancer, strokes, and cardiovascular diseases (Alzheimer’s Society,

2014c). It is estimated that one in three people over the age of 65 will die with

dementia (Age UK, 2014).

The word ‘dementia’ is a descriptive term for over 100 different illnesses and

disorders which affect the structure and function of the brain (Alzheimer’s Society,

2014d). These illnesses can affect a person’s short-term memory and vocabulary

(Aggarwal, et al., 2003), motor functions, ability to identify and recognise objects

(Janssen Pharmaceutica, 2013) and also their ability to plan, order and carry out

abstract and everyday tasks (Lyketsos, et al., 2002; Thomas & O’Brien, 2002; Bond,

Corner, Lilley & Ellwood, 2002). Behavioural and personality changes, such as

emotional outbursts or mood disturbances, are also quite common (Sixsmith,

Hammond & Gibson, 2008; Harman & Clare, 2006). Although dementia costs the UK

economy £23 billion a year, which is more than the costs of cancer and heart disease

combined, dementia research is currently desperately underfunded (Alzheimer’s

Research UK, 2014). Fortunately, the UK government has now recognised the

escalating problem of the disease and is aiming to double funding into dementia

research by the year 2025 (The Guardian, 2013b).

According to the Alzheimer’s Society (2014e) there are currently 800,000

people living with dementia, in the UK alone. Although dementia is not exclusive to

older people, its prevalence rises with age (Wattis and Curran, 2001) and it is

estimated that 80% of people living in care homes have a form of dementia or severe

memory problems (Alzheimer’s Society, 2014e). Despite its prevalence, it is important

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to understand that, even in extreme old age, dementia is not a natural part of the ageing

process (National Health Association, 2014), and scientists are working hard to

discover preventative methods for brain diseases which may cause dementia, as well

as cures for dementia itself (Willey, 2013). However, with the absence of affective

treatments to date, health and social care providers have focussed their attention on

improving the quality of life of people with dementia (Alzheimer Society of Canada,

2009). Due to the prevalence of dementia, the costs to the UK economy and the

frightening symptoms that people with dementia can face, it is important that patients

receive the best care and support. The current study aims to see how quality of life can

be improved from the perspective of the person with dementia and their carers.

Types of dementia

The most common types of dementia are Alzheimer’s disease, Vascular

dementia, and dementia with Lewy bodies, respectively (Alzheimer’s Association,

2014a). Alzheimer’s disease (AD) is accountable for between 50-60% of cases of

dementia in the UK (Thomas & O’Brien, 2002; Wattis & Curran, 2001; NHS Choices,

2014b). AD is a result of changes in the structure of the brain and a shortage of

important chemicals, which can lead to the death of brain cells (Alzheimer’s Society,

2014f). Symptoms of AD usually develop slowly and gradually worsen over time

(Alzheimer’s Association, 2014b). In the early stages, people may experience memory

issues and problems finding the right words, then in later stages they may become

confused and frequently forget the names of people and places, experience mood

swings, become more withdrawn, and have difficulty carrying out everyday activities

(Alzheimer’s Association, 2014c). Towards the later stages, people may eventually

need help with all their daily activities for example with personal care, feeding, etc.

(Alzheimer’s Association, 2014c). So far, no single known factor has been identified

as causing AD, although general risk factors including age, diet, general health and

environmental factors can contribute to its development (Sixsmith, Hammond and

Gibson, 2008; Alzheimer’s Society, 2014f).

Vascular dementia accounts for around one-third of all cases of dementia

(North West Dementia Centre, 2005) and is caused by problems in the supply of blood

to the brain. To be healthy and function properly, brain cells need a good supply of

blood which is delivered through a network of blood vessels called the vascular system

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(Alzheimer’s Society, 2014g). If the vascular system within the brain becomes

damaged, brain cells will eventually die, resulting in the onset of vascular dementia. A

number of conditions (e.g. high blood pressure, heart problems, high cholesterol,

obesity and diabetes) can cause or increase damage to the vascular system (NHS

Choices, 2013a). It is therefore important that these conditions are diagnosed and

treated early to avoid the development of vascular dementia. Symptoms of the disease

often begin suddenly, for example after a stroke, and can include problems with

depression and anxiety, concentration and communication, memory, walking,

continence, and hallucinations (Alzheimer’s Society, 2014g).

Scientists think dementia with Lewy Bodies (DLB) may represent as much as

10 per cent of all dementia (Alzheimer’s Society, 2014h). Lewy bodies, are tiny

deposits of protein in nerve cells which cause several progressive diseases like DLB

and Parkinson’s disease. The presence of Lewy bodies are linked to low levels of

important chemical messengers (mainly acetylcholine and dopamine) and to a loss of

connections between nerve cells. Over time, Lewy bodies cause death of nerve cells

and loss of brain tissue. Symptoms of DLB are having problems with attention and

alertness, judging distances, perceiving objects in 3-dimensions, and auditory

hallucinations (NHS choices, 2014). Individuals may also experience problems with

movement, for example, slowness and rigidity, balancing and trembling of the limbs.

Dementia itself is progressive and terminal, however a person will typically die

from other factors which have been initiated or worsened by the dementia, rather than

dying from damage to the brain itself (Morrow, 2014). For example, falls and other

accidents, strokes, loss of appetite, malnutrition and dehydration, and Pneumonia and

other infections (Sixsmith, Hammond & Gibson, 2008; Morrow, 2014) are all

relatively common. Despite having medication to slow down the progression of

dementia initially or control some symptoms (e.g. Memantine, Risperidone and

Donepezil) there is currently no cure for dementia (NHS choices, 2013c). Therefore,

Health Psychologists and other professionals have been focussing on research aimed at

ensuring the best quality of life, and wellbeing (Ettema et al, 2005) for people

diagnosed with dementia and right through the progression of the disease. The need to

improve care for people with dementia is a matter of urgency (National Audit Office,

2007).

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Concepts of Quality of Life

Recently, research into dementia has focussed heavily on patient quality of life

and how it is achieved by care services (Sloane, et al., 2005). It has, however, proven

very difficult to define and measure quality of life, especially in degenerative diseases

like dementia, due to the deteriorating nature of the condition (Volicer & Bloom-

Charette, 1999) and the latency of the quality of life construct.

Figure 1: Revised Wilson and Cleary Model for Health-Related Quality of Life (Ferrans, Zerwic,

Wilbur, & Larson, 2005)

The World Health Organisation (1997) defines Quality of Life as:

‘An individual’s perception of their position in life in the context of the culture and

value systems in which they live and in relation to their goals, expectations, standards

and concerns’.

As a latent construct, quality of life cannot be measured directly. Instead, there are

often multiple domains which all contribute to a more detailed picture of quality of life

(Lam, 2010). To aid understanding, Figure 1, shows the multidimensional nature of

the concept of quality of life. In this model, Ferrans and colleagues (2005) propose

that both the features of an individual and their environment can affect five quality of

life domains (biological function, symptoms, functional status, general health

functions and overall quality of life). Each of these domains contribute to a person’s

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overall quality of life. As will be explained later, health-related quality of life has been

defined in many different ways, and a range of domains have been used to measure the

concept (Lawton, 1997).

In research, there are major debates about how to measure quality of life. Most

important of these is the debate on whether quality of life in a subjective or objective

construct. In the 1970s, subjective accounts of quality of life gained importance

(Campbell, 1976), meaning that the unique experiences of the individual alone were

determinants of quality of life. Campbell explained that experiences are perceived

differently by different people and it is therefore important to assess quality of life on a

personal level. Brod, Stewart and Sands (2000) agree that the subjective element is the

only true aspect of quality of life, and other aspects (e.g. environment, individual

function, and behaviour) are merely determinants of this subjective quality of life.

Lawton (1991) defined general Quality of Life (QoL) as:

‘The multidimensional evaluation, by both intrapersonal and social-normative

criteria, of the person-environment system of the individual’.

He later clarified that QoL should be measured by assessing the objective, as well as

the subjective factors, which have the ability to affect the psychological wellbeing,

behavioural competence and environment of an individual (Lawton, 1997). This, and

other writings by Lawton, highlight that quality of life has both an objective

component (what the person experiences and does) and a subjective one (how the

person feels about it) and concluded that quality of life would be best assessed from

multiple perspectives (Lawton, 1997). According to a review by Lauer (1999) most

researcher now believe that subjective and objective information are both important

when assessing quality of life.

Health-Related Quality of Life in Dementia

Health-related quality of life (HRQOL) focusses specifically on the aspects of quality

of life which can be affected by the health of an individual (Lam, 2010; Bullinger,

Anderson, Cella, & Aaronson, 1993). The main reason for measuring HRQOL is to

assess the effectiveness of healthcare services and to measure the outcome of health

interventions. In dementia, HRQOL focusses on relieving as much suffering as

possible so that people with dementia can live happy lives.

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Overall it is fair to say that research into the health-related quality of life of

people with dementia has been rather problematic. This is due firstly to the concept

being defined in so many different ways by so many people (Lawton, 1997). A range

of definitions has led to the development of a variety of different tools (Ready & Ott,

2003), each measuring a different set of items which are believed to contribute

towards overall health-related quality of life (e.g. self-esteem, social interaction,

behavioural disturbances, memory, financial situation, enjoyment of activities, etc.).

Because of this, it is very difficult to compare the results of studies which have used

different tools as they have, as a result, measured different concepts. Further, these

tools vary in terms of the measurement scales which are used (Brod, Stewart, Sands L,

& Walton, 1999; Logsdon et al, 1999; 2002; Ready et al., 2002).

It is widely accepted that subjective self-reported measures of quality of life

are the gold standard and the most reliable measures (Brod, Stewart & Sands, 2000).

However this must be questioned for a number of reasons in relation to people with

dementia. Firstly, subjective accounts are often impossible to obtain from people with

severe dementia (Smith, et al., 2005) who cannot respond or provide responses of

questionable validity. This is often due to a lack of memory, inability to concentrate,

lack of the capacity for introspection, inadequate or absent language skills, and/or

thought disorders (e.g. psychosis) (Lawton, 1994; Rabins, Kasper, Kleinman, Black, &

Patrick, 1999; Albert et al., 1996). This stresses the importance of objective measures

provided by carers, because these can strengthen subjective accounts and to provide

information on behalf of those who are incapable. It is perhaps surprising then, that the

majority of quality of life tools are designed with either only subjective measures in

mind, and so are only useful for people with mild to moderate dementia severity

(Brod, Stewart, Sands, & Walton, 1999; Selai, Trimble, Rossor, & Harvey, 2000), or

objective measures (Rabins, et al., 1999; Ettema, et al., 2007).

Some researchers have aimed to rectify this limitation, by designing proxy

tools. When the subjective world of a person with dementia is not accessible, proxy

reports from caregivers and health-care providers can provide important and valid

information on global quality of life, as well as specific characteristics, such as health,

function and behaviour (Buckley et al, 2012). Despite the success and necessity of

proxy quality of life measures, there is some evidence that proxy reports may include

measurement bias (Arons, et al., 2013). Studies have repeatedly found that when

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quality of life ratings are reported by both the person with dementia and a proxy,

proxy reports are significantly lower than the person with dementias self-report (Hoe,

et al., 2007; Hurt et al, 2008).

Dementia-Specific HRQOL Tools

The most widely used measures of quality of life in dementia are the Dementia

Quality of life instrument (D-QOL) by Brod and colleagues (1999), the Alzheimer’s

Disease-Related Quality of Life instrument (ADRQL) by Rabins and colleagues

(1999), the Quality of Life in Alzheimer’s Disease measure (QOL-AD) by Logsdon

and colleagues (1999; 2002) and the Cornell Brown Scale for Quality of Life in

Dementia (Ready et al, 2002).

The D-QOL (Brod, Stewart, Sands, & Walton, 1999) was developed following

a review of previous literature and interviews with dementia patients, caregivers and

professional care providers. The scale has 29-items which measure 5 quality of life

domains (Positive affect, Negative Affect, Feelings of Belonging, Self-esteem, and

Sense of aesthetics) on a 5-point likert scale , measuring levels of enjoyment, ranging

from ‘not at all’ to ‘a lot’. Each domain is kept separate and scored by calculating its

mean, with the option of including a global item if an overall quality of life measure is

required. The global measure, which asks ‘Overall, how would you rate your quality

of life?’, is scored on a 5-point likert scale ranging from ‘bad’ to ‘excellent’. With

respect to the aims of the present study, the D-QOL is unsuitable for a number of

reasons. Firstly, due to it being reliant on the person with dementia to answer the items

of the questionnaire, the D-QOL is only appropriate for use with patients in the mild to

moderate stages of dementia (Brod, et al., 1999). As well as this, with previous studies

reporting large variance in the internal consistency (Sloane, et al., 2005) and test-retest

reliability of the D-QOL (Bord, et al., 1999), its validity should be questioned.

The ADRQL (Rabins et al., 1999) was developed from the opinions of

caregivers of patients with Alzheimer’s disease and Alzheimer’s disease experts, as to

what is important for health-related quality of life in people with dementia. The scale,

which is answered by carers, consists of 40 items measuring both positive and

negative behaviours of the person with dementia across five domains (Social

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Interaction, Awareness of Self, Feelings and Mood, Enjoyment of Activities, and

Response to Surroundings). Carers must answer either agree or disagree to the list of

behaviours based on whether the person with dementia has displayed them in the last

two weeks. Although suitable for use with people with mild, moderate and severe

dementia, the majority of items on the scale measure observable behaviours and

actions, and therefore lack the gold standard subjective account of the patients’ self-

reported quality of life (Brod, Stewart, & Sands, 2000). Further, the scale was

developed using information from caregivers, and did not ask patients to contribute to

its formation (Rabins, et al., 1999). It therefore lacks insight from the patients’

perspective. The scale is reported to have adequate validity, good internal consistency

and low sensitivity to change (González-Salvador, et al., 2000; Lyketsos, et al., 2003).

These studies, however, are limited to people with Alzheimer’s disease living in long

term care facilities. It is therefore unclear whether the scale is adaptable for use in

home-care settings, or if it is appropriate for use with other types of dementia (e.g.

dementia with Lewy bodies or Vascular dementia).

The Cornell Brown Scale for Quality of Life in Dementia (Ready et al., 2002)

was developed by modifying the existing Cornell scale for Depression in Dementia

tool (Alexopolous et al, 1998). The tool consists of 19 items which are rated by

respondents on a 5-point likert scale ranging from -2 to +2. These items measure mood

related signs (e.g. anxiety, sadness), ideational disturbance (e.g. suicide, pessimism),

behavioural disturbances (e.g. agitation, retardation), physical signs (e.g. appetite loss,

weight loss) and cyclic functions (e.g. difficulty falling asleep, early morning

awakening) over the last month. Scores are added together to provide a total ranging

from -38 to +38. Negative scores indicate that negative ratings of mood, behaviour,

physical signs, ideational disturbance, and cyclic functions outweigh positive ratings.

The CBS combines proxy and patient perspectives and therefore satisfies Lawton’s

(1991), theory that quality of life is best assessed from multiple perspectives.

Assessment of quality of life with this instrument is limited to dementia patients with

sufficient ability to communicate their mood, symptoms and satisfactions (Ready, et

al., 2002). The reliability and accuracy of both carer and service-user accounts should

also be questioned, as the tool asks questions relating to the last month.

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Finally, the QOL-AD (Logsdon et al, 1999; 2002) was designed by conducting

a literature review of quality of life in geriatric populations. Researchers then asked

Alzheimer’s patients, caregivers, non-demented older adults, and dementia experts to

review potential items. The final scale is composed of 13-items that measure the

domains of a patients’ physical condition, mood, memory, functional abilities,

interpersonal relationships, ability to participate in meaningful activities, financial

situation, and also global assessments of self as a whole and quality of life as a whole.

Response scales consist of 4-point likert options (1 = poor, 4 = excellent) and total

scores range from 13 to 52, with higher scores indicating a greater quality of life.

Strengths of this scale are its brevity and that it relies on reports from patients,

caregivers, or both. The QOL-AD is however, only suitable for people with

Alzheimer’s disease.

DEMQOL and DEMQOL-proxy

The DEMQOL and DEMQOL-proxy measures (Smith, et al., 2005) were

developed using gold standard psychometric techniques. The researchers carried out a

literature review, and also interviews with dementia experts, people with dementia and

their carers. From this information they developed a conceptual framework of items

with the potential of measuring quality of life in people with dementia, and created a

preliminary version of the DEMQOL and DEMQOL-proxy questionnaires. These

questionnaires were then tested on large samples of people with dementia (n= 130) and

their carers (n= 126), in a variety of settings. From these studies, items with poor

psychometric performance were removed to produce two shorter, more scientifically

robust instruments. In a second study, the new questionnaires were assessed in terms

of their acceptability, reliability and validity. In this second test, the 28-item

DEMQOL was comparable to the best available dementia-specific HRQoL measures

in mild to moderate dementia, but was not found to be appropriate for use in severe

dementia. The 32-item DEMQOL-Proxy was found to be comparable to the best

available proxy measure in mild to moderate dementia, and also showed promise in

severe dementia. In addition, the DEMQOL system has been validated in the UK in a

large sample of people with dementia and their carers, and it provides separate

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measures for self-report and proxy report, which allows outcomes assessment across a

wide range of severity in dementia.

The Present Study

Based on the theory of the DEMQOL (Smith, et al., 2005) and the hypotheses of the

present study, Figure 2 was constructed:

Figure 2 the hypothesised concept of factors affecting health-related quality of life.

Figure 2 shows that Smith and Colleagues’ (2005) domains of ‘social relationships’,

‘self-concept’, ‘cognitive functioning’, ‘daily activities and looking after yourself’ and

‘health and wellbeing’ all contribute to health-related quality of life in people with

dementia. The dashed-arrows represent the hypotheses of the present study: that both

environmental factors and individual differences would affect health-related quality of

life, by their influence on these 5 domains.

Environment and quality of life

The first aim of the research was influenced by the emphasis that Lawton (1991)

placed on the environment. He stated that a person’s environment can affect their

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wellbeing and if the patient has to live in an institution, every aspect of their

environment will alter, possibly affecting their quality of life. Up to date there have

been numerous studies which look at the quality of life of individuals at home or

within nursing homes (Ballard, et al., 2001; Kane et al, 2003;Hoe, Hancock,

Livingston & Orrell, 2006) however, there are currently no studies which have directly

compared quality of life of people with dementia in each environment. The present

study therefore aims to fill this gap in the literature.

In a study of 244 people with a range of dementia severity, Andersen and

Colleagues (2004) found that a persons’ health-related quality of life was strongly

linked to their level of dependency and their ability to perform daily activities. As their

condition progresses, patients become more dependent on other people, and most may

then move into nursing homes for full-time care and assistance (Bullock & Hammond,

2003). It is therefore predicted that because level of dependency for people with

dementia is usually higher in nursing homes, health-related quality of life will be

better in people who are still living at home (who are still rather independent).

Respondent and quality of life

Previous research, which has compared patient and proxy reports of people

living at home with dementia, has found that carers usually report a lower quality of

life than the patient themselves (Sheehan, et al., 2012; Albert, et al., 1996; Novella, et

al., 2001). In one study of outpatients from a memory disorder clinic, Ready, Ott, and

Grace (2004), compared the quality of life scores reported by patients (with either mild

Alzheimer’s disease, Mild Cognitive Impairment, or elderly controls) and their carers,

and found that carer- and patient- perceptions of quality of life differed substantially in

all three groups. Arons and Colleagues (2013) explain that when assessing health-

related quality of life of their patients, caregivers project part of their own HRQoL

onto patients. It is therefore hypothesised that carers will rate health-related quality of

life lower than patients in both nursing homes and own homes.

Factors influencing self-reported quality of life

The current study also aims to investigate the effects of dementia severity on

quality of life so that these effects can be separated from the potential effects of

residence: nursing home or own home. Due to the mixed findings of previous research,

it is difficult to decipher whether severity of dementia will have an effect on quality of

16

life in the current study. On one hand, some previous research has found that greater

physical impairments (Moyle, McAllister, Venturato, & Adams, 2007), and higher

levels of behavioural and psychological disturbance (Banerjee, et al., 2006), contribute

to lower quality of life. Other studies however, report that severity of dementia has no

statistically significant impact on QoL (Andersen, et al., 2004).

Further factors such as earlier age of onset of dementia (Banerjee, et al., 2008;

Hurt, et al., 2008; Wahab & Ikebudu, 2014) have also been found to be predictors of

poor quality of life. In their study, Wahab and Ikebudu (2014) found that early onset

dementia can impact negatively on the physical, socioeconomic and emotional

wellbeing of a patient. They explain that quality of life is generally poor in these

individuals, with the problems of finance, loss of jobs, loss of memory and

independence, and loss of their position in society. The effects of gender have also

been reported among the elderly, with research by Orfila and colleagues (2006)

finding elderly women reported lower quality of life than elderly men. It is thought

that this difference could be due to males and females perceiving symptoms and the

illness process in different ways: i.e. men are brought up to ignore physical discomfort

and therefore are less likely to seek medical care. The present study therefore aimed to

clarify whether the age and gender of a patient with dementia would affect their self-

reported quality of life. It was predicted that a younger age and female gender of a

patient would lead to self-perceptions of a lower quality of life.

Factors affecting carer-reported quality of life

Lastly, it is proposed that carer-rated quality of life will be affected by the

patients’ dementia severity and the patients’ age, and so these effects will also be

explored. According to Banerjee and colleagues (2006), older patients and their carers

find it easier to adapt to dementia because they have had more experience of dementia

in their peers, and therefore believed that their peers would be more accepting of them

if they were diagnosed with dementia themselves. Even though it is not the norm to be

diagnosed with dementia at any age, diagnosis comes as less of a shock later on in life,

as the prevalence of dementia rises with age and more peers are diagnosed. Dementia

severity should also affect proxy-reports of quality of life as the gap between the

carer’s and the patient’s wellbeing become wider.

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METHOD

Design

The study used a cross sectional questionnaire design, examining between subjects

variables: home Vs care home and also patient Vs carer effects on quality of life

scores. There were three independent variables: place of residence (with two levels:

home or nursing home), severity of dementia (with three levels: mild, moderate or

severe), and respondent (with two levels: carer or a person with dementia). The

dependent variable was the total health-related quality of life score reported by carers

and individuals with dementia, using the DEMQOL and DEMQOL-proxy measures.

Participants

Participants were recruited via convenience sample. All participants lived in the

Lancashire area.

‘Home’ group:

Fifteen people with mild to moderate dementia living in their own homes were

recruited, 4 were male aged 53 to 84, with a mean age of 72, and 11 were female aged

65 to 96, with a mean age of 85. Participants were matched with their primary carers:

2 community carers (aged 48 and 20) answered questionnaires about a total of 10 of

their key service-users (5 each), and a further 5 carers answered one questionnaire

each. Out of the 15 carer questionnaires which were completed, 3 were from male

carers between the ages of 23 and 67, with a mean age of 46, and 12 were from female

carers between the age of 20 and 50, with a mean age of 34.

A further 19 carers, who were either the spouse, son, daughter, or professional

carer of a person with dementia took part. There were 11 questionnaires answered

about patients with severe dementia, 6 answered about patients with moderate

dementia and 2 answered about patients with mild dementia. The 8 people who had

mild or moderate dementia refused to take part in the study themselves, and the 11

people with severe dementia were incapable of taking part. Of these 19 carers, 7 were

male aged 23 to 78, with a mean of 49, and 12 were female aged 21 to 79, with a mean

age of 44.

18

‘Nursing home’ group:

Seventeen people with mild to moderate dementia living in nursing homes took part, 6

of which were male aged 69 to 92, with a mean age of 80, and 11 were female aged 72

to 94, with a mean age of 84. Participants were matched with their key workers: 9

heath care assistants between the ages of 20 and 48 who answered on behalf of one or

more of their key patients. Overall, the seventeen matched carer questionnaires were

completed by 9 carers, 3 were from male carers aged 20 to 41, with a mean age of 27,

and 14 were from female carers aged 22 to 48, with a mean age of 31.

A further 15 carers who were key workers for a person with dementia living in

a nursing home also took part in the study. These 15 carers completed a total of 62

questionnaires on behalf of their key patients. . There were 35 questionnaires answered

about service users with severe dementia, 22 answered about service users with

moderate dementia and 5 answered about service users with mild dementia. The 27

people who had mild or moderate dementia either were unable to answer questions

adequately due to their condition, refused to take part in the study themselves or the

nursing home that they were living in refused these service users taking part due to the

potential trauma it might cause them. The 35 people with severe dementia were unable

to take part. 17 of the questionnaires were completed by male carers aged 20 to 51,

with a mean age of 30, and 45 were completed by female carers aged 18 to 58, with a

mean age of 37.

Extra information:

To ensure the most accurate reports, the most appropriate proxy participants were

recruited (Magaziner, 1997). All carers who were recruited from nursing homes and

were the key workers for the person with dementia. Carers for people with dementia

living at home were either related as their spouse, son, or daughter, or they were

professional home care workers who visited the patient on a regular basis.

Of those with the ability to take part in the study, 8 out of the 23 (34.8%) people

with dementia living at home refused to take part in the study, leaving the specified 15

people in this group. In the nursing home group, 3 out of the 25 people with dementia

refused to take part, and a further 5 people with dementia were refused by the care

home manager to take part in the study due to its sensitive and distressing topic. This

19

was a dropout rate of 32.0% and left the specified 17 people in the nursing home

condition.

Materials

Materials included in the study were two information sheets, two consent forms and

two debrief sheets (which were different for carers and the person with dementia) as

well as modified versions of the DEMQOL and DEMQOL-proxy questionnaires.

Materials for carers

The information sheet (see Appendix 1) given to carers, highlighted the prevalence of

dementia, with a brief reference from the Alzheimer’s Society which reported 800,000

present cases in the UK. The sheet also gave a brief overview of the researcher’s

interests in the area of Health Psychology and this led on to details about the present

study. The DEMQOL and DEMQOL-proxy questionnaires were explained, including

information about the scales, comments about reliability, what the scales measure (i.e.

the 5 different categories: daily activities and looking after yourself, health and

wellbeing, cognitive functioning, social relationships, and self-concept), and its

suitability for use with all levels of severity of dementia. The carers were then

informed that they would be asked to fill in the DEMQOL-proxy questionnaire on

behalf of their service user if they agreed to take part in the study. Finally, it was

stressed that any information provided by the carers during the study would remain

confidential and anonymous and would only be used for the purpose of the present

study. It was also stated that raw data would be destroyed after use and that carers

were able to withdraw their questionnaires from the study during their participation or

up to one month after handing them in.

The consent form (see Appendix 2) given to carers consisted of a checklist to

make sure that they had understood all of the information provided to them and that

they had been given the opportunity ask questions about the study. Carers were asked

to circle either ‘yes’ or ‘no’ to whether they thought the four following points had been

highlighted, for example: ‘you can withdraw your data from the study at any time prior

to and up to one month after handing n your data’. Carers were then asked to provide

20

their signature at the bottom of the page if they have fully understood the information

provided about the study and wished to take part.

The modified version of the DEMQOL-proxy questionnaire (see Appendix 3)

by Smith and Colleagues (2005) consisted of 32 questions with 4-point likert scale

style responses. Examples of the questions included ‘in the last week would you say

that participant …………. Has been cheerful?’, ‘in the last week how worried have

they been about their memory in general?’, and ‘in the last week how worried have

they been about not being able to help other people?’. Answers ranged from ‘a lot’

(scored 1 point), ‘quite a bit’ (scored 2 points), ‘a little’ (scored 3 points) to ‘not at all’

(scored 4 points). Scores were reversed for questions 1, 4, 6, 8, and 11. Overall quality

of life scores were calculated by adding the scores from questions 1 to 31, and possible

scores ranged from 31 to 124, with a higher score indicating a better health-related

quality of life. The questionnaire was modified for use in the present study to include a

qualitative element, so that carers could comment on how they thought quality of life

could be improved relating to the questions of the original DEMQOL-proxy

questionnaire. For example, along with the original question of ‘in the last week,

would you say that participant ………… has felt worried or anxious’ carers were also

asked ‘what, if anything, made them feel cheerful this week’ and ‘what, if anything,

would make them feel more cheerful’. It was thought that having a qualitative element

would add benefit to the research partly by aiding discussion into the reasoning behind

the quantitative results and also by helping carers to reflect on how they might

improve quality of life for their service users. For use in the present study the

DEMQOL-proxy scale, was found to have excellent reliability (α=.90).

The carers debrief sheet (see Appendix 4) started with a recap of the present

study, including the aim, a reminder of what they were asked to do during

participation, and the questions the study aimed to answer. The sheet then assured

participants that their data would be kept safe, with raw data sheets being stored in

locked filing cabinets and spreadsheet data being saved to a password protected

computer. Lastly, the contact information of the researchers were provided for if

participants had any further questions, and support group and helpline telephone

numbers (e.g. Alzheimer’s Society Central Lancashire) were provided for if

participants had been affected by the research.

21

Materials for the person with dementia

The information sheet (see Appendix 5) given to participants with dementia,

highlighted that the aim of the research was to use the DEMQOL questionnaire to

measure quality of life in people with dementia and compare people who live at home

to those living in nursing homes. The DEMQOL questionnaire was described,

including information about what the scale measured (i.e. the 5 different categories:

daily activities and looking after yourself, health and wellbeing, cognitive functioning,

social relationships, and self-concept). There are also small sections about what they

would be asked to do, what their carers had been asked to do, how the data would be

used and how they could withdraw their questionnaire from the study.

The consent form (see Appendix 6) given to service users was very similar to

that given to carers. It consisted of a checklist to make sure that they had understood

all of the information provided to them and that they had been given the opportunity

ask questions about the study. Service users were asked to circle either yes or no in

response to the checklist items and were then asked to provide their signature at the

bottom of the page if they had understood the information provided about the study

and wished to take part.

The modified version of the DEMQOL questionnaire (see Appendix 7), also by

Smith and Colleagues (2005), consisted of 29 questions with 4-point likert scale style

responses. Examples of the questions included ‘in the last week have you felt

cheerful?’, ‘in the last week how worried have you been about forgetting who people

are?’, and ‘in the last week how worried have you been about getting help when you

need it?’. Answers ranged from ‘a lot’ (scored 1 point), ‘quite a bit’ (scored 2 points),

‘a little’ (scored 3 points) to ‘not at all’ (scored 4 points). Questions 1, 3, 5, 6 and 10

were reverse-scored. Overall quality of life scores were calculated by adding the

scores from questions 1 to 28, with possible scores ranging from 28 to 112 (a higher

score indicated a better health-related quality of life). This questionnaire was also

modified for use in the present study to include a qualitative element, so that patients

could comment on how they thought their quality of life could be improved relating to

the questions of the original DEMQOL questionnaire. For example, along with the

original question of ‘in the last week, have you felt irritable?’ patients were also asked

‘what, if anything, made you feel irritable this week’ and ‘what, if anything, would

22

make you feel less irritable’. It was thought that having a qualitative element would be

add benefit to the research partly by aiding discussion into the reasoning behind the

quantitative results and also by helping patients to reflect on how their quality of life

might be improved. For use in the present study the DEMQOL scale, was found to

have excellent reliability (α=.95).

The service user’s debrief sheet (see Appendix 8) began with a reminder of the

study, including the aim, their participation, and the questions the researcher aimed to

answer. The sheet then went on to assure participants that their data would be kept

safe, with raw data sheets being stored in locked filing cabinets and spreadsheet data

being saved to a password protected computer. Lastly, the contact information of the

researchers were provided for if participants had any further questions, and support

group and helpline telephone numbers (e.g. Alzheimer’s Society Central Lancashire)

were provided for if participants had been affected by the research.

Procedure

There were some very important ethical issues which needed to be met before, during

and after data collection. The researcher had a recent disclosure and barring service

check for working with vulnerable adults and also kept all information confidential

and anonymous.

Nursing homes

Participants were recruited via opportunity sample with managers being emailed

directly by the researcher and asked whether they would like their nursing home to

take part in the study. On response to the initial email, nursing home managers were

asked how many people with dementia in their facility would have the ability to take

part and how many people with dementia would be unable to answer their own

questionnaire, so that the correct amount of materials could be supplied. The

researcher then visited the care home to administer the questionnaires. Key workers

for each person with dementia were asked to take part first and were escorted to a

quiet room by the researcher. On being given their questionnaire pack, key workers

were asked to read the information sheet (see Appendix 1) and were then given the

opportunity to ask any questions they had about the research. Key workers were then

23

asked to sign the consent form (see Appendix 2) if they understood the information

provided to them and agreed to take part. If they agreed to take part they were asked to

fill in the modified version of the DEMQOL-proxy questionnaire (see Appendix 3).

On its completion or on the decision to remove themselves from the study, participants

were asked to read the debrief sheet (see Appendix 4) and given the chance to ask any

further questions.

Once the key worker had finished their participation, their corresponding

patient was asked to take part in the research. This was based on recommendations

from the nursing home manager as to which people would have the ability to take part.

Those with severe dementia who were unable to take part, were not included in the

study, and key workers’ questionnaires were used as an indication of quality of life for

these individuals. Patients who were able to and willing, were given their

questionnaire pack. They were asked to read the information sheet (see Appendix 5)

and consent form (See Appendix 6), or if preferred, the information sheet and consent

form were read out to them by the researcher. They were given the opportunity to ask

any questions about the research and asked whether they understood the information

provided to them. They were then asked to sign the consent form if they agreed to take

part. The researcher then administered the modified version of the DEMQOL

questionnaire (see Appendix 7), which was more like an interview process, with the

researcher reading out the questions and helping with any difficulties in answering

them. The researcher used the interviewer manual (Smith, et al., 2005) designed for

use with the DEMQOL and DEMQOL-proxy if any problems occurred. Participants

were then read the debrief sheet (see Appendix 8).

Own homes

Participants were recruited via opportunity sample, with the researcher contacting

managers of community care companies, in the Lancashire area, via email. Once they

had replied, the researcher went to meet the manager and care staff who were

interested in taking part in the research. Carers took part in their questionnaire at this

point. On being given their questionnaire pack, carers were asked to read the

information sheet (see Appendix 1) and were then given the opportunity to ask any

questions they had about the research. Carers were then asked to sign the consent form

(see Appendix 2) if they understood the information provided to them and agreed to

24

take part. If they agreed to take part they were asked to fill in the modified version of

the DEMQOL-proxy questionnaire (see Appendix 3). On its completion or on the

decision to remove themselves from the study, participants were asked to read the

debrief sheet (see Appendix 4) and given the chance to ask any further questions.

Afterwards, carers were asked to inform their patients of the research and ask if

any of them would be interested in taking part. If so, the researcher visited the home of

the patient, with the carer. Patients were given their questionnaire pack and asked to

read or have read to them, by the researcher, the information sheet (see Appendix 5)

and consent form (see Appendix 6). Patients were asked whether they had any

questions about the study, and it was made sure that they fully understood what they

were being asked to do. Once the patient was happy, they were asked to sign the

consent form to begin the questionnaire. The researcher then administered the

modified version of the DEMQOL questionnaire (see Appendix 7), in the style of an

interview, with the researcher helping with any difficulties. The researcher used the

interviewer manual (Smith, et al., 2005) designed for use with the DEMQOL if any

problems occurred. On completion of the questionnaire, participants were read the

debrief sheet (see Appendix 8).

RESULTS

As laid out in the instruction manuals for the DEMQOL and DEMQOL-proxy (Smith,

et al., 2005), where one item was missing, the mean substitution method was used; this

was done for 7 (10%) carer completed questionnaires. There was only 1 questionnaire

by a patient (3%) which was not completed, having many missing items, and so this

participant was excluded from the results.

Cronbach’s (1951) alpha coefficient was calculated to assess the reliability and

internal consistency of both the DEMQOL and DEMQOL-proxy measures, for use

with the current sample of participants. As reported in the Materials section, both the

DEMQOL (α=.90) and DEMQOL-proxy (α=.95) were found to have excellent

reliability and internal consistency (George & Mallery, 2003)

25

Descriptive Statistics

Table 1: Means and Standard Deviations of Quality of Life Scores reported by Carers

and Patients in ‘Nursing Homes’ and ‘Own Homes’ Groups.

Table 1 reports the mean values of the quality of life scores of people with dementia,

living at home or within a nursing home, as reported by the person themselves and

also their carers. The results show that on average, the quality of life scores were

reported to be higher for people living in nursing homes as opposed to people living in

their own homes by both the person with dementia and their carer. In both nursing

homes and own homes, the carer reported that the person with dementia had a higher

quality of life, than the patient reported themselves. Overall, the lowest mean quality

of life score was reported by people with dementia living in their own homes.

Further factors affecting patient and carer-reported quality of life:

Table 2: Means and Standard Deviations of Quality of Life Scores reported by Carers

and Patients for Male and Female Patients.

Table 2 shows that there was little difference between carer-reported quality of life of

male patients and female patients. However, on average, female patients reported their

own quality of life higher than male patients did.

Table 3: Means and Standard Deviations of Quality of Life Scores reported by Carers

and Patients Young and Older Patients.

Home Nursing

Carer 83.24 (14.71) 93.37 (14.44)

Patient 72.93 (15.58) 91.71 (17.99)

Male patient Female patient

Carer 83.40 (14.42) 85.23 (10.37)

Patient 78.50 (24.50) 84.91 (16.48)

26

Young patient Older Patient

Carer 84.57 (11.43) 84.72 (12.01)

Patient 87.57 (16.32) 79.28 (20.84)

Table 3 shows that carers rated quality of life similarly for younger and older patients.

However, younger patients reported higher quality of life, on average, than older

patients.

Table 4: Means and Standard Deviations of Quality of Life Scores reported by Carers

and Patients for Patients with Mild, Moderate and Severe Dementia.

Mild Moderate Severe

Carer 87.29 (14.91) 85.53 (13.78) 96.29 (14.91)

Patient 83.71 (21.08) 82.91 (19.80) 80.00 (8.49)

Table 4 shows that carers rated quality of life similarly for patients with mild and

moderate dementia, and much higher for patients with severe dementia. Patients

reported lower quality of life as dementia severity increased, although this was not a

major difference.

Inferential Statistics

A matched-pairs t-test was conducted to compare patient- and carer-reported quality of

life scores for patients living in their own homes. There was a significant difference in

the quality of life scores reported by the carer (M=85.27, SD=12.48), and those

reported by the person with dementia (M=72.93, SD=15.58), t(14)= -4.58, p<.001.

These results show that for people with dementia living at home, their carers reported

a higher quality of life for their patients than the patient did themselves.

A matched-pairs t-test was also performed to compare patient- and carer-

reported quality of life scores for patients living in nursing homes. The results show

that there was no significant difference in the quality of life scores reported by carers

(M=84.12, SD=11.07) and the Quality of life scores reported by the person with

dementia (M=91.71, SD=17.99) when the person with dementia was living in a

27

nursing home, t(16)=1.37, p=.20. These results show that for people with dementia

living in nursing homes, carers and patients reported similar quality of life scores.

An independent samples t-test was conducted to compare quality of life scores

in nursing homes and own homes, as reported by the person with dementia. There was

a significant difference between patients self-reported quality of life scores whom

were living at home (M=72.93, SD=15.58), and those living in nursing homes

(M=91.71, SD=17.99), t(30)=-3.13, p=.004. These results show that people with

dementia living in nursing homes reported significantly higher quality of life scores

than people with dementia living in their own homes.

An independent samples t-test was also conducted to compare quality of life

scores in nursing homes and own homes, as reported by the carer of the person with

dementia. There was a significant difference between the carer-rated quality of life

scores of people with dementia living in their own homes (M=83.24, SD=14.71) and

people with dementia living in nursing homes (M=93.37, SD=14.44), t(111)=-3.40,

p=.001. The results show that carers rated their patient’s quality of life higher when

they lived in nursing homes, as opposed to living in their own homes.

A 2x2x3 between groups ANOVA was used to examine the main effects and

interactions of patient gender (male, female), age (young, old), and dementia severity

(mild, moderate and severe) on the quality of life score reported by the patient. The

results revealed a main effect of patient gender on quality of life, F(1, 2100) = 6.38, p=

.019, ηᵨ2 = .21, showing that women, on average, rated their quality of life higher than

men. There was also a main effect of patient age on quality of life F(1,1463) = 4.47,

p= .046, ηᵨ2 = .16, with younger patients rating their quality of life, on average, higher

than older patients. The dementia severity x patient gender interaction was also

significant, F(1, 1472) = 4.47, p= .045, ηᵨ2 = .16.

A 2-way between groups ANOVA was used to examine the main effects and

interactions of dementia severity (mild, moderate, severe) and patient age (young, old)

on the quality of life score reported by the carer. The results revealed no significant

main effects of dementia severity F(2,153) = .562, p= .557 ηᵨ2 = .040, or patient age

F(1,44) = .326, p= .573, ηᵨ2 = .012. There was also no significant interaction among

dementia severity and patient age F(1,258)= 1.894, p= .18, ηᵨ2 = .066.

28

To explore the interaction between dementia severity and patient gender, a

confidence interval graph was plotted (see Appendix 9). There was no overlap

between confidence intervals for mild severity males and moderate severity males and

so these differences were investigated further with a post hoc test.

A post hoc independent t-test was conducted to compare the quality of life

scores of males who had mild dementia and males who had moderate dementia. The

test revealed that there was no significant difference between males who had mild

dementia (M=51.00) and males who had moderate dementia (M=81.00, SD=23.88),

t(8)= -1.21, p= .26. Although the 2x2x3 between groups ANOVA suggested there was

an interaction between gender and severity of dementia, the differences between

quality of life scores at each severity level were not significantly different for males or

females.

DISCUSSION

The purpose of the present study was to investigate quality of life in people with

dementia living at home and those living in nursing homes, to see if there were any

differences. The study is the first step to looking at these differences and will therefore

help towards future research directions and suggestions for effective interventions to

increase health-related quality of life of people in these environments.

Residence and HRQOL

Overall, the results indicated that the quality of life of people with dementia can be

affected by where they live. In this study, both service users and carers rated quality of

life, on average, higher when the person with dementia was living in a nursing home,

as appose to their own home. This finding contrasts with the research hypothesis: that

“quality of life would be higher in ‘own homes’”, and presents an interesting

perspective, especially as so many people with dementia choose to stay independent in

their own homes (Alzheimer’s Society, 2014i).

One drawback of people with dementia living at home is the potential

loneliness they might face. The Alzheimer’s Society (2014e) reported that, in the UK,

two-thirds of people diagnosed with dementia live in their own homes, and a study by

Mirando-Costillo (2010) suggests that a half of these are living on their own. To put

29

this into perspective, this is around 270,000 people with dementia in the UK. Living

alone is likely to be a disadvantage to people with dementia on a number of levels, for

example they are more likely to become socially isolated, and lack guidance about

their condition and advice on the services they could access. As a result of this they are

more likely to feel lonely (Alzheimer’s Society, 2013). The Alzheimer’s Society

believes that having opportunities to interact socially and take part in activities are

important to sustaining a good quality of life. Tackling loneliness among older people

in general is now on the public policy agenda but the Alzheimer’s Society believes

that there is more work to be done to support people living alone with dementia. The

theory of loneliness is supported by further findings of the present study. People with

dementia living at home reported their quality of life to be the lowest with most

commenting that they wanted to go out more, have more company, and see their

family more, e.g. ‘I’m sat on my own a lot during the day’, ‘family could come round

more’, and ‘nobody visits me apart from carers’.

In contrast to this, nursing homes offer support and company from staff and

other residents on a 24/7 basis. Nursing homes often run activities, such as board

games, arts and crafts, and film sessions for groups, and also manicures and hand

massages for individuals. As well as this, nursing homes often organise outings so that

groups of residents can enjoy the fresh air together. In the current study, people with

dementia living in nursing homes reported their enjoyment of ‘playing games, for

example board games’, ‘the ability to go for a walk’ and ‘having company, talking to

people, being with people’.

It is important that the present study is replicated on a larger scale in future

research, to see whether loneliness is the main factor associated with lower quality of

life in people with dementia living at home. A separate measure of loneliness would be

advantageous to see how strongly loneliness correlates with quality of life. These

findings hold important implications for people with dementia who do wish to stay at

home, as they may benefit from loneliness interventions, such as befriending,

mentoring and gatekeeping (Windle, Francis & Coomber, 2011). Researchers may

wish to study the effectiveness of these loneliness interventions to see how they can be

improved and how they can become more accessible. There services are important, not

only to quality of life, but also to mental and physical health, with loneliness having

30

lasting effects on blood pressure (Hawkley, Thisted, & Cacioppo, 2010) as well as

being associated with depression (Cacioppo, et al., 2006) and higher rates of mortality

(Steptoe, Shankar, Demakakos, & Wardle, 2013).

As a further explanation, it has been suggested that as terminal illnesses

progress to end of life, patients' priorities in terms of their quality of life may change.

It has been argued that existential, spiritual, and social issues become more important

(Cohen & Mount, 1992). In a study by Waldron and colleagues (1999) patients with

advanced, incurable cancer, rated concerns about their family as more important than

their own health. Tang, Aaronson and Forbes (2004) explained that when people with

terminal illnesses agree to move into a hospice, this may signify acceptance of their

condition, and as a result individuals may re-evaluate what is important to them. In

terms of relating this to people with dementia, it might be that people who move into

nursing homes are better able to accept and adapt to their condition, and therefore

focus on more positive aspects of their lives, resulting in a better quality of life

(Sprangers & Schwartz, 1999).

This theory was supported by the present study. People with dementia living in

their own homes tended to focus on the limitations of their condition, for example ‘not

being able to do much for myself’, ‘I get confused sometimes and forget things’ and ‘I

am not very well. I have a heart problem and problems with my legs’. They also

pointed out that there were a lot of things that they are unable to do e.g. ‘go on holiday

like I used to’, ‘no way of getting to the shops’ and ‘not being able to manage my own

finances’. In contrast to this, people with dementia living in nursing homes focussed

less on the limitations of their condition, e.g. ‘I am able to do most things I want to

do’, ‘I don’t have any worries’, and ‘my health seems fine, so there’s nothing to worry

about’. They tended to focus more on valuing time spent with their families, e.g. ‘I am

content with my husband and kids’, ‘my daughter, son and grandchildren- we all get

on well and enjoy being together’ and ‘I have my daughter to get me out of any mess’.

The experience of this change in priorities was termed “response shift”

(Addington-Hall & Kalra, 2001) and may help explain why people in nursing homes

report a better quality of life than those still living at home, regardless of dementia

severity. Future longitudinal research should investigate the differences in beliefs and

values of people who choose to move into nursing homes compared to those who

31

choose to stay at home. Research of this description would uncover the reasons why

people living at home do not want to move into nursing homes, and would help health

professionals to direct information and support based on these concerns.

Respondent and HRQOL

According to the hypothesis of the present study, it was predicted that carers in

both environments would rate quality of life lower than the person with dementia

themselves. This hypothesis was not supported for either condition. Firstly, the current

study found that there was no significant difference between carer and service user

reports of quality of life in nursing homes. It also found that in the ‘own homes’ group,

carers rated quality of life higher that the person with dementia themselves. These

findings contrast with previous research conducted on people with dementia at home

or within hospitals (Sheehan, 2012; Sands, et al., 2004) which have concluded that

proxy reports are usually lower than the patients’ reports of their quality of life. These

studies theorised that proxies often fail to be able to see things from the perspective of

the person with dementia. Future research should aim to clarify the differences

between patient and proxy reports in the ‘own homes’ population, however the present

findings for the ‘nursing homes’ group are rather interesting. The reason that the

present study has found carer and patient reports to be similar in nursing homes could

be due to a number of reasons.

The first issue could be level of burden. Sands and Colleagues (2004) found

that carers who reported high levels of burden rated patients’ quality of life lowest.

Even though carers in nursing homes will often feel some form of physical or

emotional burden (Albers, Van den Block, & Vander Stichele, 2014), these feelings

are likely to be more severe in carers who are looking after ill relatives at home (Clipp

& George, 1992). Being a family carer can often result in the break-down of family

relationships, social and work constraints, financial difficulties, and a negative impact

on their own physical health. Family carers have been reported to experience a range

of emotions, e.g. sadness, anxiety, grief (Magliano, et al., 2005), hostility and anger

(Ostman, M. and L. Hansson, 2004). Perhaps this is why caregivers looking after a

person with dementia in their own homes rated their quality of life significantly lower

than nursing home carers. Future research should aim to investigate the effects of

32

burden on carer-rated quality of life, to see whether this has contributed to the

difference in the present study.

As well as experiencing less burden, there are other factors associated with

carers in nursing homes being able to better predict quality of life in their service

users. Some studies have concluded that agreement between carers and patients can

improve over time (Stephens, Hopwood, Girling, & Machin, 1997). Nursing home

staff are likely to spend more time with their patients than community carers, with

community carers usually visiting patients in their own homes up to four times a day

for short periods of time, and nursing home staff often working several long shifts per

week. Also carers looking after a family member with dementia are likely to compare

them to what they used to be like before the dementia, therefore resulting in a lower

quality of life to professional carers. They may also be inexperienced in the care of a

person with dementia and therefore not used to dealing with associated challenging

behaviours.

Whatever the reason for carers and patients reporting similar quality of life in

nursing homes, this can only be a good thing, as it would mean that nursing home

carers may be more likely to accurately predict the health-related quality of life of

people with severe dementia who are unable to provide accounts for themselves.

Future research should aim to clarify the difference between carer-rated quality of life,

by comparing results from family-, community- and nursing home carers.

Age and HRQOL

The present study found that younger patients rated their quality of life higher

than older patients, regardless of place of residence, and this disputes the research

hypothesis. This finding also contrasts with previous research which has found that

quality of life increases with age in people with dementia living at home (Banerjee, et

al., 2006) and people with other severe and persistent mental illnesses (Mercier,

Péladeau, & Tempier, 1998). It is thought that, in the present study, place of residence

may have mediated the effect of age on a patients’ quality of life, with both ages

reporting higher quality of life in nursing homes than own homes, and patients of a

younger age reporting higher quality of life in both settings.

33

It is thought that a patient’s quality of life might be affected by people that they

spend time with. Patients living at home may compare themselves to people in their

social circle: mainly family and carers and therefore rate their quality of life lower due

to their dementia. On the other hand, people living in nursing homes, who might

compare themselves to fellow residents with severe dementia, might rate their own

quality of life higher. This effect might be stronger for younger residents, who might

have an earlier stage of dementia to older residents, and therefore rate their quality of

life higher than older patients. This still does not explain why younger people with

dementia reported a higher quality of life than older people in their own homes, and

future research should aim to clarify this discrepancy with past research. A larger

sample, should be recruited, including groups of people with mild, moderate and

severe dementia, at younger and older ages, living at home and in nursing homes.

Gender and HRQOL

The study also revealed that overall women rated their quality of life higher

than men, regardless of place of residence. This finding contrasts with previous

research by Orfila and colleagues (2006), which found that elderly men report better

quality of life than elderly women. In fact previous research has found that men

reported a higher quality of life than women for range of different conditions,

including cardiac patients (Emery, et al., 2004), chronically ill patients with type 2

diabetes, hypertension and ischaemic heart disease (Jayasinghe, et al., 2013), people

with a severe mental illness (Bonsaksen, 2012), brain tumour survivors (Niemelä, et

al., 2011), and cystic fibrosis patients(Gee, Abbott, Conway, Etherington, & Webb,

2003). In their study of brain tumour survivors, Niemelä and colleagues (2011)

concluded that female patients felt more sadness, depression, anxiety, worry and

dependence on others than male patients. Based on the strength of previous research, it

is suggested that more research be conducted on gender effects on quality of life in

dementia, to verify the direction of gender effects. This should aid the design of

different quality of life interventions, specifically targeted at males and females, as this

should help enhance their overall quality of life more efficiently.

34

Dementia severity and HRQOL

The present study found no significant effect of severity alone on quality of life

in dementia, showing that quality of life does not decline as severity increases. In

previous research there have been very mixed findings on the effects of severity of

quality of life. While most research agrees with the present study (Andersen, et al.,

2004), some previous research has found that greater physical impairments (Moyle,

McAllister, Venturato, & Adams, 2007), and higher levels of behavioural and

psychological disturbance (Banerjee, et al., 2006), contribute to lower quality of life.

The present study did however find an interaction between gender and severity, but on

this occasion there were no significant differences in quality of life at each stage of

dementia for males or females. This interaction needs to be investigated further in

future research, to see if a larger sample would result in a significant finding.

Factors affecting proxy-reported quality of life

Carer-rated quality of life scores were not affected by the age or severity of dementia

of the patient, despite the results of previous research by Banerjee and colleagues

(2006). A possible explanation for this could be that family carers’ and professional

carers have differing levels of awareness and experience. Family carer ratings might

be affected as the patient becomes older and their dementia more severe, as they have

memories of them before their dementia. However, professional carers who have no

memory of their patients as they were before being diagnosed with dementia, will be

affected less by age and severity of dementia. The present study used participants who

were mainly professional carers and future research should investigate the potential

difference between how age and dementia severity effect ratings of quality of life by

family carers and professional carers.

Strengths, Limitations and Future research

The main strength of the present study is that it fills major gaps in previous

research, and opens many new avenues for future research. The study was intended as

a preliminary investigation into environmental effects on quality of life in people with

dementia, and also offers suggestions as to how and why quality of life may be

affected by age, gender, and severity of dementia. These suggestions will be useful in

35

the development of new (and improvement of existing) quality of life interventions,

which will be more person-centred and effective as a result.

The main limitation of the present study was the relatively small sample size.

This is likely to have affected the results of the study in two ways. Firstly the power of

the results were low, meaning that the reliability should be questioned. Also, the

likelihood of a type ׀׀ error would also have been high due to the inflation of p-values.

This would mean that hypotheses may have been rejected, when with a larger sample

they would have been accepted. The small sample of dementia patients also meant that

the effects of age, gender and severity could not be compared for people living at

home and people living in nursing homes.

A further limitation was the sample not being representative of the total

population of people with dementia (and their carers) living (and working) at home

and within nursing homes. All participants were from the Lancashire area, and only

specialist dementia nursing homes took part. The managers of these nursing homes

also expressed an interest in dementia research and were keen to keep improvements

in care up to date. It could be that residents living within these nursing homes had an

overall health-related quality of life which was better than the general population of

dementia patients, due to the nursing home being more up to date and interested in

dementia research. Future, larger scale studies should include a more representative

sample of participants from different areas of the UK, and different types of nursing

and care homes, to gain a more detailed picture on how to improve quality of life.

The present study has important implications for people who have dementia

and are facing the decision of whether to stay at home or move into a nursing home,

due to their deteriorating condition. It also has important implications for family

members who have the same decision to make, due to the person with dementia being

unable to make an informed decision. The study presents an interesting perspective: it

introduces a new way of thinking about nursing homes which is optimistic to the

possibility that living in a nursing home can have a positive impact on quality of life.

This area would benefit from future longitudinal research into the effects of

moving from living at home into a nursing home. Quality of life should be measured

after certain events (e.g. being diagnosed with dementia, throughout disease

36

progression, moving into and adapting to living in a nursing home and once settled in

a nursing home), to see how people adapt and how people change their perceptions of

quality of life. Future research also needs to further investigate the effects of age,

gender and dementia severity on patient- and carer-reported quality of life for both

people living at home and living in nursing homes.

In conclusion, the present study is the first to suggest that nursing home care

can increase the health-related quality of lie of people with dementia, beyond that of

people with dementia choosing to live at home. Not only have patients themselves

reported this difference, but carers in nursing homes are also better able to predict the

quality of life of residents, showing that they are more knowledgeable about their

patients’ needs and satisfactions. As a preliminary investigation, this study provides

suggestions for future research with larger, more representative samples, which should

aim to further explore the effects of residence, age, gender and severity on quality of

life, and use these findings to develop more effective quality of life interventions.

Future longitudinal research should also investigate how the concept of quality of life

changes over time for people with a diagnosis of dementia.

37

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J.C., Murray, J., Prince, M., Levin, E., Mann, A., & Knapp, M. (2005).

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development of a new instrument (DEMQOL) and an evaluation of current

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david-cameron-alzheimers-nhs

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47

APPENDICES

Carer Materials 48-58

Information sheet 48

Consent form 49

DEMQOL-proxy questionnaire 50-57

Debrief sheet 58

Materials for person with dementia 59-68

Information sheet 59

Consent form 60

DEMQOL questionnaire 61-67

Debrief sheet 68

SPSS output

48

Carer’s Information Sheet

As you are aware, dementia is one of the most common and most serious conditions

affecting a lot of people in later life. As of this year, the Alzheimer’s Society reports that

there are 800,000 people living with dementia in the UK alone.

My research interests:

As a Heath Psychology Masters student at the University of Central Lancashire, my main

areas of interest focus on improving the health-related quality of life of people with

different conditions and diseases, and helping them to live a fuller life, even when their

condition is terminal and limiting. I have chosen to base my dissertation on the quality of

life of people living with dementia. To do this I aim to explore existing measures of quality

of life and build on these to design new, more thorough and reliable tools which can be

used to improve quality of life in people with dementia.

DEMQOL and DEMQOL-proxy:

The most statistically reliable measure of quality of life for people with mild to moderate

dementia, to date, is the DEMQOL. The questionnaire is completed by the service user and

consists of 29 items which measure 5 different categories:

1. Daily activities and looking after yourself

2. Health and wellbeing

3. Cognitive functioning

4. Social relationships

5. Self-concept.

This is combined with a measure for carers to use to assess service users, called the

DEMQOL-proxy. This consists of 32 items, measuring the same 5 categories as above. The

DEMQOL-proxy is used along with DEMQOL for patients with mild to moderate stages of

dementia, however in severe cases where there is severe memory loss and communication

impairments, only the DEMQOL-proxy is completed.

The study:

If you agree to take part in this study you will be asked to complete a DEMQOL-proxy

questionnaire for each service user and also comment, based on your answers to the

questionnaire, how you think each individuals’ quality of l ife might be improved.

IMPORTANT:

Any information you provide will remain confidential and anonymous and will only be used

within this piece of research. Raw data will only be seen by the two researchers and all

sheets will be shredded once the study has concluded. You can withdraw your data during

and up to one month after filling in the questionnaires.

49

Carer’s Consent Form

This form is to check that you have understood all of the information provided to you on

the information sheet and that you have been given chance to ask any further questions

you have regarding the study or your participation.

Have the following points been highlighted?

Please circle:

1. You can withdraw your data from the study at

any time prior to and up to one month after YES NO

handing in your data.

2. All the data from the study will remain

confidential and anonymous and raw data YES NO

will only be read by the research team.

3. You will be asked to fill in DEMQOL-proxy

questionnaire forms which require you to YES NO

comment on the quality of life of service

users with dementia.

4. You will be asked to comment on how each

individuals’ quality of life may be YES NO

improved.

I HAVE UNDERSTOOD ALL OF THE ABOVE INFORMATION REGARDING THE RESEARCH STUDY

AND THEREFORE FULLY CONSENT TO TAKING PART.

Signature:

Date:

50

DEMQOL-proxy questionnaire Participant code: ……………………………..

Mild/moderate/severe (delete as appropriate)

I would like to ask you about participant’s ……………………… life as you are the person who

knows him/her best. There are no right or wrong answers. Just give the answer that best

describes how participant ……………………… has felt in the last week. If possible, try to give

the answer that you think participant ……………………… would give. Don’t worry if some

questions appear not to apply to participant ……………………… . We have to ask the same

questions of everybody.

Before we start we’ll do a practice question; that’s one that doesn’t count. In the last week,

how much has participant ……………………… enjoyed watching television?

A lot quite a bit a little not at all

For all of the questions I’m going to ask you, I want you to think about the last week.

First I am going to ask you about participant ………………………’s feelings. In the last week,

would you say that participant ……………………… has felt…

1. Cheerful?** a lot quite a bit a little not at all

What, if anything, made them feel cheerful this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make them feel more cheerful?

………………………………………………………………………………………………………………………………………………

.

2. Worried or anxious?

A lot quite a bit a little not at all

What, if anything, made them feel worried or anxious this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make them feel less worried or less anxious?

………………………………………………………………………………………………………………………………………………

.

3. Frustrated? A lot quite a bit a little not at all

What, if anything made them feel frustrated this week?

………………………………………………………………………………………………………………………………………………

.

51

What, if anything, would make them feel less frustrated?

………………………………………………………………………………………………………………………………………………

.

4. Full of energy?** A lot quite a bit a little not at all

What, if anything, made them feel like they were full of energy this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make them feel more like they were full of energy?

………………………………………………………………………………………………………………………………………………

.

5. Sad? A lot quite a bit a little not at all

What, if anything, made them feel sad this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would help to make them feel less sad?

………………………………………………………………………………………………………………………………………………

.

6. Content?** A lot quite a bit a little not at all

What, if anything, made them feel content this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would help to make them feel more content?

………………………………………………………………………………………………………………………………………………

.

7. Distressed? A lot quite a bit a little not at all

What, if anything, made them feel distressed this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, do you think would help to make them feel less distressed?

………………………………………………………………………………………………………………………………………………

.

8. Lively?** A lot quite a bit a little not at all

What, if anything, made them feel lively this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything would make them feel livelier?

………………………………………………………………………………………………………………………………………………

.

52

9. Irritable? A lot quite a bit a little not at all

What, if anything, made them feel irritable this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make them feel less irritable?

………………………………………………………………………………………………………………………………………………

.

10. Fed-up? A lot quite a bit a little not at all

What, if anything, made them feel fed-up this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make them feel less fed-up?

………………………………………………………………………………………………………………………………………………

.

11. That he/she has things to look forward to?**

A lot quite a bit a little not at all

What, if anything, did they look forward to doing this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, did they want to do this week, but couldn’t?

………………………………………………………………………………………………………………………………………………

.

What, if anything, do you think stopped them from doing what they wanted to this week?

………………………………………………………………………………………………………………………………………………

.

Next I’m going to ask you about participant ………………………’s memory. In the last week, how

worried have they been about…

12. their memory in general?

A lot quite a bit a little not at all

If they have been worried about their memory, how do you think this can be overcome?

………………………………………………………………………………………………………………………………………………

.

13. Forgetting things that happened a long time ago?

A lot quite a bit a little not at all

If they have been worried about forgetting things from a long time ago, how do you think

this can be overcome?

………………………………………………………………………………………………………………………………………………

.

53

14. Forgetting things that happened recently?

A lot quite a bit a little not at all

If they have been worried about forgetting things, how do you think this can be overcome?

………………………………………………………………………………………………………………………………………………

.

15. Forgetting people’s names?

A lot quite a bit a little not at all

If they have been worried about forgetting people’s names, how do you think this can be

overcome?

………………………………………………………………………………………………………………………………………………

.

16. Forgetting where he/she is?

A lot quite a bit a little not at all

If they have been worried about forgetting where they are, how do you think this can be

overcome?

………………………………………………………………………………………………………………………………………………

.

17. Forgetting what day it is?

A lot quite a bit a little not at all

If they have been worried about forgetting what day it is, how do you think this can be

overcome?

………………………………………………………………………………………………………………………………………………

.

18. Their thoughts being muddled?

A lot quite a bit a little not at all

If they have been worried about their thoughts being muddled, how do you think this can

be overcome?

………………………………………………………………………………………………………………………………………………

.

19. Difficulty making decisions?

A lot quite a bit a little not at all

If they have been worried about their difficulty in making decisions, how do you think this

can be overcome?

………………………………………………………………………………………………………………………………………………

.

20. Making him/herself understood?

A lot quite a bit a little not at all

54

If they have been worried about making themselves understood, how do you think this can

be overcome?

………………………………………………………………………………………………………………………………………………

.

Now I’m going to ask you about participant ………………………’s everyday life. In the last week,

how worried have they been about…

21. keeping him/herself clean (e.g. washing and bathing)?

A lot quite a bit a little not at all

What, if anything, makes them feel like they are keeping clean?

………………………………………………………………………………………………………………………………………………

.

What, if anything, can be done to improve his/ her feelings of keeping clean?

………………………………………………………………………………………………………………………………………………

.

How important is it to them that they can keep clean?

very quite a little not at all

22. keeping him/herself looking nice?

A lot quite a bit a little not at all

What, if anything, makes them feel like they look nice?

………………………………………………………………………………………………………………………………………………

.

What, if anything, can be done to improve his/ her feelings of looking nice?

………………………………………………………………………………………………………………………………………………

.

How important is it to them that they look nice?

very quite a little not at all

23. getting what he/she wants from the shops?

A lot quite a bit a little not at all

What, if anything, makes them feel like they are able to get what they want from the

shops?

………………………………………………………………………………………………………………………………………………

.

What, if anything, can be done to improve his/her feelings of being able to get what they

can from the shops?

………………………………………………………………………………………………………………………………………………

.

How important is it to them that they can get what they want from the shops?

very quite a little not at all

55

24. using money to pay for things?

A lot quite a bit a little not at all

What, if anything, makes them feel like they can use money to pay for things?

………………………………………………………………………………………………………………………………………………

.

What, if anything, can improve his/her feelings of being able to pay for things with their

own money?

………………………………………………………………………………………………………………………………………………

.

How important is it to them that they can use money to pay for things?

very quite a little not at all

25. looking after his/her finances?

A lot quite a bit a little not at all

What, if anything, makes them feel like they can look after their own finances?

………………………………………………………………………………………………………………………………………………

.

What, if anything, can improve his/her feelings of being able to look after their own

finances?

………………………………………………………………………………………………………………………………………………

.

How important is it to them that they can look after their own finances?

very quite a little not at all

26. things taking longer than they used to?

A lot quite a bit a little not at all

What, if anything, makes them feel like things are taking longer than they used to?

………………………………………………………………………………………………………………………………………………

.

What, if anything, can improve his/her feelings of things taking longer than they use to?

………………………………………………………………………………………………………………………………………………

.

How important is it to them that things don’t take longer than they used to?

very quite a little not at all

27. getting in touch with people?

A lot quite a bit a little not at all

What, if anything, makes them feel like they are in touch with people?

………………………………………………………………………………………………………………………………………………

.

What, if anything, can improve their ability to keep in contact with people?

56

………………………………………………………………………………………………………………………………………………

.

How important is it to them that they can keep in touch with people?

very quite a little not at all

28. Not having enough company?

A lot quite a bit a little not at all

What, if anything, makes them feel like they have enough company?

………………………………………………………………………………………………………………………………………………

.

What, if anything, can improve the amount of company that he/she receives?

………………………………………………………………………………………………………………………………………………

.

How important is it to them that they have enough company?

very quite a little not at all

29. Not being able to help other people?

A lot quite a bit a little not at all

What, if anything, makes them feel like they are not able to help other people?

………………………………………………………………………………………………………………………………………………

.

What, if anything, can make them feel like they are able to help other people?

………………………………………………………………………………………………………………………………………………

.

How important is it to them that they are able to help other people?

very quite a little not at all

30. not playing a useful part in things?

A lot quite a bit a little not at all

What, if anything, makes them feel like they are not playing a useful part in things?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make them feel like they are playing a useful part in things?

………………………………………………………………………………………………………………………………………………

.

How important is it that they feel they can play a useful part in things?

very quite a little not at all

31. his/her physical health?

A lot quite a bit a little not at all

What, if anything, makes them worry about their physical health?

………………………………………………………………………………………………………………………………………………

.

57

What, if anything, would make them worry less about their physical health?

………………………………………………………………………………………………………………………………………………

.

How important is it that they feel physically healthy?

very quite a little not at all

We’ve already talked about lots of things: participant ……………………’s feelings, memory and

everyday life. Thinking about all of these things in the last week, how do you think

participant …………………….. would think about…

32. His/her quality of life overall?**

Very good good fair poor

What do you think participant ……………………. currently values with regard to their current

quality of life?

………………………………………………………………………………………………………………………………………………

.

What, if anything, do you think would improve their quality of life overall?

………………………………………………………………………………………………………………………………………………

.

58

Carer’s debrief sheet

A recap of the research:

Thank you for taking part in the research which aims to investigate the differences between health -related

quality of l ife in people with dementia who live at home and who live in care homes. You were asked to fi ll in a

DEMQOL-proxy questionnaire survey which measured the quality of l ife of the person who you care for. You

were also asked to comment on how you think different aspects of their quality of l ife could be improved and

how important you think certain aspects of quality of l ife are to the person you care for.

How will the data be used?

Your data, as well as the data from many other people, will be collected together to answer a series of

questions:

1. Which aspects of quality of l ife are the most important from the view of people with dementia?

2. Does quality of l ife differ between those with dementia l iving at home and those living in care

homes? What can be done about this difference if there is one?

3. Do carers have the same view of quality of l ife as the person with dementia?

Who will have access to the data?

The only people whom will have access to the data are the two investigators of the research. Al l data will be

kept in locked fi l ing cabinets and on a password-protected computer which only the two researchers will have

access to. Randomised codes have been used to match your questionnaire to your carer’s questionnaire.

Individual data will not be identifiable in the research paper and will remain anonymous.

Further questions?

If you have any further questions about the research you can contact the research team via email:

Lucy Hives

MSc Health Psychology student

University of Central Lancashire

Email: LHives@uclan.ac.uk

Rachel Tarling

Registered/Practitioner Health Psychologist

Course Leader MSc Health Psychology

University of Central Lancashire

RTarling@uclan.ac.uk

Have you been affected by this research?

If you have been affected at all by this research or any of the questions asked in the questionnaire, then

please contact the following support groups and helplines:

Alzheimer's Society National Dementia Helpline 0300 222 1122

Can provide information, support, guidance and

signposting to other appropriate organisations.

Alzheimer’s Society Services in Blackpool, Fylde and 01253 312893

Wyre blackpool@alzheimers.org.uk

Alzheimer’s Society Central Lancashire 01772 788700

Support groups for carers and people with dementia, centrallancashire@alzheimers.org.uk

provide information, advise and resources for people

with dementia and their carers, home visits etc.

Thank you again for taking part in this research,

Regards,

The research team.

59

Service user’s Information Sheet

What is the researcher planning to do?

To use the DEMQOL questionnaire to measure quality of life in people with dementia and

compare those who live at home and in care homes.

What is the DEMQOL questionnaire?

The questionnaire measures 5 different categories of quality of life in people with

dementia:

1. Daily activities and looking after yourself

2. Health and wellbeing

3. Cognitive functioning

4. Social relationships

5. Self-concept.

There are 29 questions which require a tick box response.

What will I be asked to do?

You will be asked to consent to taking part in the research by signing the consent form. On

completion of the consent form, you will be asked to fill in a DEMQOL questionnaire.

What will my carer be asked to do?

Your carer will be asked to fill out their own questionnaire to assess what they think about

your current quality of life and how they think it can be improved. They will be asked similar

questions measuring the same categories.

How will my data be used?

Any information you provide will remain confidential and anonymous and will only be used

within this piece of research. Raw data will only be seen by the two researchers and all

sheets will be shredded once the study has concluded.

Can I withdraw my data?

You can withdraw your data at any time whilst you are filling in the questionnaire, and up to

one month after handing it in.

60

Service user’s Consent Form

This form is to check that you have understood all of the information provided to you on

the information sheet and that you have been given chance to ask any further questions

you have regarding the study or your participation.

Have the following points been highlighted?

Please circle:

1. You can withdraw your data from the study at

any time prior to and up to one month after YES NO

handing in your data.

2. All the data from the study will remain

confidential and anonymous and raw data YES NO

will only be read by the research team.

3. You will be asked to fill in a DEMQOL

questionnaire form which require you to YES NO

comment on your own quality of life

4. You will be asked to comment on how you

think your quality of life might be YES NO

improved.

I HAVE UNDERSTOOD ALL OF THE ABOVE INFORMATION REGARDING THE RESEARCH STUDY

AND THEREFORE FULLY CONSENT TO TAKING PART.

Signature:

Date:

61

DEMQOL questionnaire Participant code: ……………………………………….

Mild/ moderate/ severe (delete as

appropriate)

I would like to ask you about your life. There are no right or wrong answers. Just give the

answer that best describes how you have felt in the last week. Don’t worry if some

questions appear not to apply to you. We have to ask the same questions of everybody.

Before we start we’ll do a practice question; that’s one that doesn’t count. In the last week,

how much have you enjoyed watching television?

A lot quite a bit a little not at all

For all of the questions I’m going to ask you, I want you to think about the last week.

First I am going to ask you about your feelings. In the last week, have you felt…

1. Cheerful?** a lot quite a bit a little not at all

What, if anything, made you feel cheerful this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel more cheerful?

………………………………………………………………………………………………………………………………………………

.

2. Worried or anxious?

A lot quite a bit a little not at all

What, if anything, made you feel worried or anxious this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel less worried or less anxious?

………………………………………………………………………………………………………………………………………………

.

3. That you are enjoying life?**

A lot quite a bit a little not at all

What, if anything, made you feel like you were enjoying life this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel like you enjoy life more?

62

………………………………………………………………………………………………………………………………………………

.

4. Frustrated? A lot quite a bit a little not at all

What, if anything made you feel frustrated this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel less frustrated?

………………………………………………………………………………………………………………………………………………

.

5. Confident?** A lot quite a bit a little not at all

What, if anything, made you feel confident this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel more confident?

………………………………………………………………………………………………………………………………………………

.

6. Full of energy?** A lot quite a bit a little not at all

What, if anything, made you feel like you were full of energy this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel like you were full of energy?

………………………………………………………………………………………………………………………………………………

.

7. Sad? A lot quite a bit a little not at all

What, if anything, made you feel sad this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would help to make you feel less sad?

………………………………………………………………………………………………………………………………………………

.

8. Lonely? A lot quite a bit a little not at all

What, if anything, made you feel lonely this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel less lonely?

………………………………………………………………………………………………………………………………………………

.

63

9. Distressed? A lot quite a bit a little not at all

What, if anything, made you feel distressed this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, do you think would help to make you feel less distressed?

………………………………………………………………………………………………………………………………………………

.

10. Lively?** A lot quite a bit a little not at all

What, if anything, made you feel lively this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything would make you feel livelier?

………………………………………………………………………………………………………………………………………………

.

11. Irritable? A lot quite a bit a little not at all

What, if anything, made you feel irritable this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel less irritable?

………………………………………………………………………………………………………………………………………………

.

12. Fed-up? A lot quite a bit a little not at all

What, if anything, made you feel fed-up this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel less fed-up?

………………………………………………………………………………………………………………………………………………

.

13. That there are things that you wanted to do but couldn’t?

A lot quite a bit a little not at all

What, if anything, did you want to do this week?

………………………………………………………………………………………………………………………………………………

.

What, if anything, did you want to do this week, but couldn’t?

………………………………………………………………………………………………………………………………………………

.

What, if anything, do you think stopped you from doing what you wanted to this week?

………………………………………………………………………………………………………………………………………………

.

64

Next I’m going to ask you about your memory. In the last week, how worried have you been

about…

14. Forgetting things that happened recently?

A lot quite a bit a little not at all

If you have been worried about forgetting things, how do you think this can be overcome?

………………………………………………………………………………………………………………………………………………

.

15. Forgetting who people are?

A lot quite a bit a little not at all

If you have been worried about forgetting who people are, how do you think this can be

overcome?

………………………………………………………………………………………………………………………………………………

.

16. Forgetting what day it is?

A lot quite a bit a little not at all

If you have been worried about forgetting what day it is, how do you think this can be

overcome?

………………………………………………………………………………………………………………………………………………

.

17. Your thoughts being muddled?

A lot quite a bit a little not at all

If you have been worried about your thoughts being muddled, how do you think this can be

overcome?

………………………………………………………………………………………………………………………………………………

.

18. Difficulty making decisions?

A lot quite a bit a little not at all

If you have been worried about the difficulty making decisions, how do you think this can be

overcome?

………………………………………………………………………………………………………………………………………………

.

19. Poor concentration? A lot quite a bit a little not at all

If you have been worried about having poor concentration, how do you think this can be

overcome?

………………………………………………………………………………………………………………………………………………

.

65

Now I’m going to ask you about your everyday life. In the last week, how worried have you

been about…

20. Not having enough company?

A lot quite a bit a little not at all

What, if anything, makes you feel like you have enough company?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel like you have enough company?

………………………………………………………………………………………………………………………………………………

.

How important is it to you that you have enough company?

very quite a little not at all

21. How you get on with people close to you?

A lot quite a bit a little not at all

What, if anything, makes you feel like you get on with people who are close to you?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would improve how you get on with people close to you?

………………………………………………………………………………………………………………………………………………

.

How important is it to you that you get on with people close to you?

very quite a little not at all

22. Getting the affection that you want?

A lot quite a bit a little not at all

What, if anything, makes you feel like you are getting the affection you want?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would improve the affection that you get from others?

………………………………………………………………………………………………………………………………………………

.

How important is it that you get the affection you want?

very quite a little not at all

23. People not listening to you?

A lot quite a bit a little not at all

What, if anything, makes you feel like you are being listened to?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make sure you feel listened to?

66

………………………………………………………………………………………………………………………………………………

.

How important is it that you feel like you are being listened to?

very quite a little not at all

24. Making yourself understood?

A lot quite a bit a little not at all

What, if anything, makes you feel like you are understood?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel like you can make yourself understood?

………………………………………………………………………………………………………………………………………………

.

How important is it that you make yourself understood?

very quite a little not at all

25. Getting help when you need it?

A lot quite a bit a little not at all

What, if anything, do you receive help with when you need it?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel like you can get help when you need it?

………………………………………………………………………………………………………………………………………………

.

How important is it that you get help when you need it?

very quite a little not at all

26. Getting to the toilet on time?

A lot quite a bit a little not at all

What, if anything, would make you worry less about getting to the toilet on time?

………………………………………………………………………………………………………………………………………………

.

27. How you feel about yourself?

A lot quite a bit a little not at all

What, if anything, makes you feel good about yourself?

………………………………………………………………………………………………………………………………………………

.

What, if anything, would make you feel better about yourself?

………………………………………………………………………………………………………………………………………………

.

How important is it to you that you feel good about yourself?

very quite a little not at all

67

28. Your health overall? A lot quite a bit a little not at all

What, if anything, do you think is good about your current health overall?

………………………………………………………………………………………………………………………………………………

.

What, if anything, do you think would make you feel better about your health overall?

………………………………………………………………………………………………………………………………………………

.

We’ve already talked about lots of things: your feelings, memory and everyday life. Thinking

about all of these things in the last week, how would you rate…

29. Your quality of life overall?**

Very good good fair poor

What do you currently value with regard to your current quality of life?

………………………………………………………………………………………………………………………………………………

.

What, if anything, do you think would improve your quality of life overall?

………………………………………………………………………………………………………………………………………………

.

68

Service user’s debrief sheet

A recap of the research:

Thank you for taking part in the research which aims to investigate the differences between health -related

quality of l ife in people with dementia who live at home and who live in care homes. You were asked to fi ll in a

DEMQOL questionnaire survey which measured your quality of l ife and also asked you to comment on how

you think different aspects of your quality of l ife can be improved and how important certain aspects of

quality of l ife are to you.

How will the data be used?

Your data, as well as the data from many other people, will be collected together to answer a series of

questions:

1. Which aspects of quality of l ife are the most important from the view of people with dementia?

2. Does quality of l ife differ between those with dementia l iving at home and those living in care

homes? What can be done about this difference if there is one?

3. Do carers have the same view of your of l ife as you do?

Who will have access to the data?

The only people whom will have access to the data are the two investigators of the research. All data will be

kept in locked fi l ing cabinets and on a password-protected computer which only the two researchers will have

access to. Randomised codes have been used to match your questionnaire to your carer’s questionnaire.

Individual data will not be identifiable in the research paper and will remain anonymous.

Further questions?

If you have any further questions about the research you can contact the research team via email:

Lucy Hives

MSc Health Psychology student University of Central Lancashire Email: LHives@uclan.ac.uk

Rachel Tarling

Registered/Practitioner Health Psychologist Course Leader MSc Health Psychology University of Central Lancashire RTarling@uclan.ac.uk

Have you been affected by this research?

If you have been affected at all by this research or any of the questions asked in the questionnaire, then

please contact the following support groups and helplines:

Alzheimer's Society National Dementia Helpline 0300 222 1122

Can provide information, support, guidance and

signposting to other appropriate organisations.

Alzheimer’s Society Services in Blackpool, Fylde and 01253 312893

Wyre blackpool@alzheimers.org.uk

Alzheimer’s Society Central Lancashire 01772 788700

Support groups for carers and people with dementia, centrallancashire@alzheimers.org.uk

provide information, advise and resources for people

with dementia and their carers, home visits etc.

Thank you again for taking part in this research,

Regards,

The Research Team.