raising awareness final

7/31/2019 Raising Awareness Final

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Raising Awareness of Milton Keynes Community HealthDementia Services within Black and Minority Ethnic

Communities in the city

When I look back now, I suspect there may be some truth in the speculation that dementia

may present in the body for quite some time before it is capable of diagnosis

(Terry Pratchett 2008).

Valerie Freestone RMN

Community Psychiatric Nurse

Milton Keynes Community Health Services


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Valerie Freestone Community Psychiatric Nurse Dementia Services 2012

Acknowledgements

I would like to acknowledge the support for this award given by the Department of Health

and NHS Employers.

I would also like to take this opportunity to thank all those who have supported me with this

study.

Firstly, and most especially, I would like to thank the community groups who welcomed me

and gave their time by sharing their experience and understanding of dementia.

Secondly, my manager Elaine Liburd who supported me from the very beginning,

encouraging and cheer leading all the way through the process.

And lastly, a huge thank you must go to my mentors Gail Adams and Vanessa Heaslip,

and the other members of the Mary Seacole Steering group, for believing in me throughout

- even when I doubted myself the most.


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Executive Summary

Goldberg and Huxley (1980) describe a pathway into secondary mental health services

where the first step is recognition of the illness by people within a community. Even though

national guidance advocates early diagnosis and intervention as beneficial to people with

dementia (Department of Health 2009; Alzheimers Society 2012; National Institute of Healthand Clinical Excellence 2006; and Social Care Institute of Excellence 2006), people from

BME communities are less likely than their white British counterparts to access dementia

services (Daker-White et al. 2010).

Shah and Adelman (2009) suggest that this may be because people from BME communities

are not familiar with the symptoms of mental disorder and therefore dismiss them as a

function of old age. This lack of recognition of dementia results in delays to people accessing

specialist services. Studies by Parker and Philip 2004; Banajee and Wittenberg 2009;

Beeston, accessed (August 2012) recognise that early intervention allows people with

dementia and their families to plan for the future and access support and treatment, whilst

reducing the financial burden. This project plans to address this gap by increasing the

knowledge of dementia within specified Black and Minority Ethnic (BME) communities in

Milton Keynes, as well as raising awareness of Milton Keynes Community Dementia

Services.

Accessing dementia services enables people to benefit from a pathway of care that delivers

assessment, diagnosis, treatment, care and support (Department of Health (DOH) 2009). If

dementia is diagnosed early, then the person with dementia and their family has the

possibility of planning their future or accessing available help, support and treatment (social,

psychological and pharmacological) (Banerjee and Wittenberg 2009).

The project supports Milton Keynes Community Health Service in meeting Objective 1 and 2

of the National Dementia Strategy (DOH 2009). By engaging with local BME community

groups, raising awareness of dementia and gathering information, it was possible to produce

a range of culturally relevant posters and postcards promoting the Milton Keynes Dementia

Service. Meetings with community groups also facilitated discussion about available services

when requested.

The poster was developed following participants feedback and used information from the

published literature on dementia as well as national guidance. The main themes were:

Lack of knowledge of dementia

Lack of knowledge of dementia services.


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Dementia affects cognitive skills and a person with the illness will take longer to process

information, find it difficult to make complex decisions and find too many choices confusing

and frustrating (Alzheimer Society 2012). To ensure that the posters were accessible to

people with dementia they were kept simple and focused on the main belief as expressed by

the participants; Its all just part of old age and nothing can be done. The project challenged

this through discussion and the poster stated that dementia is not just an inevitable part of

old age and that there is much that can be done to help people. It was important to show

people with dementia and their carers what support is available so it was decided to create

complementary postcards so that more details about the services could be shared.

Dementia services in Milton Keynes are evolving, and it is important to recognise the need

for continued work with BME communities to raise awareness of dementia and services that

are available. This report recommends that further work needs to be done to create links

with other groups in the city, promoting the importance of early recognition and diagnosis of

dementia for all.


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Contents Page

Chapter 1 List of figures and tables 5

Chapter 2 Introduction 6

Chapter 3 Project context 8

3.1 Definition of dementia 8

3.2 National prevalence of dementia 8

3.3 Demographics 8

3.4 Financial cost 9

3.5 The prevalence of dementia within BME communities 9

3.6 The importance of early diagnosis 10

3.7 National guidance 11

3.8 Background reading 12

3.9 Talking Mats 14

3.10 Local picture 16

Chapter 4 Aims and objectives 19

Chapter 5 The Project 20

5.1 The Tamil community 21

5.2 The Bangladeshi community 22

5.3 The Irish community 23

5.4 The Pakistani community 24

Chapter 6 Findings 27

Chapter 7 Conclusion 29

Chapter 8 References 33


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Chapter 1 List of figures and tables

Figure 1 An example of talking mats 15

Figure 2 National and local figures 16

Figure 3 Talking mats completed with client 25

Table 1 Economic burden of dementia 9

Table 2 BME communities and dementia 10

Table 3 Dementia reports and publications 11

Table 4 Goldberg and Huxleys pathway into care (1980 cited

Shah & Adelman 2009)

13

Table 5 Benefits of communication 14

Table 6 Ethnic composition Milton Keynes 2009 17

Table 7 Image used and response 25

Table 8 Findings from the community meetings barriers to

care/poster design

27

Table 9 Background reading barriers to care/health promotion 28

Table 10 Communicating with people with dementia 28


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Chapter 2 Introduction

Goldberg and Huxley (1980) describe a pathway into secondary mental health services

where the first step is recognition of the illness by people within a community. There is a

great deal of national guidance advising that early diagnosis and intervention is beneficial to

people with dementia (Department of Health 2009; Alzheimers Society 2012; NationalInstitute of Health and Clinical Excellence 2006; Social Care Institute of Excellence 2006).

Various studies concur with this principle (Parker & Philip 2004; Banajee & Wittenberg 2009;

Beeston, D., accessed August 2012) suggesting that early diagnosis will allow access to

care and support when this is most beneficial i.e. when people can still make decisions

about their future and possible treatments. People from BME communities are less likely

than their white British counterparts to access dementia services (Daker-White et al 2010).

Shah & Adelman (2009) suggest that people from BME communities may not be familiar

with the symptoms of mental disorder and just dismiss them as a function of old age. This

lack of recognition of dementia may delay the first step to accessing specialist services. This

project will address this by raising awareness of Milton Keynes Community Dementia

Services.

Seven years on from the launch of the National Service Framework for Older People (2001)

the Department of Health (DOH) began to develop the National Dementia Strategy which

was finally published in 2009.

Its aims were to provide a strategic framework within which local services could deliver

quality improvements to dementia care. Also, through providing early diagnosis, intervention

and treatment , they could address health inequalities encountered by people with dementia.

Dementia is one of the two most common mental disorders in old age, and its prevalence in

BME communities is similar to, or higher than that of, the indigenous, white British population

(Shah and Adelman 2009). People from BME groups are generally under represented in

mainstream dementia services (Daker-White et al. 2010; Shan and Alderman 2009), despite

a high general practice registration and consultation rates. Bowes and Wilkinson (2003)

concur that people from BME communities are less likely to access dementia services, and

the reasons given include; little knowledge of dementia and lack of awareness of

mainstream services.

Banerjee and Wittenberg (2009) suggest that if dementia is diagnosed early people can plan

their future, have a say in, and make decisions about, what interventions, support and

treatment they wish to accept. They also note that when a diagnosis is made late it reduces

the choices available to people with dementia as it is often made at times of crisis when


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decisions are made for, instead of with, the person with dementia. This situation could have

been avoided if the diagnosis had been made earlier.

This project aimed to address this by exploring perceptions of dementia and dementia

services through discussion with community groups, leading to the development of a

culturally competent poster that would raise awareness of Milton Keynes Dementia Services.

Meetings were held with participants in homes, lunch clubs and in one NHS premises. The

meetings also allowed discussion about signs and symptoms of dementia along with

signposting of services available (as appropriate), reassuring participants and improving

previously established links.


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Chapter 3 Context of Project

3.1 Definition of Dementia

The Alzheimers Society (2012) defines dementia as a set of symptoms that include loss of

memory, mood changes and problems with communication and reasoning. There are many

types of dementia; the most common are Alzheimers disease and vascular dementia

(Alzheimers Society 2012). Dementia is progressive which means that the symptoms will

gradually get worse over a period of time. Alongside this decline, people may also develop

behavioural and psychological symptoms such as depression, psychosis, aggression and

wandering (Department of Health 2009).

3.2 National prevalence of dementia

Dementia can affect people of any age, but it is most common in older people with one infive people over 80 and one in 20 over 65 having a form of dementia (Knapp 2007). The

Department of Health (2009) recognised that dementia is one of the most severe and

devastating disorders that is currently faced by individuals, as well as being one of the most

common.

There are well established prevalence rates for dementia in the United Kingdom (UK)

(Alzheimers Society 2012) these are:

40-64 years : 1 in 1,400 people

65-69 years: 1 in 100 people

70-79 1 in 25 people

80+ years: 1 in 6 people

The prevalence of dementia increases with age, doubling with every five-year increase

across the age range (Knapp 2007).

3.3 Demographics

There are approximately 800,000 people with dementia in the UK and there are estimated to

be 670,000 family and friends acting as primary carers (Alzheimers society 2012). An

estimated 21 million people in this country know a close friend or family member with

dementia which equates to 42% of the population (DOH 2012). In England alone 570,000

people will have a diagnosis of dementia (Alzheimers Society 2010).

3.4 Financial cost

The progressive nature of dementia increases the risk of physical health problems, which in

turn, increases dependence on health and social care and/or family and friends who provide


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unpaid care as well as within the wider society causing a significant financial burden

(Dementia 2010). The approximate cost of dementia to the UK currently stands at 23

billion, about 8 billion of which is hidden in the support offered by family and friends

supporting individuals with dementia at home. It is projected that costs will exceed 50 billion

per year by 2038 (Knapp 2007). Overall, the cost of dementia already exceeds that of

cancer, heart disease and stroke combined at an average cost per person, per year of

25,472. The Dementia 2010 (Alzheimers Research Institute 2010) report identified that

despite the high economic burden of dementia, diagnosis and treatment rates remain low in

the UK (see table 3).

Table 1: Economic Burden of Dementia

Economic Burden Of Dementia

37% of all UK dementia patients are in long term care costing > 9 billion a year Health care costs (44% of which are hospital stays) 1.2 billion a year

Unpaid care provided by friends and family 1.5 billion

(Valued at 12 billion if publicly funded)

Cost in lost productivity 29 million

= 23 billion in terms of health and social care, informal care and loss of productivity

Adapted from Dementia 2010

Early diagnosis and intervention can help reduce the economic burden of care. Banerjee and

Wittenberg (2009) analysed a memory assessment service and suggested that services only

need to promote an improvement in quality of life by a modest amount, and divert 10% of

people with dementia away from residential care, to be cost effective.

3.5 Prevalence of dementia within BME communities

There are no national statistics on the prevalence of dementia within BME groups although

the Alzheimers society (2012) estimates that there are 11,000 people from BME

communities with dementia (see table 2).


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Table 2: BME communities and dementia

BME Communities and dementia

It is estimated that there are at least 11,000 people from BME groups with

dementia.

6.1% of people with dementia among BME groups are young onset compared

with 2.2% for the UK population as a whole, reflecting the younger age profile

of BME communities.

Data on young onset cases in the UK population are based on referral to

services which can significantly underestimate the numbers.

The proportion of older people from BME groups in the UK is small but it is

increasing steadily as the population rises.

Alzheimers Society 2012

3.6 The importance of early diagnosis

The National Dementia Strategy, the National Institute of Clinical Excellence (NICE), The

Social Institute ofClinical Excellence (SCIE), and the Alzheimers Society all advocate the

importance of early diagnosis.

Early diagnosis and treatment should be the rule rather than the exception and

allows for access to specialist care, support and treatment (DOH 2009).

People with Mild Cognitive Impairment (MCI) should be referred to memory

assessment services to aid early diagnosis of dementia as 505 of people with MCI

will later develop dementia (NICE/SCIE 2006).

Receiving a diagnosis of dementia allows people with dementia to make choices

providing access to services and medication that will support them to remain in

control of their life for longer (Alzheimers Society 2012).

Contrary to social misconceptions, there is much that can be done to help people with

dementia and the people who care for them (NICE/SCIE 2006). Early diagnosis and

intervention allows access to specialist dementia services, which deliver improving outcomes

for service users and unpaid carers (NAO 2007). Currently, about one-third of people with

dementia receives a formal diagnosis or have contact with specialist services at some point

in their illness (DOH 2009).


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Public and professional attitudes to dementia can be a barrier to diagnosis and the receipt of

good quality care. The stigma of this illness prevents discussion as there is a false belief that

nothing can be done and that it is a normal part of aging (DOH 2009). The government s

dementia strategy was written to address these issues and ensure that all people who need

it will receive an early diagnosis which is delivered with sensitivity to ensure they will accept

care, treatment and support when needed.

3.7 National Guidance

A number of reports and guidance recognising the importance and scale of dementia have

been produced by both statutory and voluntary bodies (see table 3);

Table 3: Dementia reports and publications

Publishing Body Year ReportDepartment of Health 2001

2005

2005

2009

National Service Framework (NSF) for Older

People

Everybodys Business- integrated mental

health services for older adults: a service

development guide.

Securing Better Mental Health for Older

Adults

National Dementia Strategy

Audit Commission 2000 Forget Me Not: Developing Mental Health

Services for Older People in England

National Institute for

Clinical Excellence

2001 & 2007

2006

NICE guidelines for cholinesterase inhibitors

NICE guidelines for dementia

KCL & LSE 2007 Dementia UK report

Kings Fund 2008 Paying the price

Alzheimers Disease

International

2011 World Alzheimers Society

Alzheimers Society 2012 Alzheimers 2012 a National Challenge

DOH 2012 2012 Prime Ministers Challenge on Dementia

Source adapted from Aldeman (2009)

As far back as 2001, The National Service Framework (NSF) for Older People (DOH)

recognised that mental health problems may be perceived, by older people, their families,

and by professionals, as an inevitable consequence of old age and something for which very

little could be done. The NSF suggested that mental health services for older people should

promote good mental health, provide recognition and management of mental health


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problems and allow access to specialist care. The NSF also recommended that early and

accurate diagnosis of mental health problems would enable older people and those caring

for them to understand what is happening to them and to access appropriate help and

support. The report affirmed that for people with dementia, early diagnosis allows for the

planning of future care and helps individuals and their families to come to terms with the

prognosis, as well as aiding understanding of the changes in memory, behaviour and

personality associated with the disease.

In 2005, a review of mental health services (DOH 2005) for older people was undertaken

which recognised that, although there had been some significant improvements in care,

following the development of both the NSF for mental health (DOH 1999) and the NSF for

older people (DOH 2001), there were still challenges to be faced and the securing better

mental health for older people initiative was launched. The review reiterated the need for

effective interventions for older people with mental health problems to improve their quality

of life and to promote independence and inclusion.

Two years later in 2007, aware that significant improvements in dementia were still required

the government announced the development of the National Dementia Strategy. The

strategy covered three key areas: improved awareness; earlier diagnosis and intervention,

and a higher quality of care. The strategy recognised that people from all ethnic groups are

affected by dementia and that the number of people with dementia is set to rise sharply.

For more than a decade national guidance has recommended early diagnosis and

intervention for people with dementia, regardless of gender, age or ethnicity. Yet a recent

report from the Alzheimers society (Dementia 2012), noted that quality of life for people with

dementia and their carers remains varied with people still facing a battle for diagnosis and

support. Acknowledging previous data from the Alzheimers Society (2011) the report states

that only 43% of people with dementia have a formal diagnosis. The report does recognise

that this is a best guess estimate comparing dementia prevalence rates with numbers of

people on GP dementia registers.

3.8 Background reading

A study byShah and Adelman (2009) suggest that the discrepancy between people seen in

general practitioner surgeries and in secondary mental health services can be understood by

using Goldberg and Huxleys pathways into care (1980). The pathway into secondary mental

health service can be viewed through a series of stages see table 4;


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Table 4. Goldberg and Huxleys pathway into care (1980cited Shah & Adelman 2009)

The writers suggested that people from BME groups may not recognise the symptoms of

dementia and dismiss them as part of old age. They recognise that a lack of awareness and

knowledge of how to access services may also account for the low numbers. They

recommend the use of public awareness campaigns at a local level promoting the

importance of early recognition and the need to seek help early to improve outcomes by

providing access to services and support. The authors also acknowledge that an inability to

access services may be further compounded if the patient is unable to communicate

symptoms of mental illness to family members and/or the GP due to lack of appropriate

vocabulary or fluency in English.

Bowes and Wilkinsons (2003) study with South Asian elders with a diagnosis of dementia

and their carers identified that participants generally had a negative response to their

experience. They described the group as having little knowledge of the illness and what

could be done to treat, support and improve quality of life. The participants felt isolated from

services, the community and family life. The participants consulted their GP when they

noticed changes in behaviour and memory or during routine investigations. Bowes and

Wilkinson (2003) concluded that there was a distinct lack of knowledge of dementia and that,

although this was similar to the general population, there were culture and language issues

that may have increased the difficulty in recognising and naming the illness which created

barriers to care.

The Bridging the Gaps project (HACT 2007) provided grants to projects in the UK in anattempt to establish sustainable solutions to social exclusion of BME groups. One project,

entitled The 1990 Trust interviewed 278 South Asian elders and identified that access to

information was critical The elders from the community suggested that leaflets in their own

language were not enough and that they needed someone to visit them and explain local

services.

In accepting that stage 1 of the pathway into secondary mental health services (Goldberg

and Huxley 1980 citedShah & Adelman 2009) is the first appearance of the illness then it

can be deduced that if the illness is not recognised then help will not be sought. Research by

Bowes and Wilkinson (2003) shows that people from BME groups have little knowledge of

The Pathway to Secondary Mental Health Services

Stage 1 First appearance of an illness in a community

Stage 2 Consultation with general practitioner (GP)

Stage 3 Identification and management of illness by (GP)

Stage 4 Referral to secondary mental health service

Stage 5 Identification and management of illness by secondary care.


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dementia, whereas Bhui and Bhugra (2002) suggest that people will only engage with

services if they believe symptoms are health related and that they can be treated. It is vital

that symptoms are recognised and understood as not being part of the normal ageing

process if people are to access appropriate services.

Shah and Simon (2007) suggest there is a need for public education campaigns at local,

regional and national level, that target early recognition of the signs and symptoms of

dementia and highlight the importance of seeking help early in order to improve outcomes.

There is also a need to make people aware of the availability of treatments and services.

Since the nineteenth century, messages on posters, the radio and, more recently the

internet, have been used to educate the public and persuade them to live a healthy life

(Robertson 2008). In 2005/2006 the government spent more than 30 million on advertising

campaigns (Hansard 2007 cited in Robertson 2008).

The Office of Communication (2010) published the book Making Health Communication

Work which that suggests that communication alone can (See table 5)

Table 5: Benefits of communication

Communication both verbal and written can;

Increase the intended audiences knowledge and awareness of a health issue,

problem or solution.

Influence perceptions, beliefs, and attitudes that may change social norms.

Prompt action.

Demonstrate or illustrate healthy skillsreinforce knowledge, attitudes, or behaviour.

Show the benefit of behaviour change.

Advocate a position on a health issue or policy.

Increase demand or support for health services.

Refute myths and misconceptions.

3.9 Talking Mats

Benbow and Jolley (2012) remind us that dementia is not something that affects other

people and that many of us will be touched by it at some time. They argue that we should

not exclude people with dementia but ensure that they are able to express their thoughts and

feelings and that their voices are heard and respected. It is imperative that people with

dementia should have their voices heard especially in service improvement projects

NICE/SCIE (2006).


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Talking Mats is a low technology communication framework used to help people with

symbols, placed on a textured mat that allows people with dementia to focus on the

topic.communication difficulties express their views (Murphy et al 2007). It uses a simple

system of picture

Figure 1 An example of talking mats

Source: Using Talking Mats to Help People with dementia Communicate (2007)

A research project carried out by Joan Murphy and Tracey Oliver (2010) at the Talking Mats

Research and Development Centre reported that people with dementia found that the mats

helped them clarify ideas, express their views and convey their thoughts about different

aspects of their lives. The project lasted for 21 months and involved 18 couples, one of

whom had dementia and the other who was a family carer. The project focused on various

activities of daily living.

A key point from a similar project carried out by Murphy et al (2007) found that people with

early and middle-stage dementia could use Talking Mats effectively. People with late-stage

dementia showed improvements when communicating with Talking Mats, but not everyone

with late-stage dementia could use Talking Mats effectively.

This project included a client already in dementia services and aimed to collect their views

on the poster and also on their experience of being part of the service.


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3.10 The local picture

Milton Keynes is the largest of the 32 new towns created in Britain and Northern Ireland

since 1946. The city has a relatively young population compared to the rest of the UK, but

this is set to change within the next 25 years (Milton Keynes Observatory 2012). The

population is steadily growing and rose from just over 50,000 in 1967 to over 250,000 in

2009 (Population Bulletin 2011/2012). Figures from the Office for National Statistics (ONS)

suggest that around 19.5% of the population are from a BME group (2009). The numbers of

people with dementia in the city are likely to rise significantly within the next decade.

Fig. 2: National and local figures

Source Milton Keynes Joint Dementia Strategy.

The largest BME groups are Asian comprising 6.1% of the total population (see table 2).

Most ethnic groups are spread across the city although some are less so. People from

Bangladesh tend to live in Bletchley and Fenny Stratford, whilst a large number of people

from Pakistan live in Wolverton.


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Table 6: Ethnic Composition Milton Keynes 2009

UK% England%

White British 80.5 82..8

Irish 1.2 1.1

Other White 3.4 3.6

Mixed Ethnicity 2.4 1.8

Asian/Asian British Indian 3.5 2.7

Pakistani 1.8 1.9

Bangladeshi 0.8 0.7

Black/Black British Black Caribbean 1.1 1.2

Black African 2.1 1.5

Other Black 0.3 0.2

Chinese/Other Chinese 1.3 0.8

Other 0.8 0.8

Total 100.0 100.0

Source population bulletin 2011/2012

Milton Keynes Community Health Services are in a process of transformation, creating a

brand new Community Dementia Service out of its day assessment service and community

mental health teams. The service includes a Memory Assessment Service and a Community

Dementia Team. This project is important because it addresses the need to raise

awareness of Milton Keynes community dementia services and increase the knowledge of

how to access services - enabling people to receive assessment, accurate diagnosis and

access to care services. The Milton Keynes joint dementia strategy sets out a plan for the

next three years to meet the future needs of the increasing population of adults with

dementia. Its aim is to focus dementia care on community based support, giving service

users more choice and control.

The eight strategic objectives include:

To work closely with partners to actively promote awareness and information

about dementia.

To provide timely and current information about dementia, enabling early

intervention, assessment and diagnosis and allowing access to high quality

client appropriate support and advice.

This project supports the above objectives and is included in the joint commissioning

strategy as a way of supporting health and social care to engage with ethnic minority groups

raising awareness and improving access to services.

Some local work is currently being undertaken by health services to target and

engage the BME community via an information and poster campaign about the


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importance of early intervention and assessment. Information will be available in

various languages common in Milton Keynes across locations such as GP

surgeries, community and faith centres and ethnic food shops. This campaign aims

to remove cultural stigma associated with dementia and to provide people with

information about assessments and follow on support available.

Milton Keynes Joint Dementia strategy 2011//2014


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Chapter 4 Aims and Objectives

The aim of this project was to improve access to Milton Keynes Community dementia

Services for members of four BME group; namely the Tamil, Bangladeshi, Pakistani and Irish

communities. In doing so it supported Milton Keynes Community Dementia services in

addressing objective 1 and 2 of the National Dementia Strategy (DOH 2009).

Objective 1: improving public and professional awareness

and understanding of dementia. Public and professional

awareness and understanding of dementia to be

improved and the stigma associated with it addressed.

This should inform individuals of the benefit of timely

diagnosis and care, promote the prevention of dementia

and reduce social exclusion and discrimination. It shouldencourage behaviour change in terms of appropriate

health seeking and provision.

This project addresses objective 1 through open dialogue with the participants of the

community groups about the signs and symptoms of dementia and the support available

during the meetings. Follow up sessions are offered to facilitate a more detailed discussion of

dementia.

Objective 2; Good quality early diagnosis and intervention

for all. All people with dementia to have access to a

pathway of care that delivers: a rapid and competent

specialist assessment; and accurate diagnosis sensitively

communicated to the person with dementia and their

carers; and treatment, care and support provided as

needed following diagnosis.

This project addresses objective 2 by raising the awareness of dementia services in MiltonKeynes within four BME community groups in the city.


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Chapter 5 The Project

Due to my lack of experience of academic writing and formal research studies, I decided to

undertake a service improvement project. Discussion with my mentors and the clinical

governance team affirmed that ethical approval would not be required but that my project

should be lodged with the clinical governance team.

Initially, I had decided to make contact with eight of the main BME groups in the city,

however very early on in the project, following discussion with my mentors about the length

of the project and what was practical to achieve, it was decided that I should reduce this

number to a maximum of three community groups which were the Tamil, Bangladeshi and

Pakistani communities. By meeting with groups where good links had already been

established by our BME development worker, it was felt that time constraints of the project

would be met.

Following a read through of the literature it became apparent that elders from the white Irish

population were recognised as being reluctant to engage with mental health services.

Following discussion and agreement my mentors I decided to add them as a fourth BME

group.

My colleague introduced me to members of the community and I was invited along to lunch

clubs in the Tamil, Pakistani and Irish communities. A meeting was also arranged with four

younger women who were all active within the Bangladeshi community within a local NHS

unit. I was also able to meet with a carer from the Pakistani community who looked after her

mother-in-law, who was already in contact with services. A client from the Irish community

already using the services agreed to look at the poster/postcard and give her feedback both

on the design and on her experience before and after accessing services. She agreed to use

Talking Mats as an aid to communicating her thoughts and feelings.

During the meetings I explained my role; that I was undertaking a poster design project to

raise awareness of dementia and dementia services in Milton Keynes and that I would like

their input so that posters would be of benefit to them. I also wanted establish whether or not

their views on dementia and barriers to dementia services reflected that of the existing

literature and policy. All the participants were interested to learn more about dementia and to

support the development of the posters. My colleague was able to attend three out of the five

meetings with me and acted as scribe, on the other two occasions I took notes myself. These

notes were used to collate ideas to support the poster design.

Discussions took place to gain insight into the participants understanding of dementia;

whether they were aware of the help that was available as well as exploring why people from

their communities might not access services.


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I felt it was very important to use the sessions to address any questions from the participants

so they were not worried or fearful when they left, but instead were aware that help was

available if they had any concerns. Participants from the Irish community group asked if I

would return to give a talk at a later date.

Although the discussions were informal, through them I was able to address the questions

that would support the development and introduction of the posters. The questions reflected

available literature and policy context and included the following:

What is your understanding of dementia?

Is there a word in your community for dementia?

Are you worried about your memory?

Having stated that we did not see many people from BME communities in the

dementia services could they offer any explanation about why this might be the case?

What information and support did they think people need?

Alongside understanding the participants knowledge of dementia, I also wanted to know

what they felt would be useful on the posters and if there was anything that they would not

want to see presented on a poster. The discussion also involved where to place posters once

they had been produced.

5.1 The Tamil Community

I attended a Tamil lunch club held in a local church; there were approximately 20 people

there 10 men and 10 women who were either attendees or helpers. All were willing to take

part and happy for their ideas to be part of the poster design. I was supported by my

colleague who acted as a scribe and a respected member of the local community who acted

as interpreter. The member of the local community who acted as interpreter knew the

participants well and was able to encourage them to take an active part.

The participants talked generally about old age as well as what they knew about dementia

and what was important with regards to the information they would like on a poster. Some of

their thoughts regarding old age centred on adjusting to a changing culture, with comments

such as;

Its hard living with children and grandchildren who have grown up in the west. There is not

the same respect that there would have been at home.

We are trying to fit into a different way of family life.


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We want to be able to help our families but we dont know how.

Its hard coping with being old butalso living with the memories of civil war suffering with

post traumatic shock.

Whereas their thoughts regarding dementia centred around forgetfulness and normalising of

the disease.

Its like getting off a bus and not knowing where you are.

Forgettingthings is just part of old age

Is there really any help out there-isntit something that happens to everyone.

I was able to attend a review with a colleague that involved a member of the Tamil

Community it was an opportunity to see how Talking Mats might work as a communicationaid prior to using them with a member of the Irish community later in the project. We were

also accompanied by an interpreter who had met and worked with the woman on a previous

occasion. The lady had moderate to advanced dementia and had recently been admitted to a

residential home and the purpose of the review was to see if she was happy there. The

Interpreter explained why we were there and showed her the Talking Mats. There was some

benefit from using the Talking Mats as they helped focus on the question, but she was

unable to remain in the present day and continually related the questions to her childhood.

Research has suggested that Talking Mats are most beneficial when communicating with

people with early to moderate dementia (Murphy et al. 2007). The reviewer found that they

were a useful tool because, having planned which images to use, she was able to focus on

the questions she needed to ask.

5.2 The Bangladeshi Community

The meeting with the four younger members of the Bangladeshi community, all of whom are

active within their communities, took place in a local NHS premises. This session followed aslightly different format with members talking about things are for for younger members of

their community who are looking after their elders and why they felt elders did not access our

services. They told us a range of things.

People think its just part of old age.

Daughter in laws do the looking afterbutthey wont always ask for help.

Families are so busy that elders dont want to feel a burden.

People worry about what others think.


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Members of the group had very clear ideas how the posters could be used to support elders

from their community to access dementia services.

Any images must be modest, Ive just helped do some maternity leaflets where they wanted

to use pictures where the bump was exposed. I told them that this would not be appropriate.

Pictures should be of all cultures so that people dont feel like they are being singled out.

They should say what help is available -for instance help with benefits.

They need to be displayed in places where the community already goes, for example sure

start buildings orlocal play groups.

You need to have the poster in English as well as our language as if someone is worried

about their memory they are more likely to ask a grandchild to explain what the poster says

rather than their busy daughter in law and they will probably read English.

People need to know its alright to ask for help.

If you can get one family to come along you will get others as the word will soon spread.

5.3 The Irish Community

The Irish lunch club is a large mixed group of approximately eighty people. Members were

asked prior to my visit if they would like to take part in a discussion about dementia and

dementia services. On the day I met with a group of 12 people, male and female, which also

included helpers all of whom were interested to know more about dementia.

Members of the Irish community initially felt that they did not have a problem with accessing

services, however during the discussion the participants then articulated a number of issues.

My father had it Im scared to think about whether or not I might have it Id rather not know.

I didnt know there was any help out there.

Surely it happens to everyone.

Its just part of old age.

You just have to put up with it.

My daughters only young and she says dont worry mum Im always forgetting things too.

They provided some clear recommendations regarding the poster development.

It needs to how what help is out there.


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It needs to show who to contact.

It shouldnt be full of pictures of old people.

I had an existing client from the Irish community who had agreed to give me feedback on

both the poster/postcard and on her experience of being involved with our service. The

meeting with my client at took place at her home and I started by reminding her why I was

there and explained that we were going to look at the posters and get her views. I showed

her the Talking Mats and explained that they were used to help people with dementia

communicate their thoughts and feelings. I explained that we were going to use a set of

pictures to depict various aspects of our service and that I wanted her to use the top cards

which depicted a smiley face, a sad face and an ambivalent face to show how she felt about

them.

I dont really feel unsure about things they either make me happy or sad.

I asked her to talk about how she had felt when she realised that she was having problems

with her memory before she had come into contact with our service

I felt ashamed I did not want other people to know in case they thought I was stupid.

I had decided which images I was going to use before the visit choosing pictures that

depicted elements of our service.

Talking Mats uses a series of pictures to focus discussion and improve communication. I

found them very useful when discussing the project with my client. They allowed me to focus

on the topic prior to the meeting by matching the available pictures with the question I

wanted to ask. I chose a variety of pictures and made a note of her responses (see next

table).


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Table 7: Image used and response

Talking Mat Image used and response to question

Memory.I didnt want people to know in case they thought I was stupid, I didnt want to askfor help as I felt quite scared.

Your safety. I feel safe now knowing that I have the support of people visiting me theyreassure me that Im not stupid. I know where to go to get help.

Talking to people.Im not sure where to put that picture. It helps knowing that you are allhere to talk to but I dont like talking to my family about it because they think Im stupid. Ill putit in the happy bit though as Its good to talk to you.

Chatting. I like going to the day centre no one thinks there is anything wrong with me there,some people there are very slow and I think its OK just be patient, and then I think peopleprobably think that about me.

General health. That is OK

Medication. I didnt want to take medication I didnt think it would help but you explained thatit would and now I would not want to be without it. I know it does help.

Staff. I have had such a lot of support from you all and from the doctor. I feel sad when Idont see anyone.

Accepting help. I really dont like that as I like to be independent that is definitely under thesad face.

Where you live. I dont like it here anymore. I like my house but I dont like being with myhusband.

Figure 3: Talking Mats completed with client

My client found the Talking Mats a very useful tool and she felt very positive when she could

see all the benefits that she had from being with our service.

We then looked at the posters to see what she thought of them.


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I think its a very good idea but Im not sure I would have taken any notice of it as I did not

want to think I had any problems. I was too ashamed to admit that I had anything wrong with

my memory, but I feel so much better now though and I think other people will find them

useful and I hope they ask for help.

We looked at the idea of a post card and I asked her if she would pick one up if she saw one.

I would and I would keep one to give to someone else who might be worried about their

memory and encourage them to get help.

5.4 The Pakistani Community

The meeting with the carer from the Pakistani community took place in her own home and

she told me about her experience of accessing services for her mother in law, as well her

thoughts as to why other members of her community may not access services.

I knew something wasnt right she kept repeating herself and forgetting what she had done.

I knew I had to take her to my GP. My mother in Birmingham also has dementia and she

was having help.

I struggled to get my doctor to refer her as he thought there was no point because of the

language but I said I would go with her.

Im quite articulate and I knew where to go. I think other people from my community might

not find it so easy and would not know how to ask for help.

Its important to know that there is help out there. Looking after someone with dementia is

very hard work and I cannot go out unless my sons are here to look after her.


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Chapter 6 Findings

From the discussions that I had with all the individuals from the different community groups I

collated information that I was able to put into two broad themes; barriers to care and

knowledge of dementia.

As the numbers of people were small I felt it was important that the posters should reflect the

information I gained from my background reading of national guidance, journals and books.

These ideas influenced the design of the posters although a decision was made to keep the

posters simple to make understanding them easier for people with dementia. Adding too

much detail to the poster looked confusing and difficult to understand.

The central themes noted by the participants of the community groups, were a lack of

awareness of dementia and a belief that it is just part of old age and that nothing can be

done. It also became apparent that participants were, on the whole, unaware of local

dementia services. It was clear that the posters needed to address the fact that dementia is

not just part of old age and that there is action that can be taken to help people.

The original concept of the project had been to design culturally relevant posters. The aim

was to keep the posters accessible to people with dementia so they included a small number

of simple statements and were not too cumbersome and complex. Therefore a

complimentary postcard was designed to accompany the posters but with more detail of the

services offered by community dementia services.

The posters and postcards were created from the information gathered during the meetings

which had highlighted what were seen as barriers to care as set out in tables 8-12


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Table 8: Findings from the community meetings barriers to care/poster design

Barriers to Care Poster Design

Little knowledge of dementia

Symptoms of dementia seen as an

inevitability of old age

Something that just have to be lived with

There is nothing that can be done

Not wanting people to know

Not recognising there is a problem

Feeling like it should be managed withinthe home, not wanting to ask for help

Little knowledge of what help is available

Posters should be culturally sensitive

Posters should use multi-cultural imagery

so that community elders did not feel leftout

Information should include supportoffered

They should say who to contact

Text should be in English as well as locallanguage so that younger children couldread them if needed (Bangladeshi

community)

Posters should not be too large so thatthey can be handed out to members ofthe community, as they did not have apermanent base to display them (TamilCommunity)

Table 9: Background reading barriers to care/health promotion

Barriers to care Health Promotion

Little knowledge of dementia

Knowledge of poor experiences of othersin their communities where support hasbeen needed but not been available

Lack of awareness of mainstream

provision

Perceived cultural inappropriateness ofmainstream provision

Increase the intended audiencesknowledge of health issue or problemand solution

Influence perceptions, beliefs, andattitudes that may change social norms

Prompt actions

Demonstrate or illustrate healthy skills,reinforce knowledge, attitudes, orbehaviour

Show the benefit of behaviour change

Advocate a position on a healthy issue orpolicy

Increase demand or support from healthservices

Refute myths and misconceptions

It is also important to remember that people with dementia have their own communication

needs and I was mindful to take this into account when developing the posters and the

postcards, keeping the message simple but effective and challenging the concept that


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dementia is just part of old age and that nothing can be done. The following table sets out

principals of good communication.

Table 10: Communicating with people with dementia

Communicating with people with dementia

People with dementia my only be able to focus on one thought at a time, multiple step

instructions may lead to confusion.

Avoid distractions

Avoid unwanted stimulation

Try to get across one idea at a time

Keep sentences short and simple

Information is not easily taken in. It helps to repeat the important part of the message.


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Chapter 7 Poster development

Shah and Simon (2007) suggest that local public education campaigns should be used to

promote:

the importance of early recognition

the recognition of signs and symptoms

the importance of seeking help early to improve outcomes

the availability of effective treatments and awareness of services.

The poster was developed through discussion with a local poster designer and printer who

had done previous work for the NHS, including work for a local general practice. He was a

useful resource in terms of design including accessing artwork, fonts and deciding on the size

of the poster and what would work best. I had originally wanted to produce a large A1 size

poster however; the designer identified that for most GP practices this would be too large as

they had little room for large displays. Likewise members from the Tamil community asked for

posters to be portable so that they could be handed out to members of the community as they

had no permanent base in which to display them.

In developing the poster I had wanted to address all the themes raised by the participants

from the community groups and my initial thoughts were to have a number of themes on

each poster. However in communicating with people with dementia it is important to address

one idea at a time (Alzheimers Society 2012). It was important therefore to keep the

message simple and use just one of the themes from the findings of the project. So in

deciding to focus on just one issue on the poster I looked for a central theme that recurred

across all of the groups.

Recurrent themes from both the literature and the participants agreed that there was a lack

of knowledge of dementia alongside a lack of knowledge of available services. Wanting to

make information available to people with dementia, as well as their family and carers, I

needed to avoid over stimulation and any distractions from the main message. I therefore

made the decision to keep the posters simple, encouraging people to ask for help if they are

worried about their memory, suggesting they talk to their GP and providing the telephone

number for access to the service.

Responses to the poster have been positive and although I anticipated making changes to

the design none have been requested. Showing the finished posters to the community

groups has created more discussion with people wanting to know more. Interestingly, some

participants still responded when seeing the poster but surely its just part of old age. One

participant who had two friends with dementia felt that it was so important that people get


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help that she has volunteered to visit local places in the community and ask for the posters to

be displayed.

For copies of posters please see appendix 1.


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Chapter 8 Conclusion

This project aimed to raise awareness of dementia and of Milton Keynes Community

Dementia Services with BME community groups in Milton Keynes.

Discussions were held with participants from the Tamil, Bangladeshi, Pakistani and Irish

communities. Knowledge gained from these discussions was used to design culturally

relevant and accessible posters and post cards advertising dementia services. Although

many cultures do not have a word for dementia, paradoxically it was the use of the word that

encouraged community groups to welcome the project and become involved when they had

been reluctant to engage in discussions about mental health on previous occasions.

During the process several themes emerged that added to my knowledge and understanding

of the barriers faced by people from BME communities when they are trying to access care

services, as well as their awareness of dementia.

Discussion on the signs and symptoms took place with the community groups at the same

time and participants from the Irish community requested a more formal talk on dementia

which was facilitated.

The Talking Mats were an essential aspect of the project. They aided communication with a

client who had early to moderate dementia and enabled her views to be heard. It had been

more difficult to use them with the woman whose dementia was more advanced but it was

not part of the remit of this project to establish the reasons for this. Whether this was just due

to her dementia or if it was due to the fact that English was not her first language, and

working with her relied on the use of an interpreter who had little training on communicating

with someone with dementia, is not known and further work on the subject would be

beneficial if all people with dementia are to have their voices heard. Without this further work

they would be most useful as a tool by the service when used with people in the early to

moderate stages of dementia who are able to understand the concept, and with interpreters

who have had training in working with people with dementia.

The outcome of the project was an awareness that if people from BME groups are to benefit

from early diagnosis then they need to understand and recognise the illness and know what

services are available and how to access them.

Further work identified from the project includes:

Ethnicity data needs to be collected in a more robust way so that it is possible

to measure the effectiveness of the posters and postcards.


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Further work is required with the communities identified in the project to

reinforce their knowledge of dementia and awareness of services.

As the dementia services in Milton Keynes are currently being changed, some

consideration on how best to continue this work is essential.

Increased awareness leads to increased access, therefore staff and interpreters

require training in how to work effectively together on how to get the most out of

these interactions.

Interpreters also require training on to equip them with the skills required to

communicate with people with dementia.

Feedback should be sought from people with dementia from BME communities

who access services. It would be very useful to know about their experiences

and how they feel improvements could be made.

Further work using the Talking Mat system could be undertaken to explore how

it can facilitate the assessment, planning and reviewing of care as well as its

use in supporting clients with early to moderate dementia to take part in service

improvement and review.

This project could be the catalyst for improved access to diagnosis and treatment for people

from BME communities. Services will need to be culturally relevant and effective so that

people will feel that referral is beneficial. Only then will they share their experiences with

other members of their communities.

If you can get one family to come along you will soon get others as the word will soon

spread (Member of the Bangladeshi Community).


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