economic analyses of formal and informal dementia care and measurement of quality of life of...
TRANSCRIPT
Economic analyses of formal and Informal dementia care and measurement of quality of life of dementia patients and care givers.
Author: Dr. Shoeb Ahmed Ilyas BDS, MPH, EMSRHS, M.Phil. (HHSM), MHRM, MS (PSY), MS (BIOTECH),
PGDMLE, F.H.T.A.
Health Care Quality Management Consultant
Health Technology Assessment Consultant
Ruby Med Plus, Telangana State, India.
E-mail: [email protected] / [email protected]
Introduction Dementia affects the whole person not just the brain and memory, but also a host of important aspects
of daily life . The risk of developing dementia increases exponentially with age and global ageing means
that in the next few decades very large numbers of people around the world will enter the age where
the incidence of dementia will be highest. One of the biggest challenges of the 21st century seems to be
Alzheimer disease (AD) together with other types of dementia.
The ageing of the population across Europe and beyond means that the number of people with
dementia will grow in future decades with consequent implications for care provision, care burden and
public expenditure. It is no wonder, therefore, that many countries are already preparing for the
projected rise in the number of people with dementia by putting in place dedicated action plans and/or
dementia strategies.
Prevalence of dementia in Europe Prevalence of dementia increases almost exponentially with age, almost doubling every five years from
the age of 65 years onwards. Consistent information on the numbers of people with dementia in long-
stay settings, including data on the severity of their condition is mostly absent in many countries.
Dementia, however, continues to lag behind other chronic diseases in terms of budget allocation in
most countries, and in the share of resources devoted to research on the topic, particularly relative to
disease burden. Given that the economic and social costs of dementia are significant, new investment
will be needed to transform the lives of people affected by the disease.
“In the European Union alone, the total number of people with dementia to be 7.3 million, This poses
important challenges for all European health care systems, since the oldest old is one of the fastest
growing sectors of in European societies.” Dementia disorders are chronic, progressive, long lasting and,
so far, incurable. Despite the direct effects on the patients and their next of kin, the combination of an
expensive care, a great and increasing number of affected people and a heavy impact of informal care is
a great challenge for any society.
Countries across Europe whose populations are significantly older than Ireland’s such as Germany,
France, the UK, the Netherlands, Switzerland, Italy and the Scandinavian countries have obviously much
larger proportions of people now living with dementia. EuroCoDe has undertaken a meta-analysis based
on 26 European studies and age/gender-specific prevalence rates have been calculated (Reynish et. al.,
2009). This analysis showed the existing prevalence rates of dementia for men in all age groups and for
women in age groups up to the age of 85 years. However, the review found that for women over 85
years, prevalence estimates were higher than was previously reported. Reynish et al. (2009: 3)
concluded that ‘epidemiological studies of dementia prevalence in Europe continue to show constant
rates in all age ranges with the female oldest old being the exception‟. Based on EuroCoDe project
methodology, the European Commission has since 2009 been fully committed to producing reliable
prevalence and incidence data on dementia according to age, and under the Health Programme has
committed to develop actions for improving dementia prevalence data at a European level.
Global estimates of dementia prevalence Based on United Nations (UN) population projections, they estimated that worldwide dementia
prevalence rates would double every 20 years to 42 million by 2020 and 81 million by 2040. Their
estimates were calculated in five year bands from 60 to 85 and for those aged 85 years and over. They
also provided standardised prevalence rates for those aged 60 and over for each region (Ferri et al,
2005). In 2004, Alzheimer‟s disease International (ADI) convened an international group of experts and
using the Delphi consensus method, generated evidence-based age-specific global dementia prevalence
rates. The group calculated that, for the year 2001, there were 24.2 million people aged 60 years and
over with dementia worldwide (Ferri et al., 2005).
In 2009, a study estimated that worldwide and at the time of writing, 35.6 million people over 60 years
would be living with dementia in 2010 and that worldwide these numbers would double every 20 years
to 65.7 million by 2030 and to 115.4 million by 2050. These revised estimates are approximately 10%
higher than those reported earlier (Ferri et al., 2005). Prince‟s estimates (2009) were less conservative
and estimated that for 2010 there were approximately 7 million Western Europeans with dementia and
forecast that these numbers would increase to 10 million in 2030 and to 13.4 million in 2050. Ferri et al.
(2005) estimated that 4.9 million people were living with dementia in Western Europe and forecast that
this figure would rise to 9.9 million by 2040.
Dementia poses an enormous health and economic burden on society. This burden will increase
dramatically during the next 20 years due to the changing structure of society (Logsdon, Gibbons,
McCurry, & Teri, 2002). Forecasts suggest that there will be 42 million people with dementia worldwide
by 2020. (Comas-Herrera et al. 2010). Alzheimer‟s Disease International estimated that there were 30
million people with dementia worldwide in 2008, with 4.6 million new cases every year (Alzheimer's
Disease International & Prince, 2008). The organisation further predicted that “the number of people
affected will be over 100 million by 2050” (p. 1).
The number of people with dementia in the Asia Pacific region will increase from 13.7 million persons in
2005 to 64.6 million by 2050 (Access Economics, 2006). The percentage of people aged 60 years and
older in the Asia Pacific region will grow from under 10% in 2006 to 25% of the total population by 2050
(Access Economics, 2006), their disaggregated contributions to service demand are important to
elucidate. Furthermore, depression taken individually ranks as the highest burden of disease in middle
to high income countries, with an estimated 3.5 million depression cases of aged 60 and over.
Depression is a common additional complication of many chronic diseases and will increase the burden
of disease. Dementia and depression coexist in up to 40% of all dementias (Lyketsos et al. 2002) and
increases service use. Individuals with dementia are three times more likely to have become clinically
depressed than general population. Individuals with both dementia and depression will be at risk of
inaccurate diagnosis of dementia and indicating the importance of specialised services and family care.
Age, education level (a proxy for socio economic status), physical disability and cognitive mpairments
consistently predict dementia. Individuals with dementia and a co-morbid depression are likely to be
physically aggressive, have more frequent serious wandering (Lyketsos et al. 1990) and 4 % report „wish
to die‟ (Hoogendijk et al. 1999). Barriers to accessing appropriate services are therefore a substantial
risk factor which may place a substantial burden on informal care and therefore require a policy focus.
Economic Impact of Dementia:
The recent World Alzheimer Report estimated the worldwide cost of dementia to be in the region of
US$604 billion (Wimo and Prince, 2010), 42% of these costs were attributable to informal or unpaid care
provided by family and friends in the community, while a further 42% were due to care provided in
residential settings; only 16% of total costs were attributable to dementia-related direct health care
costs. Wimo et al. (2011), examining the economic impact of dementia in Europe, found that the total
cost of dementia disorders were in the region of €160 billion, 56% of which was attributable to the costs
of informal care. The average cost per person with dementia was estimated at approximately €22,000
per year, though significant variations were observed across countries.
The overall cost of illness in EU-27 for 7.2 million people with Alzheimer‟s disease and other forms of
dementia was by Eurocode estimated at EUR 160.3 billion (i.e. EUR 71.7 billion for direct costs and EUR
88.6 billion for informal care). For the whole of Europe with 10 million demented, the total cost was EUR
177.2 billion. According to a demographic forecast and with the assumption that there will be no
treatment breakthrough, the costs, will increase in the whole of Europe by 43% between 2008 and 2030
to over EU 250 billion. Today, the available drug treatment is symptomatic with modest effects. In
2005, more than three quarters (77%) of the total costs occurred in the more developed regions which
account for less than half (46%) of the worldwide dementia prevalence. The total worldwide societal
cost of dementia, on the basis of a dementia population of 29.3 million persons, was estimated to be US
$315.4 billion in 2005, including US $105 billion for informal care (33%)” (Wimo, et al., 2007). Many
psychosocial and pharmacological/diagnostic interventions have been shown to be cost-effective
(Brodaty, et al., 2003).
The most effective way to generate savings would be if the onset of dementia could be delayed or
incidence reduced through prevention. Studies have indicated that relatively small delays in the onset
and progression of dementia could substantially reduce disease-related costs (Brook Meyer, et al.,
1998). In addition to the benefits of medical interventions, some studies also have shown cost-
effectiveness of interventions for caregiver education, training and support. With expenditure for
dementia predicted to increase by 394% in next 30 years. (Comas-Herrera et al. 2010). Aggregated
figures for dementia have suggested that dementia consumes an amount comparable to 1% of global
gross domestic product (Andres and Prince 2010).
Psychosocial approaches including support, counseling, education and memory loss programs through
all stages of dementia progression can be very helpful for the individual and the family. Psycho-
education can help the person and their family learns to manage certain symptoms such as cognitive
behavior therapy and can help prevent secondary morbidity such as depression or anxiety in the person
with dementia and/or their family members. The clinical burden of dementia results in an economic
burden for society as well as for individuals affected by dementia and their families.
Most people with dementia receive care at home, generally provided by a female caregiver, usually a
spouse or daughter. (Access Economics, 2006). Caregivers are crucial for maintaining people affected
with dementia in the community. Without a caregiver, or when a caregiver is stressed, the likelihood of
nursing home admission rises sharply (Brodaty, McGilchrist, Harris, & al., 1993). Caregiver interventions
can reduce caregiver psychological morbidity and help demented people stay at home longer (Brodaty,
et al., 2003). Other studies showed that caregiver counselling and support reduced the rate of nursing
home placements of AD patients and also improved caregivers‟ satisfaction with social support,
response to patients‟ behaviour problems, and symptoms of depression (Mittelman, Roth, Coon, &
Haley, 2004).Caregivers can experience adverse psychological, physical, social, and financial
consequences (Brodaty, Green, &Koschera, 2003).
Quality of life in dementia with co-morbid depression Dementia is not possible to be cured. So the highest focus of dementia care is to promote well -being
and maintain an optimal quality of life (Ettema, Droes, de Lange, Mellenbergh, &Ribbe, 2005a). Given
the prevalence and burden of dementia and its impact on the allocation of resources for treatment and
care, there is strong justification for assessing quality of life (QoL) in these persons and their caregivers
in order to monitor changes to maintain or enhance the people with dementia‟s (PWD‟s) and the
caregiver‟s QoL.
Logsdon, Gibbons, McCurry and Teri (2002) concluded: Reasons for measuring QOL in people with
cognitive impairment are compelling. QOL assessments provide a format for individuals and their
caregivers to express whether an intervention made an important difference in the patient‟s life. Such
assessments allow researchers to draw conclusions about the extent to which treatments provide
intended and “clinically significant” benefits. Furthermore, monitoring changes in QOL in individuals
with progressive cognitive impairment may suggest new areas of intervention to maintain or enhance
life quality. (p. 511).
Depending on people with dementia’s level of cognitive impairment, it can be argued that people with
dementia’s QoL is best assessed by obtaining both PWDs‟ self-ratings as well as caregivers‟ proxy-
ratings. It can be further argued that, from an ethical point of view, PWDs‟ perspectives should always
be considered, regardless of their impairments. It has been argued that “proxy-ratings can be
considered as complementary information for self-ratings but not as a substitute” (Riepe, et al., 2009).
Measuring Quality of life in dementia with co-morbid depression and their care takers: Quality of life is
the perception of people 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; irrespective of health
status (WHOQOL, 1995). Quality of life has a multifaceted perspective. Quality of life is a dynamic
construct with interactive domains and changing values resulting from processes such as aging, life
experiences and diseases.
HRQoL can be defined as the value assigned to length of life as modified by the impairments, functional
states, perceptions, and social opportunities that are influenced by disease, injury, treatment, or policy.
(Gonzalez-Salvador MT et al. 1999). Dementia places a substantial medical, social and psychological
burden on patients and their families and caregivers. The detrimental impact upon quality of life of all
persons involved is well established. Most people regard dementia as a devastating end of life. The
available evidence suggests that, whereas patients misreports their well-being, healthy people also
mispredict the emotional impact that chronic illness and disability will have on their lives. (Scholzel-
Dorenbos CJM, 2000).
Quality of life measurement can demonstrate whether benefits of treatments are perceived as
meaningful by patients and caregivers. (Nowels D, et al. 2005). The International Working Group for the
Harmonization of Dementia Guidelines has recommended that quality of life should be included as
outcome parameter in dementia trials. (Ankri J, et al. 2003). Better understanding of the key
determinants of quality of life of dementia patients and informal caregivers can help to improve
dementia care. QoL measures attempt to evaluate directly the impact of dementia or interventions on
people‟s ability to function in life. QoL measurement provides a subjective evaluation that captures
benefits and harms of interventions not detected by standard clinical outcomes.
Three methods of QoL assessment are available: self-report, proxy-report and rating by direct
observation of behaviour assumed to be related to QoL. QoL measurement provides a subjective
evaluation that captures benefits and harms of interventions not detected by standard clinical
outcomes. Three methods of QoL assessment are available: self-report, proxy-report and rating by
direct observation of behaviour assumed to be related to QoL.
In 2008, a European agreement emerged, recommending the use of patient and caregiver QoL as
outcome measures for psychosocial intervention research in dementia care (Moniz-Cook, et al., 2008a).
It has been stressed for studies to treat PWDs and their caregivers as a unit and consequently to
measure the QoL of both parties. (Scholzel-Dorenbos, et al., 2007) and had been concluded that disease-
specific instruments are to be preferred, certainly when the study focuses primarily on people with
dementia (Ettema, et al., 2005a). The distinct features of dementia, such as neuropsychiatric and
behavioural symptoms, trigger distinct reactions, symptoms and coping mechanisms in caregivers of
patients with dementia with co morbid depression (Covinsky, et al., 2003) and therefore increases risk
of physical health problems (Kurz, et al., 2003) which are a major reason for admission of patients with
dementia into residential care (Cummings, et al., 1994).
Systematic literature review The World Health Organization (WHO) (2007) defines dementia as: a syndrome due to disease of the
brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical
functions, including memory, thinking, orientation, comprehension, calculation, learning capacity,
language, and judgement. Consciousness is not clouded. The impairments of cognitive function are
commonly accompanied, and occasionally preceded, by deterioration in emotional control, social
behaviour, or motivation. This syndrome occurs in Alzheimer's disease, in cerebro vascular disease, and
in other conditions primarily or secondarily affecting the brain.
There is a perceived need for QoL studies to evaluate an economic perspective in the analysis. The aim
of the review will be to answer the following question: What is the economic cost of QoL in patients
with dementia and with comorbidity of depression and their family-care givers. Systematic review will
help to obtain a comprehensive understanding of economic perspective from point of clinical, non-
clinical and identify probable gaps of knowledge regarding patients with dementia with comorbid
depression and their family caregivers‟ QoL in relation to the following domains:
1. Pharmacological treatments;
2. Informal support provided by family-caregivers (direct, non-medical costs);
3. Economics, especially indirect costs such as mortality costs.
The perceived level of social support from family and friends is usually hypothesized to be a predictor of
family caregivers‟ and patients with dementia with co morbid depression QoL.
Clinical measures of patient quality of life Clinical measures of patient QoL at baseline study and may also in follow-up interview include: stage of
dementia, cognitive impairment, QoL per se, depression.
Quality of life: Quality of Life-Alzheimer’s Disease Scale (QOL-AD, proxy) The QOL-AD was developed by Logsdon, Gibbons, et al. (1999; 2002) and will be used in the study. The
QOL-AD uses both patient and caregiver reports to assess QoL. This is a 13-item patient and caregiver
measure of quality of life, which covers the following domains: physical health, energy, mood, living
situation, memory, family, marriage, friends, tasks, fun, money, self and life as a whole. Thirteen items
are rated on a 4-point Likert scale, with 1 being poor and 4 being excellent, with a total score of
between 13 and 52.
The scale was developed based on a literature review on the assessment of QoL in other chronically ill
populations. The scale has shown excellent internal consistency with a Cronbach‟s alpha coefficient of
0.82 (Thorgrimsen, Selwood, et al., 2003) and of 0.84 (Logsdon, et al., 2002) for patient reports and with
a Cronbach‟s alpha coefficient of 0.86 for caregiver ratings (Logsdon, et al., 2002). Validity of patient and
caregiver reports across cognitive levels was supported by Pearson‟s correlation with measures of
depression (r = -.41 to -.65), day-to-day functioning (r = -.10 to -.45), and pleasant events frequency (r =
.18 to .51). Intra-class correlation between patient and caregiver reports was positive across all cognitive
levels (r = .14 to .39) (Logsdon, et al., 2002).
Cornell Scale for depression in Dementia (CSDD) To measure depression in patients with dementia Cornell scale will be used. Cornell Scale for depression
in Dementia (CSDD) is a 19-item instrument specifically designed for the rating of symptoms of
depression in demented patients. Items were constructed so they can be rated primarily based on
observation. The severity of each item will be rated according to three explicitly defined grades: absent,
mild or intermittent, and severe. The scale will be administered in two steps. First the clinician
interviews the patient‟s caregiver on each of the 19 items, and then briefly interviews the patient. The
caregiver is instructed to base his report on observations of the patient‟s behaviour during the week
prior to the interview. After interviewing the patient, if there are any large discrepancies between the
clinician‟s observations and the caregiver‟s report, then the clinician will again interview the carer to
clarify the reason for disagreement. The CSDD is scored based on the clinician‟s final judgement. The
item scores are summed: < 6: absence of significant depressive symptoms; > 10: probable major
depression; > 18: definite major depression. Total time for the administration is approximately 30
minutes: 20 minutes with the caregiver and 10 minutes with the patient. The scale has shown high
interrater reliability (Cohen's kappa of 0.67), internal consistency (Cronbach‟s alpha coefficient of 0.84)
and sensitivity (Alexopoulos, et al., 1988). It requires the participation of a caregiver who has a
thorough knowledge of the patient‟s status over the previous week. It is more likely to yield meaningful
results than measures which rely only on patient responses to questions due to the inability of
cognitively deficient patients to respond adequately to other surveys.
Clinical measures of caregiver quality of life Clinical measures of caregiver QoL will be assessed with following items QoL per se, burden, depression,
and health, the subjective level of support from family and friends and the perceived economic burden.
Quality of life: Quality of Life-Alzheimer’s Disease Scale (QOL-AD) In this study the caregivers‟ QoL will be assessed with the same instrument (QOL-AD) as the patients‟
QoL. The QOL-AD has been used to successfully measure the caregivers‟ QoL (Shin, et al., 2005).
Subjective burden: Zarit Burden Interview (BI) BI, developed by Zarit, Reever and Bach-Peterson (1980) is the most commonly used scale to measure
caregiver burden in dementia (Ankri, Andrieu, Beaufils, Grand, &Henrard, 2005).
The BI has been designed to assess the stresses experienced by family-caregivers of elderly and disabled
persons. It can be completed by caregivers themselves or as part of an interview. Caregivers are asked
to respond to a series of 22 questions about the impact of the patient‟s disabilities on their life. The
items are derived from clinical and research experience with dementia caregivers. The scale has content
validity and takes into account common areas of concern such as health, finances, social life and
interpersonal relations. For each item, caregivers are asked to indicate how often they have felt that
way: never, rarely, sometimes, quite frequently, or nearly always. The BI is scored by summing the
responses of the individual items. Higher scores indicate greater caregiver distress: 0 – 21 (no – little
burden); 21 – 40 (mild – moderate burden); 41 – 60 (moderate – severe burden); 61 – 88 (severe
burden). The scale has high internal consistency with a Cronbach‟s alpha coefficient of 0.91 and good
test-retest reliability with Cohen's kappa of 0.71 (Gallagher, Rappaport, Benedict, Lovett, &Silven,
1985).
Depression: Geriatric Depression Scale (GDS) Family-caregivers of dementia patients are at high risk for psychological distress, with rates of clinical
depression and depressive symptoms far exceeding those for age matched comparison groups (Schulz,
O Brien, Bookwala, &Fleissner, 1995). The GDS is a brief, 30-item questionnaire in which participants will
be asked to respond by answering yes or no in reference to how they felt over the past week. The
number of questions answered positive is added up. A depression may be present if a participant
responded more than 10 times with 16 „yes‟. The scale was originally developed for use with older
persons (Yesavage, et al., 1982) but has since been widely used in a broad population including younger
and older family-caregivers of persons with dementia (Mittelman, Roth, Coon, et al., 2004). The
sensitivity and specificity, and the convergent and criterion validity of the GDS are reported to be
excellent (Korner, et al., 2006)
Social support: Multidimensional Scale of Perceived Social Support (MSPSS) Level of social support and
perceived isolation can be measured with the MSPSS (Zimet, Dahlem, Zimet, & Farley, 1988). It is a 12-
item measure comprising three aspects of perceived social support - that derived from family
members, from friends, and from significant others. Items are measured on a 7-point-Likert-scale from 1
(strongly disagree) to 7 (strongly agree). A higher score indicates increased levels of perceived social
support. The score on individual items on the MSPSS are summed to calculate a total score (maximum of
84 points). Scores on the four items that comprise each of the three subscales are also summed to
calculate three single scores for family members, friends, and significant others (maximum 28 points
each). Canty-Mitchell and Zimet (2000) assessed the reliability and validity of the MSPSS instrument. The
Cronbach‟s alpha coefficient for the entire MSPSS was 0.93; the Cronbach‟s alpha coefficient of the
three subscales of family, friends and significant other were 0.91, 0.89 and 0.91 respectively. Correlation
coefficients were used to assess the validity of the MSPSS instrument by comparing it to the Adolescent
Family Caring Scale (AFCS). The results showed that for the family subscale the correlation was r = .76 (p
<.001), for the friends‟ subscale it was r = .33 (p <.001), and for the significant other subscale was r =.48
(p <.001) (Canty-Mitchell &Zimet, 2000).
Economic analysis The second research aim is to measure and describe the direct and indirect costs which are related to
steps that patient with dementia with co morbid depression and their family caregivers take within the
given health system during the disease and which have to be covered by the persons concerned. An
economic evaluation is defined as “the comparative analysis of alternative courses of action in terms of
both their costs and consequences” (M. F. Drummond, et al., 2005). Cost of illness studies offer a useful
way to document the origins and extent of care costs in relation to particular diseases. They require the
identification, measurement and valuation of all resources related to a particular disease. The output,
expressed in monetary terms, is an estimate of the total cost of a particular illness to society (Rice,
1994). While cost of illness studies are very valuable in determining not only the cost 17 of an illness but
also the distribution of costs across budgets and sectors of the community.
Nonetheless, cost of illness studies is useful in determining not only resource use, but also the
distribution of costs among different resource categories. Cost of illness studies is a useful way to
document the origins and extent of resource use in relation to particular diseases. They require the
identification, measurement and valuation of all resources related to a particular disease. The output,
expressed in monetary terms, is an estimate of the total cost of a particular disease to society (Rice,
1994).
A health services perspective, for example, would only include those costs falling directly on health
services budgets, for example, pay costs in hospital-based care settings. A societal perspective is broader
and includes, as far as possible, all costs, regardless of where they fall.
In addition to health service costs, such an approach would include the opportunity cost associated with
unpaid care to people with dementia by family caregivers and productivity losses associated with
premature death (Luengo-Fernandez et al., 2010). Cost of illness studies can adopt either a top-down
approach (using national data) or a bottom-up approach (using local or survey data extrapolated to the
national level).
In representation of this definition, the second research objectives will be to identify, measure, value,
and compare the outcomes and costs of interventions available from primary and secondary care for
patient with dementia with co morbid depression and their families. (Note the economic evaluation will
be done with the advice and recommendations of thesis supervisors and based on given health care
settings i.e. may be top down / bottom-up or both approaches). The approach for measuring QoL for
family care givers will be designed based on supervisor advice and given settings.
Cost definitions Two main methods are distinguished for estimating direct health system costs:Top-down “disease
cost data can be derived from central data collection agencies, where these agencies exist” and Bottom-
up “cost estimates use surveys, other cross-sectional or data gathering tools to accumulate information
from either a single study or multiple sources” (Access Economics, 2008). The advantage of the top-
down methodology is that cost estimates for various diseases will be consistent, enhancing comparisons
and ensuring that the sum of the parts (health system costs of each disease) does not exceed the whole.
The World Health Organization (1999) has published the following definitions for different costs:
Costs: “value of the resources used in an activity, also the benefits sacrificed through a particular event
of choice of action rather than another”; Direct costs: “all the goods, services and other resources that
are consumed in the provision of a particular service or area (such as hospital supplies), including
medical costs (such as payments to providers, material) and non-medical costs (such as transportation
to hospital)”;
Indirect costs: “total sum of morbidity costs (goods and services not produced by the patient because
of the illness), mortality costs (goods and services the person could have produced had the illness not
been incurred and the person not died prematurely), and productivity cost (related to lost productivity
incurred by an employee who leaves work to provide care for the patient)”; The above terms are widely
used in publications which deal with economic aspects of dementia.
Assessment of direct and indirect costs In this study, direct medical costs for patients with dementia with co morbid depression and family-
caregivers will include:
i. Medication (dementia and other mental health drugs)
ii. Consultation with health professional (GP, psychiatrist/ geriatrist, nurse, other specialist)
iii. Paid care provided by a professional caregiver (visiting nurse, help with personal care)
iv. Counseling (social worker, Alzheimer Society, psychologist, other) Direct non-medical costs for
patients with dementia with co morbid depression and family care givers will include:
i. Time spent on informal care (unpaid care provided by a family-caregiver)
ii. Domestic assistance
iii. Day care, sitter service
iv. Support group meetings, Alzheimer society seminars
Indirect costs will include:
i. Productivity costs (lost productivity of a family-caregiver due to the care of relative or friend with
dementia and associated depression).
ii. At follow-up: Work status caregiver (part of the Resource Utilization in Dementia Instrument – RUD)
which determines change in employment status, for example, cut-back in overall working hours in order
to accommodate the patient’s increased need for care.
Note: The mortality and morbidity costs will not be measured because this study will be focused on
illness-related costs. Costs in this study will be estimated using the gross costing method in which the
utilization of important types of care are summed and then multiplied by a unit cost for each type of
care.
Gross costing method using an adaptation of CAS, CATS and RUD The methods used to obtain the cost
data: a questionnaire. First of all, the care services provided by paid professionals will be measured
using the Caregiver Activities Time Survey – CATS (Clipp & Moore, 1995) and the Caregiver Activity
Survey – CAS (Davis, et al., 1997). Both surveys have shown good test-retest reliability, a list of services –
derived from the CATS (i.e. visiting nurse, support worker for personal and domestic assistance, day care
service, and others) will be given to the caregivers. They will be asked to report for each service (1) the
number of times the service was received in the last two weeks and (2) the average time spent per visit.
The second part of the questionnaire will be derived from the CAS and measures the unpaid care
provided by the family-caregiver. The informant will be asked to estimate the time spent in a typical day
for five categories of care (supervision, transportation, dressing, eating, and looking after the Patient
appearance). The informant only includes activities that were new since the onset of dementia. The time
spent in each of the categories and services will be summed and then annualised. A replacement wage
method will be used to estimate the economic value of unpaid care giving. In this approach, the unit
cost of unpaid care giving time will be the hourly wage of a worker who would need to be hired to
provide the same care that an unpaid family-caregiver is providing (Murman, et al., 2002). In Economics,
it is more common to use the concept of opportunity costs. That is, how much the caregiver would be
earning if he/she worked for pay instead of taking care of the dementia patient. This method gives
different results for caregivers with different „opportunity costs‟ (that is, foregone wage).
Additionally, the number of outpatient health professional consultations will be quantified; the type of
health profession and the length of the visit will be specified. The use of prescribed medication will be
determined including the type of medication, and the retail price. The number of days of hospital care
and emergency department visits each with an overnight stay will be quantified and the reason for
admission will be specified. All four items (consultation, medication, hospitalisation, and productivity
costs) will be adapted from a third assessment tool, aside from the CATS and CAS, the Resource
Utilization in Dementia Instrument (RUD) (Wimo& Nordberg, 2007). The expenses will be covered by
adding four additional questions to the original CATS and CAS.
The RUD will be a structured interview capturing caregiver time, caregiver and patient direct medical
resource utilization and patient direct nonmedical resource utilisation. Caregiver productivity losses will
also be assessed.
Perceived economic burden: Cost of Care Index - (CCI) The CCI was developed by Kosberg and Cairl (1986) as a case management tool to identify problems of
family-caregivers who take care of an elderly relative. This 20-item instrument provides measures of
subjective burden in five domains one of which is related to economic costs. This domain consists of
four statements including, for example, “I feel that my family and I must give up necessities because of
the expense to care for my elderly relative.”, and caregivers can either “strongly agree”, “agree”,
“disagree” or “strongly disagree” generating between 1 and 4 points with an overall score between 4
and 16. Higher scores indicate higher levels of economic burden. The CCI has been shown to be valid and
reliable (Kosberg, Cairl, & Keller, 1990). With the recommendation of thesis supervisor the part -5 of CCI
questionnaire can be included in the economic analysis.
Gross costing analysis of costs Costs in this study will be estimated using the gross costing method in which the utilisation of important
types of care will be summed and then multiplied by a unit cost for each type of care. This method is
helpful in identifying direct and indirect dementia related costs, measuring the out-of-pocket-expenses
and productivity costs for the duration of 1 year. It is also possible to split the data into 3-month
intervals resulting in a quarterly mode.
The care giving hours have a significant negative impact on caregivers' physical and psychological health
which also negatively impacts patients' QoL. The hypothesis that direct non-medical costs increase with
increasing dementia severity, increasing depression symptoms as well as increasing functional
limitations will also be discussed in relation to informal care hours. Using the replacement wage
method, unpaid care provided by the family-caregivers will be calculated for baseline and follow-up
data. In this approach, the unit cost of unpaid care giving time can be hourly wage of a worker who
would need to be hired to provide the same care that an unpaid family-caregiver is providing (Murman,
et al., 2002).
In Health Economics, we use the concept of opportunity costs. That is, how much the caregiver would be
earning if he/she worked for pay instead of taking care of the dementia patient. The carer market rate
of employment per hour will be adopted from the appropriate authorities. The informant will be asked
to estimate the time spent in a typical day for different categories of care that were new since the onset
of dementia. The time spent in each of the categories and services will be summed and then annualized.
The following table summarizes how much time will be spent on average on each care category per
dementia patient per day.
References 1. Access Economics (2006). Dementia in the Asia Pacific region: The epidemic is here. Canberra: Asia
Pacific members of Alzheimer's Disease International.
2. Alexopoulos, G. S., Abrams, R. C., Young, R. C., & Shamoian, C. A. (1988). Cornell Scale for Depression
in Dementia. Biol Psychiatry, 23(3), 271-284.
3. Alzheimer's Disease International, & Prince, M. (2008). The prevalence of dementia worldwide.
http://www.alz.co.uk/adi/pdf/prevalence.pdf
4. Andres, W. And Prince (2010) World Alzheimer Report 2010: The Global Economic Impact of
Dementia.
5. Ankri J, Beaufils B, Novella JL et al. Use of the EQ-5D among patients suffering from dementia. J
ClinEpidemiol 2003; 56:1055-63.)
6. Ankri, J., Andrieu, S., Beaufils, B., Grand, A., & Henrard, J. C. (2005). Beyond the global score of the
Zarit Burden Interview: useful dimensions for clinicians. Int J Geriatr Psychiatry, 20(3), 254-260.
7. Brodaty, H., Green, A., & Koschera, A. (2003). Meta-analysis of psychosocial interventions for
caregivers of people with dementia. J Am Geriatr Soc, 51(5), 657-664.
8. Brodaty, H., McGilchrist, C., Harris, L., & al., E. (1993). Time until institutionalization and death in
patients with dementia: Role of caregiver training and 22 risk factors. Arch Neurol, 50, 643-650.
9. Brookmeyer, R., Gray, S., & Kawas, C. (1998). Projections of Alzheimer's disease in the United States
and the public health impact of delaying disease onset. Am J Public Health, 88(9), 1337-1342.
10. Canty-Mitchell, J., & Zimet, G. D. (2000). Psychometric properties of the multidimensional scale of
perceived social support in urban adolescents. American Journal of Community Psychology, 28(3), 391.
11. Clipp, E. C., & Moore, M. J. (1995). Caregiver time use: an outcome measure in clinical trial research
on Alzheimers disease. Clinical Pharmacology & Therapeutics, 58(2), 228-236.
12. Comos-Herrera, A., Northey, S., Wittenberg, R., Knapp, M., Bhattacharaya, S. And Burns, a. (2010)
„Future costs of dementia-related long term care: exploring future scenarios‟, International
Psyuchogeriatrics/ IPA, 1-11.
13. Covinsky, K. E., Newcomer, R., Fox, P., Wood, J., Sands, L., Dane, K., et al. (2003). Patient and
caregiver characteristics associated with depression in caregivers of patients with dementia. Journal of
General Internal Medicine, 18, 1006-1014.
14. Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A., & Gornbein, J. (1994).
The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia.
Neurology, 44(12), 2308-2314.
15. Davis, K. L., Marin, D. B., Kane, R., Patrick, D., Peskind, E. R., Raskind, M. A., et al. (1997). The
Caregiver Activity Survey (CAS): development and validation of a new measure for caregivers of persons
with Alzheimer's disease. Int J Geriatr Psychiatry, 12(10), 978-988.
16. Drummond, M. F., Sculpher, M. J., O'Brien, B. J., Torrance, G. W., & Stoddart, G. L.(2005). Methods
for the Economic Evaluating of Health Care Programmes (third ed.). New York: Oxford University Press.
17. Ettema, T. P., Droes, R. M., de Lange, J., Mellenbergh, G. J., & Ribbe, M. W. (2005). A review of
quality of life instruments used in dementia. Qual Life Res, 14(3), 675-686.
18. EuroCoDe was funded in 2005 by the European Commission under the Community Public Health
Programme for neuro-degenerative disease.
19. Ferri, C.P., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M., Hall, K., Hasegawa, K.,
Hendrie, H., Huang, Y., Jorm, C., Mathers, C., Menezes, P.R., Rimmer, E., Scazufca, M. (2005) „Global
prevalence of dementia: a Delphi consensus study‟, The Lancet, 366(December): 2112-17.
20. Gallagher, D., Rappaport, M., Benedict, A., Lovett, S., & Silven, D. (1985). Reliability of selected
interview and self-report measures with family caregivers. Paper presented at the 38th annual Scientific
Meeting of the Gerontological Society of America, New Orleans.
21. Gonzalez-Salvador MT, Arango C, Lyketsos CG et al. The stress and psychological morbidity of the
Alzheimer patient caregiver.Int J Geriatr Psychiatry 1999;14:701-10.)
22. Hoogendijk W.J.G.,Sommer I.E.C., Pool C.W. Kamphorst W.Hofman, M.A., Eikelenboom, P.and
Swaab, D.F. (1999) “Lack of association between depression and loss of neurons in the locus coeruleus
in Alzheimer Disease, Arch Gen Psychiatry 56 (1), 45-51.
23. Korner, A., Lauritzen, L., Abelskov, K., Gulmann, N., Marie Brodersen, A., Wedervang-Jensen, T., et al.
(2006). The Geriatric Depression Scale and the Cornell Scale for Depression in Dementia. A validity study.
Nord J Psychiatry, 60(5), 360-64.
24. Kosberg, J. I., & Cairl, R. E. (1986). The Cost of Care Index: a case management tool for screening
informal care providers. Gerontologist, 26(3), 273-278.
25. Kosberg, J. I., Cairl, R. E., & Keller, D. M. (1990). Components of burden: interventive implications.
Gerontologist, 30(2), 236-242.
26. Kurz, X., Scuvee-Moreau, J., Vernooij-Dassen, M., & Dresse, A. (2003). Cognitive impairment,
dementia and quality of life in patients and caregivers. Acta Neurol Belg, 103(1), 24-34.
27. Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002). Assessing quality of life in older
adults with cognitive impairment. Psychosom Med, 64(3), 510-519.
28. Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002). Assessing quality of life in older
adults with cognitive impairment. Psychosom Med, 64(3), 510-519.
29. Luengo-Fernandez, R., Leal, J. and Gray, A. (2010) Dementia 2010: The Economic Burden of
Dementia and Associated Research Funding in the United Kingdom,Alzheimer‟s Research Trust, England.
24
30. Mittelman, M. S., Roth, D. L., Coon, D. W., & Haley, W. E. (2004). Sustained benefit of supportive
intervention for depressive symptoms in caregivers of patients with Alzheimer's disease. Am J
Psychiatry, 161(5), 850-856.
31. Moniz-Cook, E., Vernooij-Dassen, M., Woods, R., Verhey, F., Chattat, R., De Vugt, M., et al. (2008b).
A European consensus on outcome measures for psychosocial intervention research in dementia care.
Aging & Mental Health, 12(1), 14-29.
32. Murman, D. L., Chen, Q., Powell, M. C., Kuo, S. B., Bradley, C. J., & Colenda, C. C. (2002). The
incremental direct costs associated with behavioral symptoms in AD. Neurology, 59(11), 1721-1729.
33. Nowels D, McGloin J, Westfall JM et al. Validation of the EQ-5D quality of life instrument in patients
after myocardial infarction. Qual Life Res 2005;14:95-105 34. Prince, M. (2009) „The global prevalence of
dementia‟ in Prince, M. and Jackson, J. (eds.) World Alzheimer Report 2009, Alzheimer‟s Disease
International (ADI ), London, pp. 25-45.
35. Reynish, E., Bickel, H., Fratiglioni, L., Kiejna, A., Prince, M. and George, J. (2009) „Systematic review
and collaborative analysis of the prevalence of dementia in Europe‟ (poster presented at the
Alzheimer‟s Association International Conference on Alzheimer‟s Disease, Alzheimer‟s Association
International Conference on Alzheimer‟s Disease, Vienna, Austria, 11-16 July 2009), Alzheimer’s and
Dementia, 5(4) Supplement 1, p. 393.
36. Rice, D. (1994) „Cost-of-illness studies: fact or fiction?‟, Lancet, 344: 1519-20.
37. Riepe, M. W., Mittendorf, T., Forstl, H., Frolich, L., Haupt, M., Leidl, R., et al. (2009). Quality of life as
an outcome in Alzheimer's disease and other dementias obstacles and goals. BMC neurology, 9, 47.
38. Scholzel-Dorenbos CJM (2000). Measurement of quality of life in patients with dementia of
Alzheimer type and their caregivers: Schedule for the Evaluation of Individual Quality of Life
(SEIQoL).TijdschrGerontolGeriatr 31:23-6
39. Scholzel-Dorenbos, C. J., Ettema, T. P., Bos, J., Boelens-van der Knoop, E., Gerritsen, D. L.,
Hoogeveen, F., et al. (2007). Evaluating the outcome of interventions on quality of life in dementia:
selection of the appropriate scale. Int J Geriatr 25 Psychiatry, 22(6), 511-519.
40. Schulz, R., O Brien, A. T., Bookwala, J., & Fleissner, K. (1995). Psychiatric and physical morbidity
effects of dementia caregiving: prevalence, correlates, and causes. The Gerontologist, 35(6), 771.
41. Shin, I. S., Carter, M., Masterman, D., Fairbanks, L., & Cummings, J. L. (2005). Neuropsychiatric
symptoms and quality of life in Alzheimer disease. Am J Geriatr Psychiatry, 13(6), 469-474.
42. Thorgrimsen, L., Selwood, A., Spector, A., Royan, L., de Madariaga Lopez, M.,Woods, R. T., et al.
(2003). Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer's
Disease (QoL-AD) scale. Alzheimer Dis Assoc Disord, 17(4), 201-208.
43. Wimo, A. and Prince, M. (2010) World Alzheimer Report 2010: The Global Economic Impact of
Dementia, Alzheimer‟s Disease International.)
44. Wimo, A., & Nordberg, G. (2007). Validity and reliability of assessments of time: comparisons of
direct observations and estimates of time by the use of the resource utilization in dementia (RUD)-
instrument. Archives of Gerontology and Geriatrics, 44(1), 71-81.
45. Wimo, A., Jönsson, L., Gustavsson, A. et al (2011) „The economic impact of dementia in Europe in
2008-cost estimates from the EuroCoDe project‟, International Journal of Geriatric Psychiatry, 26: 825-
32.
46. Wimo, A., Winblad, B., & Jonsson, L. (2007). An estimate of the total worldwide societal costs of
dementia in 2005. Alzheimer's and Dementia, 3(2), 81-91.
47. World Health Organization (1999). European Observatory on Health Systems and Policies. Glossary
entry for Costs Retrieved 02.04.2007, from
http://www.euro.who.int/observatory/Glossary/TopPage?phrase=Cost
48. World Health Organization (2007). The ICD-10 classification of mental and behavioural disorders:
organic, including symptomatic, mental disorders. Retrieved from
http://apps.who.int/classifications/apps/icd/icd10online/
49. Yesavage, J., Brink, T. L., Rose, T. L., Lum, O., Huang, V., Adey, M., et al. (1982). Development and
validation of a geriatric depression screening scale: a preliminary report. J Psychiatr Res, 17(1), 37-49
50. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of
feelings of burden. Gerontologist, 20(6), 649-655. 26
51. Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1988). The Multidimensional Scale of
Perceived Social Support. . Journal of Personality Assessment, 52, 30-41.