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: support@rubymedplus.com / shoebilyas@gmail.com

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.

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