The economic cost of Alzheimer's disease: Family or public health burden?
The estimated total healthcare costs for the treatment of Alzheimer disease in 2020 was estimated at US$305 billion, with the cost expected to increase to more than US$1 trillion as the population ages.
Before reviewing the cost of Alzheimer’s Disease (AD), cost terminology must first be defined. The costs of dementia to society are the result of all goods and services that are given up to prevent, diagnose, treat and otherwise cope with dementia. Individuals, families and carers are affected both economically and in terms of quality of life. Total costs are divided into direct costs (represented by hospital resources, medical services, drugs, social services, family payments to formal caregivers) and indirect costs (such as loss of income by the patient and loss or reduction for family members or careers). Finally, some literature defines intangible costs as those related to pain or deterioration of patient and caregivers’ quality of life. Only direct and indirect costs are estimated in most studies
The median survival of patients with AD is 9 years for persons diagnosed at age 65 years and 3 years for persons diagnosed at 90 years of age, and if patients do not die of other causes the disease is expected to progress to advanced stages. Global social costs of AD are dependent on severity of illness, on stage of disease and patient’s place of residence. In mild and moderate AD (early in the disease) the indirect costs are considerable and often exceed direct costs because most patients have an informal caregiver and are living in the community. Thus, the distribution of costs for community-dwelling patients is 40% for direct and 60% for indirect costs. This situation does not represent direct monetary expenditure but a heavy burden on caregivers. If this informal caregiver time is not available, caregiving must be provided by paid carers or supplied through patient institutionalization (two ways of converting indirect into direct costs).
Institutionalization in AD patients is proportional to severity: up to 62% of patients at a severe stage living at nursing home against 20% in moderate AD. When patients are institutionalized, costs shift from indirect to direct. Fifty to 75 percent of total cost of AD occurs during severe stages, principally generated from nursing homes expenses which represent the main expenditure in this illness. The impact of institutionalization cost is significant, while the impact of expenses of dementia on the family budget is sufficiently high to account for 66-75% of household income.
Because of the nature of AD, progressive impairment in cognitive, behavioural and functional status generates a significant burden on patient care. Informal caregiver time represents an important resource which increases with AD stage in community-dwelling patients. Studies show that informal caregiving time for community-dwelling patients with AD ranged from 11 to 70 hours per week. This time reduces for institutionalized patients. If this informal caregiver time were not available or becomes too burdensome, use of paid caregivers or institutionalization would be the consequence, with corresponding increases in direct costs.
About 80% of AD patients live at home and receive informal care while half of all non-institutionalized patients have more than one caregiver. Primary carers are predominantly women, either wife or daughter, and cultural differences can be important in this issue. General carers provide companionship, assist the patient in most non-instrumental or basic activities (eating, dressing, habitual cleanness generally, etc.) and instrumental activities (phone use, cooking, finance management, transport, drug provision, etc.) of daily living. These carer responsibilities increase as dementia progresses, at least until the point at which the person with dementia requires formal care (institutionalization or formal paid caregiver).
Due to the large amount of time spent on patient care, the impact on the health of caregivers is an important issue to consider. Prevalence of depression in caregivers is as high as 30%, and more frequent in female caregivers. Excessive burden is noted by families of patients according to higher frequency of behavioural disturbances, urinary and faecal incontinence and greater need for personal care. Anxiety levels are higher in dementia caregivers than controls and this may be associated with poorer physical health of carers of people with dementia. Other authors suggest that high costs could be considered an indicator of burden and stress because expenses are another concern to deal with.
Costs associated to health caregiver and impact on global costs in AD have not yet been estimated.
In summary, family caregivers provide the majority of care for people with dementia, and may experience significantly higher levels of depression, anxiety and burden. Risk factors associated with increased caregiver burden include being a women caregiver, age of patient and stage of dementia. – ncbi.nlm.nih.gov
The median survival of patients with AD is 9 years for persons diagnosed at age 65 years and 3 years for persons diagnosed at 90 years of age, and if patients do not die of other causes the disease is expected to progress to advanced stages. Global social costs of AD are dependent on severity of illness, on stage of disease and patient’s place of residence. In mild and moderate AD (early in the disease) the indirect costs are considerable and often exceed direct costs because most patients have an informal caregiver and are living in the community. Thus, the distribution of costs for community-dwelling patients is 40% for direct and 60% for indirect costs. This situation does not represent direct monetary expenditure but a heavy burden on caregivers. If this informal caregiver time is not available, caregiving must be provided by paid carers or supplied through patient institutionalization (two ways of converting indirect into direct costs).
Institutionalization in AD patients is proportional to severity: up to 62% of patients at a severe stage living at nursing home against 20% in moderate AD. When patients are institutionalized, costs shift from indirect to direct. Fifty to 75 percent of total cost of AD occurs during severe stages, principally generated from nursing homes expenses which represent the main expenditure in this illness. The impact of institutionalization cost is significant, while the impact of expenses of dementia on the family budget is sufficiently high to account for 66-75% of household income.
Because of the nature of AD, progressive impairment in cognitive, behavioural and functional status generates a significant burden on patient care. Informal caregiver time represents an important resource which increases with AD stage in community-dwelling patients. Studies show that informal caregiving time for community-dwelling patients with AD ranged from 11 to 70 hours per week. This time reduces for institutionalized patients. If this informal caregiver time were not available or becomes too burdensome, use of paid caregivers or institutionalization would be the consequence, with corresponding increases in direct costs.
About 80% of AD patients live at home and receive informal care while half of all non-institutionalized patients have more than one caregiver. Primary carers are predominantly women, either wife or daughter, and cultural differences can be important in this issue. General carers provide companionship, assist the patient in most non-instrumental or basic activities (eating, dressing, habitual cleanness generally, etc.) and instrumental activities (phone use, cooking, finance management, transport, drug provision, etc.) of daily living. These carer responsibilities increase as dementia progresses, at least until the point at which the person with dementia requires formal care (institutionalization or formal paid caregiver).
Due to the large amount of time spent on patient care, the impact on the health of caregivers is an important issue to consider. Prevalence of depression in caregivers is as high as 30%, and more frequent in female caregivers. Excessive burden is noted by families of patients according to higher frequency of behavioural disturbances, urinary and faecal incontinence and greater need for personal care. Anxiety levels are higher in dementia caregivers than controls and this may be associated with poorer physical health of carers of people with dementia. Other authors suggest that high costs could be considered an indicator of burden and stress because expenses are another concern to deal with.
Costs associated to health caregiver and impact on global costs in AD have not yet been estimated.
In summary, family caregivers provide the majority of care for people with dementia, and may experience significantly higher levels of depression, anxiety and burden. Risk factors associated with increased caregiver burden include being a women caregiver, age of patient and stage of dementia. – ncbi.nlm.nih.gov
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