Dementia - Disability, Burden And Cost

GBD - Global Burden of Disease

Dementia is one of the main causes of disability in later life. In a wide consensus consultation for the Global Burden of Disease (GBD) report, disability from dementia was accorded a higher weight than that for almost any other condition, with the exception of spinal cord injury and terminal cancer. Of course, older people are particularly likely to have multiple health conditions — chronic physical diseases affecting different organ systems, coexisting with mental and cognitive Dementia.

Dementia, however, has a disproportionate impact on capacity for independent living, yet its global public health significance continues to be underappreciated and misunderstood. According to the GBD estimates in The world health report 2003, dementia contributed 11.2% of all years lived with disability among people aged 60 years and over: more than stroke (9.5%), musculoskeletal Dementia (8.9%), cardiovascular disease (5.0%) and all forms of cancer (2.4%). However, the research papers (since 2002) devoted to these chronic dementia reveal a starkly different ordering of priorities: cancer 23.5%, cardiovascular disease 17.6%, musculoskeletal dementia 6.9%, stroke 3.1% and dementia 1.4%.

The economic costs of dementia are enormous. These can include the costs of “formal care” (health care, social and community care, respite care and long-term residential or nursing-home care) and “informal care” (unpaid care by family members, including their lost opportunity to earn income).

In the United Kingdom, direct formal care costs alone have been estimated at US$ 8 billion, or US$ 13 000 per patient. In the United States, costs have been estimated at US$ 100 billion per year, with patients with severe dementia costing US$ 36 794 each (1998 prices) (23, 24). A more recent estimate is of US$ 18 billion annually in the United States for informal costs alone. In developed countries, costs tend to rise as dementia progresses. When people with dementia are cared for at home, informal care costs may exceed direct formal care costs. As the disease progresses, and the need for medical staff involvement increases, formal care costs will increase. Institutionalization is generally the biggest single contributor to costs of care.

Very little work has been done on evaluating the economic costs of dementia in developing countries. Shah et al list five reasons for this: the absence of trained health economists, the low priority given to mental health, the poorly developed state of mental health services, the lack of justifi cation for such services, and the absence of data sets. Given the inevitability that the needs of frail older persons will come to dominate health and social care budgets in these regions, more data are urgently needed.

Detailed studies of informal costs outside western Europe and North America are rare, but a careful study of a sample of 42 alzheimer’s disease patients in Denizli, Turkey, provides interesting data . Formal care for the elderly was rare: only 1% of old people in Turkey live in residential care. Families therefore provide most of the care. The average annual cost of care (excluding hospitalization) was US$ 4930 for severe cases and US$ 1766 for mild ones. Most costs increased with the severity of the disease, though outpatient costs declined. Carers spent three hours a day looking after the most severely affected patients.

The 10/66 Dementia Research Group also examined the economic impact of dementia in its pilot study of 706 persons with dementia and their caregivers living in China, India, Latin America and Nigeria.