Proportion of those needing care that have dementia, by country, Source: World Alzheimer Report, Alzheimer’s Disease International.
By Linda Belardi.
Cash-strapped governments seeking to curb health spending risk downplaying the role of residential aged care in the care of people with dementia, the latest World Alzheimer Report 2013 warns.
The report produced by Alzheimer’s Disease International (ADI), which provides an annual snapshot of global trends and policies, said the political shift away from residential care to home care risks unfairly stigmatising users and providers of care facilities.
The report funded by Bupa also questioned the popular claim that people with dementia prefer to be cared for at home and that this setting delivered higher quality and cheaper outcomes.
“It is often claimed that people with dementia would prefer to live at home for as long as possible cared for by their family, that this option is associated with better quality of life, and that care at home is cheaper than care in a care home. None of these rationales is fully supported by evidence,” the report said.
In fact, very few studies have examined these questions in a rigorous way, and the existing evidence calls into question the universal validity of these assumptions, the report said.
Lead author Professor Martin Prince from King’s College London said care facilities were a preferred option for a significant minority of older people, particularly at the end stages of dementia and subjective quality of life was similar for those with dementia in residential care and those being cared for at home.
The authors also said the societal costs of care in formal aged care settings and in the home were similar, when an appropriate cost was attached to the unpaid inputs of family carers.
The report said care facilities would continue to play an important role in the provision of long-term care for people with dementia but acknowledged that there was much to do to improve the quality of care and quality of life for people with dementia living in residential aged care.
The report estimated that around one-third to one-half of people with dementia in high income countries, and around six per cent of those in low and middle income countries were being cared for in nursing homes.
The authors said reducing transitions into residential aged care was an important cost-minimising strategy of governments but this policy also came with risks.
“There is a clear danger that the cost containment policy agenda in high income countries, asserting the universal preference for care at home, and the better quality of life and care in the home setting may unfairly stigmatize users and providers of care home services,” the report said.
“Care in care homes is, and will remain, an important component of the long-term care sector, and should be valued as such. More attention needs to be given to assuring the quality of care in these settings, which is best judged through the quality of life of residents.”
The authors said collecting quality of life and service satisfaction outcomes as well as compliance data would help to inform choice and encourage competition based upon driving up standards. They said gathering this information may be more effective than compliance regulation alone.
The ADI report said that action required to improve the quality of care for people with dementia should revolve around:
1 Measuring and monitoring the quality of care
2 Promoting autonomy and choice
3 Coordinating and integrating care for people with dementia
4 Valuing and developing the dementia care workforce
The report also advocated for the importance of case managers to support people with dementia and their families to access information and exercise choice.
In relation to global investment in research, the ADI report called for at least a tenfold increase in current levels of investment to bring research funding in line with other conditions, such as cancer.
Responding to the release of the ADI report on Friday, National President of Alzheimer’s Australia Ita Buttrose called for a new National Framework for Action on Dementia to be released by the Australian government.
“The last Framework agreed by Health Ministers terminated in 2010 and a revision is still under consideration. That is not good enough,” Ms Buttrose said.
She said there are more than 320,000 people with dementia in Australia and an estimated 1.2 million who are involved in their care.
The World Alzheimer Report 2013 was researched and authored by Professor Martin Prince, Dr Matthew Prina and Dr Maëlenn Guerchet on behalf of the Global Observatory for Ageing and Dementia Care.
Key report facts and statistics:
Between 2010 and 2050, the total number of dependent people worldwide will nearly double from 349 million to 613 million, but the numbers of older people with needs for care will nearly treble from 101 to 277 million.
Age-specific prevalence of dementia may be sensitive to improvements of decrements in population health, with reports of recent declines in prevalence in Europe, and increases in China.
Dementia and cognitive impairment are by far the most important contributors, among chronic diseases, to disability, dependence, and, in high income countries, transition into residential and nursing home care.
Compared with other long-term care users people with dementia need more personal care, more hours of care, and more supervision, all of which is associated with greater caregiver strain, and higher costs of care.