A. Professor June Andrews FRCN, Director, Dementia Services Development, University of Stirling.
According to Alzheimer’s Disease International, there are 9.9 million new cases of dementia worldwide every year. The number is increasing fastest in low to middle income countries. This is because people there are living longer, as their health and social care systems improve. There was a time in some countries when almost no-one lived long enough to develop dementia. Now they do.
Current UK situation
This rise in dementia brings with it innovative ways of supporting people with the condition. This means the UK can learn from the approaches of other countries, although the situation in the UK is improving in many ways. Here, there is clear recognition of the human rights of people with dementia, and research is being applied into the design of environments, staff education, nutrition, hydration, exercise and reduction of stress that can reduce dementia symptoms. This, in turn, makes life easier for staff, families and the person with dementia. Earlier diagnosis is making it easier for individuals and families to make preparations for the future and increased public awareness is important.
Some other parts of the world are not so far forward in human rights, although many have interesting dementia care ideas from which we can learn. People with dementia, in the past, have been denied the rights and freedoms available to others. In many countries, physical and chemical restraints are still used extensively in care facilities for older people and in acute care hospitals, even when regulations are in place to uphold the rights of people to freedom and choice.
In Hong Kong, for example, there is still use of physical restraint for people with dementia. On one visit, we saw a distressed older person in a straight-jacket strapped to the bed in an acute hospital. Significant improvements have been made by enlightened nursing staff, although more work needs to be done. Each country is starting from a different point.
Dementia advocacy organisations such as the Alzheimer’s Society, know this also still happens here, and it shows up to the wider public in adverse news reports. However, if it does sometimes happen, it is regarded with horror or embarrassment when it is uncovered. It, hopefully, happens more often out of ignorance of alternatives and poor supervision, than being truly the first line of management of a practical problem.
Drawing international comparisons
This year, the Dementia Services Development Centre (DSDC) at the University of Stirling is celebrating 25 years, with a Festival of Ideas and an international dementia conference. In the last 12 months, my colleagues and I have visited and worked in Hong Kong, Singapore, New Zealand, Australia, Washington, Canada, Saudi Arabia, Europe and the UK. In addition, about 1,000 visitors every month come to the DSDC in Stirling, from every part of the globe, sharing ideas. This knowledge-sharing has given us fresh insights into services in a range of other countries which give an indicator of where the UK could be heading.
The funding of care in the UK is complex and the systems are fragmented and different between the four countries. It is equally complex in many other places. In Canada, much of the care is funded through the Government insurance system.
Remarkably, in Singapore there is a legal requirement for children to fund the care of their parents. When we consider the concerns in the UK about top-ups, the depletion of savings and selling of the family home to pay for care, is this radical Singaporean solution the future for us? Someone will have to pay, and, if not the taxpayer, it’s likely to be our children in years to come.
Singapore has an established dependence on foreign domestic workers to support people at home by providing live-in dementia care. However, as countries become richer and grow economically, foreign workers are increasingly reluctant to migrate for work.
In the UK some people with dementia never have to go into a residential facility. They are able to stay at home with support from family, friends, health services, social services and charities. Internationally, it is accepted that being able to stay at home is the best outcome. There are two reasons for this. Firstly, it is what people with dementia say they want. Secondly, the residential care model is becoming increasingly challenging to deliver, with difficulties such as rising costs and impending workforce shortages. However, a good care home is an absolute necessity for some people, particularly at the end of life. Although, in some countries residential care is never an option, even at the end of life, because the services required have not been developed.
In the UK, we are seeing the average length of care home stay dropping. This pattern is mirrored in Canada, where, like the UK, there is a mixed economy of private, public and charitable sector care providers.
In India there are few residential care facilities. Home-based care provided by relatives is the norm. However, this is changing; as family dynamics change, more women join the workforce and their families get smaller.
When looking at China, there is a tradition of keeping people at home. High net-worth individuals are able to buy in better care than they could get in a care home, often at lower cost, and as a consequence take this alternative.
Changing demographics as result of the one child policy and the increased physical health of China’s ageing population means there is likely to be an increasing need for care homes. However, central government regulation of facilities is underdeveloped.
There are, however, nursing homes that have been set up by the Government and there are several private facilities in cities such as Beijing and Shanghai. The country needs trained nursing staff, but work is also required on how to impart the kind of values-based training that translates very well between the UK and other similar health systems like Malta, Australia, Canada and New Zealand with shared histories and language.
Chinese cultures face an issue around people dying in a facility. Because of this, the dying person may be moved to the local hospital at the very end of life. This is a situation that UK operators will recognise, but it happens here for different reasons. In any case, it is distressing for the person with dementia and an expensive move for either the family or the authorities.
Other international approaches
In Germany, about 40% of moderate to severe cases of people with dementia are institutionalised, and the majority of patients in nursing homes do not receive special care programmes. In Poland, the cost of care homes is high and they currently lack effective scrutiny.
In Hungary, many older people still live close to their relatives and are not dependent on cars, meaning the family unit is close by to offer care and support. Until recently people with severe dementia symptoms were housed in psychiatric hospitals but new legislation shifted this to nursing homes, though most of them have waiting lists.
Saudi Arabia also has a tradition of family care, but changing families and the ageing population make this virtually impossible in modern times. In the absence of a care home tradition, older people spend longer times in hospital.
Internationally, names that are given to residential facilities reflect a different cultural approach in each country. In the USA, a nursing home is also called a ‘skilled nursing facility’, ‘long-term care facility’, or ‘custodial care’. In the UK, the term ‘custodial care’ is mainly used for prisoners. In the US it relates to those who need assistance with personal care and daily living tasks, not nursing care, and is mainly for those with dementia.
Places to envy
Some of these differences are unique to each country, but others offer us learning. Elsewhere in the world, there are examples to envy. Australia has a fantastic funding system, New Zealand has a well-established care village concept and the Netherlands has a system of medical care home specialist doctors.
Where I would like to have dementia? Increasingly, I think of the highly-developed care services for people with dementia in Japan. Through long-term care insurance or health insurance, people can access residential care services, in specialist centres. Otherwise, right here at home.
Professor June Andrews FRCN is Director of the Dementia Services Development Centre at the University of Stirling. www.dementia.stir.ac.uk/international-dementia-conference Twitter: @ProfJuneAndrews
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