This post was updated 30th March 2021
Here are some of the issues highlighted by recent independent studies:
- Breadth of devastation on family and finances a major factor
- In comparison, stroke (also often long term debilitating / distressing) – and no 1 killer heart disease cause little or almost no concern
- People fearful of residential care – and hospital too
- People blundering into care at last minute:
- No knowledge of alternative care options, or financial planning
- Worst-case care solutions often sought
- Family finances plunging into freefall
- Detailed regional statistics also available
Dementia has overtaken cancer as the most feared condition for the 55+ age group – as a result of finally shedding its taboo subject status.
New research by The Live-in Care Hub, live-in care specialists, which provides information on live-in care as an alternative to residential care, found that 34 per cent of adults of all ages say dementia – a broad category of brain diseases – is the condition they are most scared of experiencing in later life. Symptoms can include memory loss, difficulties with language, judgement, failure to recognise people, disorientation, mood changes, delusions and the gradual loss of ability to perform all tasks of daily living.
What are the different types of dementia and how common are they?
By far the most common form of dementia and one which most people are aware of is Alzheimer’s disease and one which according to Dementia UK accounts for around 60% of all dementia diagnoses in the UK, mostly affecting the over-65s. In most cases symptoms of Alzheimer’s are quite mild initially and research studies have shown that changes within the brain which take the form of abnormalities in chemicals and proteins can start to occur up to ten years before the onset of symptoms. Diagnosis of Alzheimer’s is through various memory, cognitive and functional tests which at the same time will attempt to rule out other causes of dementia.
Vascular dementia affects mainly the over-65s and around 17% of people in the UK have this form. It is caused by blood clots in the brain which reduce oxygen to the brain. It can, however, also sometimes be caused by blocked arteries or haemorrhage in the brain. Language and communication, reading, writing and memory can all be affected. Vascular dementia can be caused by lifestyle or by any number of natural diseases so in the initial stages of diagnosis lifestyle changes and appropriate medications are usually advised.
Lewy body dementia can develop at the later stages of Parkinson’s disease and is thought to affect around 10-15% of dementia patients. A single photon emission computed tomography (SPECT) scan is essential to obtain an accurate diagnosis to distinguish it from Alzheimer’s.
Whichever form of dementia your loved one has it’s vital to get the proper diagnosis to enable the correct care.
But while there is increased fear surrounding the subject, 52 per cent admit they feel more comfortable TALKING about the condition than they did 10 years ago (only a third would have been happy discussing it then).
The findings, published in its No Place Like Home report today follow an Age UK digest last month** which highlighted how loneliness can be a key contributor to Alzheimer’s, the most common form of dementia. Those with a high degree of loneliness are TWICE as likely to develop Alzheimer’s as those with a low degree of loneliness.
Dominique Kent from The Live-In Homecare Information Hub, a coalition of 13 of the UK’s leading companies providing 24/7 care at home for people suffering from dementia – and the elderly – said: “For decades, dementia in all its forms was the great unspoken – but thanks to people like author Terry Pratchett, who has been very open with his personal experiences of the condition, people are far more willing to talk openly about it.
“However, while breaking the taboo is leading to more people feeling comfortable about discussing dementia, it means it’s overtaken cancer as the biggest fear for the older age group in the UK…”
The breadth of devastation wreaked upon relationships, lifestyles and family finances makes dementia a far greater worry than any other illness. Top concern, from 78 per cent of respondents thinking about parents or elderly relatives, is: ‘I would end up resenting him or her – or feeling angry towards them’, followed by ‘we’d have to sell their home to fund care’ (72 per cent), then ‘they might have to go into residential care’ (70 per cent) and ‘my family and / or I wouldn’t be able to afford good care for them’ (69 per cent). 65 per cent also worried that it would ‘divide our family or cause relationship problems’.
In contrast, stroke, which, depending on its severity, is arguably just as debilitating and cruel for sufferers – and is the UK’s no. 4 killer – hardly caused concern at all. Only 9 per cent cited it saying: ‘I might have to look after them and I couldn’t or wouldn’t want to do this’. Heart disease is the nation’s no. 1 killer, but feared by just 4 per cent.
With horrific residential care home stories commonplace, it’s clear most people do NOT want to end up there (97per cent according to a recent poll***) if they become frail or ill. They are desperate to maintain their independence – and the same goes for their elderly relatives.
In the wake of the A&E scandals, only one in five people would be happy to be looked after in hospital. This dropped to just 14.3 per cent in Wales, but increased to 31.4 per cent in the North East.
One solution – for families AND the NHS
Dominique Kent continues: “This is where the life enhancing live-in homecare option can help families and the health service. It offers a very efficient and effective solution to one of the NHS’s major issues, that of hospital ‘bed blocking’, especially where dementia patients are concerned. With experienced carers on hand 24/7 to provide a safe and proactively monitored convalescence environment at home, patients can be discharged when they are declared well enough to leave. Carers undertake around 85 per cent of the work often conducted by nurses.
In fact, the report shows that more than any other option, people want to be looked after in their own home with high quality care (over half plumped for this even though the service is currently little known). Live-in homecare is not just about giving essential support such as washing, dressing, preparing meals and help with medication; it provides housekeeping and companionship too. Many carers and nurses are specifically trained to cope with particular conditions like dementia, Parkinson’s, stroke, MS or palliative care. Clients with pets are also kept together, which provides physical and emotional benefits, especially for people with dementia.
Families delaying care – and floundering with planning and finance
But while people are clearly talking more about dementia (and indeed most illnesses of old age), it appears they don’t know what to do – or where to turn when the time comes to exploring care options. Just a third would seek advice from their GP and less than a quarter would talk to any other health professional. And while 60 per cent would discuss it with their family, sadly, 40 per cent wouldn’t actually talk it through with the person going into care. Six per cent would not talk to anyone at all, but surf the internet for answers instead.
Kent concludes: “People are clearly blundering into care. Our Live-in Homecare Information Hub members are noticing families are leaving care planning later and later these days and are often at crisis point with a parent or elderly relative before they start looking around and have no time to research the options properly.”
Probably the most shocking of all is that with such a significant financial outlay on the horizon, just 1.9% of people spoke to an independent financial advisor to research and plan good quality care. Most respondents think such care charges are either ‘between £251 and £500 per week’ (21.4%) or ‘between £501 and £1,000 per week’ (22.5%), although in reality, whether it’s for residential care homes – or 24/7 live-in homecare, fees start from about £750 per week for carers and around £1,400 per week for nursing care, so they’re a long way out.
Finally, on live-in homecare, Dr. Glen Mason, Director of People, Communities and Local Government at The Department of Health concludes: “Live-in care is a long established but relatively unknown, growing alternative to residential and nursing care that substantially extends the care choice available to the individual. It allows someone with high levels of need to remain in their own home and community and lead a good quality life in familiar surroundings. I expect live-in care to continue to grow in popularity and to become the high quality first care choice of many people.”
* A nationally representative survey of adults was commissioned by The Live-In Homecare Information Hub via market research specialist Censuswide during January 2015. 1,040 over 16 year olds were surveyed.
**Age UK’s monthly ‘Later Life in the United Kingdom’ report
*** Commissioned by live-in care provider Consultus Care – and conducted by One Poll
Notes to editors:
The total number of people with dementia in the UK is forecast to rise to 940,110 by 2021 and 1,735,087 by 2051, an increase of 38% over the next 15 years. By 2037, the number of carers will have to rise to 9 million to keep pace with the rising levels of frail and disabled people. In the future, most people’s lives will include at least one episode of caring. Source: NDS 2009 and updated in Alzheimer’s Society ‘Dementia UK’ 2014 report
The Live-in Care Hub
Hub website www.liveincarehub.co.uk is designed to be a vital information resource to families interested in live-in homecare, where a personal carer lives in, 24 hours a day. Many carers and nurses are specially trained to cope with particular conditions such as dementia, Parkinson’s, stroke and MS, or to provide palliative care. Live-in care at home offers them a real alternative. With no rigid rules or timetables, each day is planned around the person or couple, giving a sense of independence and dignity for them and total peace of mind for their family.
The Live-In Care Hub is a not-for-profit partnership – find out more here.