Professor Sube Banerjee from Brighton and Sussex Medical School on the challenge of dealing with dementia
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The number of people with dementia has doubled in 20 years and will double again in three decades. So how will we care for people with the condition? Professor Sube Banerjee, from Brighton and Sussex Medical School, says that family comes first
Perhaps this morning you found yourself groping for a proper noun.
I regularly find myself staring blankly into cupboards with no idea what I was looking for. Some people are famous for losing things.
These lapses of memory can be disquieting, but they are nonetheless a part of the human condition.
Memory is such a preoccupation in our culture that there is a whole genre of film devoted to amnesia. Julianne Moore won a BAFTA for her portrayal of a woman with early-onset Alzheimer’s in Still Alice. Two of the best-selling books of 2014, The Night Guest by Fiona MacFarlane and Elizabeth is Missing by Emma Healey, had protagonists with dementia.
For Professor Sube Banerjee, formerly Clinical Lead for the Department of Health’s National Dementia Strategy and currently Professor of Dementia and Associate Dean for Strategy at Brighton and Sussex Medical School, this is unsurprising. Eight hundred thousand people in the United Kingdom have dementia, twice the number of 20 years ago. In 30 years that number will double again. Dementia costs the country £23bn per year, and affects a quarter of the patients in our general hospitals.
There are a number of causes, of which Alzheimer’s disease is the most common, but others include vascular dementia and Lewy body dementia, which is associated with Parkinson’s.
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“The cardinal thing about dementia is that it’s a progressive illness,” said Professor Banerjee. “It is an entirely normal thing to occasionally not find the right word to say or forget the odd name or face. But when it starts becoming a persistent pattern and begins to cause problems, that’s when people need to be a bit concerned.”
Memory is at the heart of these difficulties, but planning and navigating are among the other processes that can be affected. Both expressive and receptive language can fail.
In the National Dementia Strategy, Professor Banerjee pointed to the importance of early diagnosis. The key to living well with dementia, he said, is knowledge. “What you have is an illness that starts absolutely insidiously. You don’t know it is happening. Then you, or your family, may notice one or two symptoms and the question is how do you work out what is going on? How do you go from having a concern to knowing what’s going on and what to do afterwards? That’s what good quality memory services are for.”
Care of dementia patients has been impacted by taboos surrounding the condition and Professor Banerjee points to similarities with the way cancer was regarded by previous generations. “In the 1950s and 60s people used to say ‘well, you can’t tell him he’s got cancer, he’ll get upset.’ You wouldn’t dream of saying that now. We have recognised that as being old-fashioned and unhelpful medical paternalism, that it is an individual’s right to know what’s happening to them.
“Quality of life depends on being able to make your own choices. If you don’t have good information, you can’t make choices. If you deny people a diagnosis, as the system does in many cases, then you deny people the chance to make those choices for themselves.”
Remarkably, Professor Banerjee says that less than half the people with dementia are aware of their condition as they simply haven’t been diagnosed. That is a lot of families facing unnecessary confusion and pain.
“It is so much easier to care for someone if you know the reason they’re forgetting your birthday is that they have an illness that makes them forget,” said Professor Banerjee. “It’s much easier to understand social withdrawal or difficult behaviours if you can ascribe them to an illness rather than just someone being unpleasant.
“You can also then access other help. There are a lot of things you can do to live well with dementia, and they are things like planning for the future as soon as you can: discussing how you want to be treated later in life can mean you have better care. Older people are often perfectly willing to discuss death and dying and how they want to be treated if you give them a chance. The people who are squeamish about it are generally the younger generation and the doctors.”
Psychological, social and educational support is key to enabling people with dementia to live well: “There is evidence to suggest that four or five sessions of good quality information, given at the time of diagnosis, delays institutionalisation overall by 28 per cent, or by 558 days, on average. That is an extraordinary benefit for something done early on in the illness. The problem, of course, is that you are then investing in a health intervention that saves a social care spend six, seven, 12 years down the line. Family is at the very centre of support. A dementia sufferer with a co-resident carer is 20 times less likely to need to go into a care home, according to Professor Banerjee. Carers are an immensely valuable resource. They generally tend to be female, and often the spouse, daughter or daughter-in-law of the individual. But there are very many challenges involved in caring for someone with dementia: not least because the person might not understand what is happening to them: “Having someone fiddling with your buttons, if you believe you don’t have any problems, is really difficult. It might be just about acceptable if it’s your wife or your husband, but if it’s someone that comes in for 15 minutes in the morning who you don’t know, that can feel like an assault.”
Caring for someone who is confused and possibly resistant – and who might not appreciate your efforts – can be difficult. Again, knowledge of a possible sets of behaviours, and why they are happening, is key.
“The way to living well with dementia is to get help and support, and the best help and support comes from families. Without them, the whole system would break down. But statutory services like health and social care have a part to play as well, and we haven’t quite worked out what those roles are,” said Professor Banerjee.
“This is the single greatest health and social care challenge that faces us in the developed world. Sorting this out is the work of a generation – our generation.” And groundbreaking work in Brighton may provide the key.
• The Alzheimer’s Society: www.alzheimers.org.uk
• Care for Carers: www.careforcarers.org.uk
• Carers Centre for Brighton & Hove: www.thecarerscentre.org
Fact file by Professor Sube Banerjee
• In the UK, family carers contribute 1,340,000,000 hours of care for people with dementia each year.
• Two-thirds of people with dementia live in the community and family members are the most important source of care. Caregiving extends beyond hands-on care to include anticipating future support needs, monitoring and supervising, preserving the individual’s sense of self and helping the individual fulfil their social roles.
• Fifty per cent of those with dementia in the community receive 35 or more hours of family carer time per week and a particular challenge in dementia is that the person being cared may be resistive to care, agitated and lacking in insight into their own needs.
• Dementia costs the UK £26bn a year, two thirds of this cost (£17bn) is covered directly by people with dementia and their families, with 600,000 family carers contributing £12bn of unpaid care, and the rest spent by families on paying for private social care.
• Without the work of family carers, the formal care system would collapse. Supporting family carers is government policy, via its Carers’ Strategy, the Care Act and the National Dementia Strategy but much, much more needs to be done to support them by health services, by social services, by the benefits system and by society as a whole. Investing in family carers is the best possible investment to improve the health and well-being of people with dementia.