Dementia patients should not be hidden away
ALICE THOMSON
the times
Instead of fleeing from those whose minds are slipping,
we must help them to live out their lives surrounded by love
Links added. Numbered reference system added to aid discussion.
Comment at the foot of the page.
1 - The text
- Can you please tell me what year we are in? Season? Day? Month? Thank you. Could you tell me where we are? Which county? Town? Surgery? Floor? Great, well done. Now name the three objects I am pointing at (pencil sharpener, banana, screwdriver). Fantastic. Could you count backwards from 100 by sevens, just the first few is fine (93, 86, 79, 72, 65). Alternatively, could you spell world backwards? (D-L-R-O-W) Earlier I showed you three things. Can you tell me what they were?
- This is the standard test GPs give patients who they think may be suffering from dementia. more and more at foot of that page Some might also ask you to draw a clock face if you tell them you keep leaving your phone in the fridge. You could then be referred to a memory clinic and possibly told gently (I hope more at foot of page) that you may have Alzheimer’s or dementia. It will be of little comfort to know that 850,000 people share your condition or that this week it was announced that dementia has overtaken heart disease as the leading cause of death in England and Wales. Dementia becomes Britain’s biggest killer here.
- There is, as the consultant or GP may tell you, no known cure. A better diet, statins or chemotherapy can stall type 2 diabetes, heart disease or cancer but nothing can reverse dementia, yet it is still the most stigmatised of illnesses, with sufferers until recently dismissed as “batty”, “gaga” or “senile”. More on stigma here.
- But you shouldn’t despair. My great- grandfather and grandfather, both academics who relied on their minds, had dementia. My father has vascular dementia. One of my brothers chose to have his DNA tested, I haven’t. But I’m increasingly aware of the upsides as well as the downsides.
- For as long as possible, those with dementia should stay at home in a familiar environment because they can be traumatised by alien surroundings. see Comment Most care homes discriminate against those whose minds are slipping. They don’t like “wanderers” and certainly not anyone, such as my husband’s stepfather, who could occasionally lash out as well as be loving. If they do accept trickier residents, usually at inflated prices, these vulnerable people are often neglected in cell-like conditions. The rare care worker can behave atrociously , believing a residents will forget mental and even physical abuse more. But they aren’t goldfish. However discombobulated more or inarticulate, they remember raised voices and rough treatment.
- However being totally looked after, without any opportunity to take personal responsibility, can lead to feelings of helplessness, lowered self-esteem, and even depression.
- Everyone needs to feel independent to some extent and everyone wants to feel they can contribute to others, however limited that independence or that contribution might have to be. more here or read on - no adverts
- Hospitals are often equally unwelcoming despite one in three beds being expensively occupied by dementia patients. The medical establishment treats dementia as part of old age and there is woefully little research. Some 5,755 international trials are underway for cancer drugs none here , compared with 99 for Alzheimer’s and 14 for vascular dementia. evidence for a specific 14?
- Even so my father, helped by my mother, is happier than most people I know. There are challenges: my mother has just found the bathplug, missing for a fortnight, between the photograph albums; and he regularly unstacks the dirty dishwasher. In hospital, on his own and disorientated, he ripped off his drip and bandages after a hernia operation. Ten years after being diagnosed, he no longer reads or writes, but he loves looking at the changing seasons and painting, absent-mindedly practising mindfulness. He instinctively appreciates no longer worrying about tax returns and still enjoys meeting people.
- There are many gadgets that help: speaking watches now he can’t tell the time; radios with only one button. Children and dementia sufferers make good companions. My father points out butterflies to the grandchildren and watches Kung Fu Panda on rainy afternoons.
- For those whose minds are slipping, we compound their sense of isolation by fleeing from them. They should be able to continue to live in the world they helped to create. My father recently went to a lecture and dinner. He tried to talk to the woman next to him. She turned away but he persisted. Eventually he asked her (she was in her forties) what she had done in the war. She fled. A week later a close friend sat next him and when he asked her the same question they had a spirited discussion about what it had been like to be evacuated to America. We were all riveted. Dementia sufferers can make the best conversationalists as they are less inhibited.
- They shouldn’t be hidden away behind hedges in lumpy institutional armchairs or forgotten on hospital wards or visited for 15 minutes a day by harassed, underpaid carers.
- Hospitals could allow family to stay with dementia sufferers after an operation so there is someone they know at hand when they wake in the night. Elderly spouses, bearing the brunt of their partner’s illness, need support and respite from day centres. Dementia sufferers living alone require longer visits to ensure they remember not just to eat but how to use their toaster or lavatory. Care homes should become more homely and be rewarded for taking challenging residents, as schools are for accepting pupils with learning difficulties. Staff in shops and on public transport could be taught to assist those with memory problems as they do those with other disabilities. Books such as Elizabeth is Missing about a dementia sufferer turned detective break taboos as did Jack Woolley’s struggle with Alzheimer’s in The Archers.
- In Kung Fu Panda the elderly Oogway tells Po: “Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the ‘present’.” We can enable dementia sufferers to enjoy the present, but only by ensuring that we take care of their future.
2 Comment 1
"For as long as possible, those with dementia should stay at home in a familiar environment because they can be traumatised by alien surroundings." (9)
2.1 On the contrary, read the Ross Dementia Meeting Centre Caree page here .
2.2 The Telegraph
The reasons for including further text include, for some, an introduction to experimental procedure.
End of comment.
- We all love to be looked after, particularly when we’re tired or a bit under the weather.
- However being totally looked after, without any opportunity to take personal responsibility, can lead to feelings of helplessness, lowered self-esteem, and even depression. A good example of newspaper malpractise - the sentence in the Telegraph is identical to 1o above. Who wrote it first is indiscernable. Try here but Facebook is involved.
- Everyone needs to feel independent to some extent and everyone wants to feel they can contribute to others, however limited that independence or that contribution might have to be. more here or read on without adverts
- We all love to be looked after, particularly when we’re tired or a bit under the weather. However being totally looked after, without any opportunity to take personal responsibility, can lead to feelings of helplessness, lowered self-esteem, and even depression.
- Everyone needs to feel independent to some extent and everyone wants to feel they can contribute to others, however limited that independence or that contribution might have to be. Psychologists have long recognised the link between depression and a perceived loss of the ability to make choices about daily living.
- As early as 1930, Alfred Adler described the need to control one’s personal environment as ‘an intrinsic necessity of life itself’.
- This is one of the most important issues we face today. Thanks to improved medical care, many of us are living longer. Are we living too long? here But even though we may remain well and clear-minded, as we get older we’ll become frailer and we’ll need more help.
- How is it possible to maintain a balance between helping someone and rendering them helpless?
- In 1976, Ellen Langer and Judith Rodin decided to explore this issue. They carried out a study in a nursing home in Connecticut, a home rated as one of the best in the area. This home offered good medical care, as well as cheerful accommodation, excellent hygiene standards and good recreational facilities.
- Ninety-one residents were assigned to one of two groups. In the first group, residents were told how much the staff wanted to look after them and help them feel happy and comfortable. In contrast, staff spoke to the second group about the importance of making decisions themselves regarding their care. Residents in both groups were also offered a plant as a gift from the staff. Those in the first group were assured that staff would look after their plants for them; in the second group, they were told that they would be looking after their plant themselves.
- During the next three weeks, residents were asked to fill in questionnaires about how happy and active they felt. At the same time, staff rated the residents’ behaviour - how often they socialised, and how active and happy staff perceived them to be.
- After only three weeks, residents in the ‘independent’ group were rated - both on their own ratings and on assessment by staff members - as significantly more active, more mentally alert, and happier than those in the ‘looked-after’ group. They were also significantly more involved socially, both visiting other residents and conversing with staff. A follow-up study on this group, as well as other similar studies, showed increased health benefits, and even increased longevity, when individuals are given more personal choice and responsibility - even to look after something as simple as a houseplant.
- This study, more and those that followed, demonstrate just how vital it is that we think carefully about the best way to look after others. Fostering total dependence is not ‘good care’. Instead, it’s important to allow for personal decision-making and personal responsibility whenever possible.
3 Comment 2
They shouldn’t be hidden away behind hedges in lumpy institutional armchairs or forgotten on hospital wards or visited for 15 minutes a day by harassed, underpaid carers.
That was 1.13 and it supports 2.1.