A few months ago I found an elderly man in my street, cowering against a wall. It was dark and he was clearly disoriented, upset and frightened. He wasn’t fully dressed and appeared to have wet himself. I confess I had no idea what to do or who to call. The police? The ambulance? Wouldn’t that frighten him even more? He was too terrified to answer my questions, which didn’t help. Luckily, another passer-by (clearly more competent than I am) came to my aid, guessing the man had escaped from an old people’s home a few blocks away. We joked that stray dogs were better catered for than stray dementia patients (which I can confirm – my dog has escaped twice and each time I’ve been hugely impressed by the prompt service of Battersea Dog’s Home).
I mention this in the light of the week’s big news: dementia is now the leading cause of death in England and Wales, having overtaken heart disease. For many of us, the future looks confused. Nor can we rely on an imminent pharmaceutical break-through. While there are almost six thousand international trials underway for cancer, there are a mere 99 for Alzheimer’s and 14 (yes, 14!) for vascular dementia.
An interesting article by Alice Thomson in The Times this week reminded me of the man I found in the street. According to Thomson (whose father has dementia) ‘For as long as possible, those with dementia should stay at home in a familiar environment because they can be traumatised by alien surroundings. Most care homes discriminate against those whose minds are slipping. They don’t like ‘wanderers’ … these vulnerable people are often neglected in cell-like conditions…Hospitals are often equally unwelcoming despite one in three beds being expensively occupied by dementia patients.’ She argues that dementia patients should be included in society and not hidden away, and makes a powerful case for encouraging children and dementia patients to spend time together. This certainly resonated with me. My demented grandmother loved it when my children (her great grandchildren) visited. They, unlike we eyeball-rolling adults, were completely unfazed by her odd behaviour. Thomson also suggests training shop and transport staff to handle people with dementia. But why stop there? Why not train everyone? If I can find a confused and frightened man on my street and not know who to call, shouldn’t I be trained too?
Of course, I still like to believe that life style (specifically diet and exercise) can help delay or deter the onset of dementia. So while I agree with Thomson that we need to radically change the way we treat those with dementia, I’m also hopeful that making significant lifestyle changes can (perhaps) reduce the chances or severity of dementia. On that note, I was intrigued by an account of something called Dimethylaminoethanol (DMAE), found in anchovies, sardines and salmon, and thought to increase brain levels of a neurohormone which helps the transmission of impulses between brain cells. DMAE has been investigated for several years, both for its anti-aging effects and for its ability to help those with ADHT. In dementia patients, DMAE given three times daily for four weeks lessened behavioural changes in 10 out of 14 subjects. Applied topically, it even increased the firmness of the skin – although I don’t recommend slapping sardines on your face. You can read more at http://blog.lifeextension.com/2016/11/is-dmae-missing-from-your-anti-aging.html. But I, for one, shall continue regularly eating oily fish.
Finally, we apologise for our recent ‘sabbatical’ (pressures of work and family) and would like to thank everyone who emailed us to check we were still alive. We are!
The recipe below was given to me by a Sicilian friend and although it may sound peculiar, I think it’s delicious. I use boil-in-the-bag kippers (fabulously inexpensive) although I gather smoked herrings in Sicily are a little different. The smoky, salty flavour of the fish works wonderfully with the tangy oranges and crunchy fennel and I love the fact that this can be made in five minutes from three readily available ingredients. My purist Sicilian friend insists on using blood oranges – but any oranges will do.
WINTER FISH SALAD (serves 5-6)
- 4 oranges (blood oranges look good)
- 4 medium fennel bulbs
- 4 smoked herrings (or kippers, cooked and served warm or cold)
- Olive oil and salt
Peel the oranges with a knife (removing all pith) and slice crosswise into 1 cm slices. Slice the fennel thinly.
Bone the herring and cut into small pieces.
Lay the orange on a plate, top with the fennel and then with the herring. Generously drizzle over some olive oil (a couple of tablespoons) and sprinkle with rock salt (a good teaspoon) and the chopped green fronds from the top of the fennel bulbs.
Serve with crusty bread as a starter or light lunch.
Annabel
A thoughtful and encouraging blogpost.
Thanks Veronica!
Hi Annabel, You make several interesting points here drawing on Alice Thomson’s article.
Firstly the good news is that Dementia Friends is a well publicised Alzheimer’s Society initiative that is gaining good ground… https://www.dementiafriends.org.uk that anyone can sign up to and attend a session. It is well worth it.
Care of dementia patients is a very emotive subject and as I am sure you know every case of dementia is different as is every situation.
Specialised care homes are now being built due to demand and cater specifically for residents with memory impairment. Most operate a two-tier structure, one nursing floor for sufferers who are in the final stages and a residential floor for dementia patients who are unable to look after themselves at home or have carers. Flow of funds is a big consideration, many people have to sell their houses to fund care. Others have no choices.
Ideally we probably all wish we could be cared for at home in our own environment if that is possible. But sometimes it is a necessity to have to move a relative to a protected environment.
Once dementia takes hold two of the hardest side effects to both treat, help and manage are sun-downing and night wandering. They come at the very worst time of day in terms of having help in the home. It is very hard to find help in the evenings and nighttime and the costs are high. Live-in care can be a great option but you still have the situation where a carer has a very disrupted sleep cycle and their weight of responsibility is considerable.
This is why it is so difficult to care for loved ones at home after a certain point. Carers tend to be older and disrupted nights are very damaging to their well-being and capacity to care for their partners or parents. Think young children all over again with no upside whatsoever. It is torturous to be woken through the night with different levels of anxiety, worry or just that they think it is time to get up, go to work or go somewhere even if it is pitch black outside.
A specialist care home is often as busy at night as it is in the day. It is extremely difficult to reason or explain to sufferers especially those that suffer from ‘sundowning’. There is no ‘give a stronger sleeping pill’, it’s not possible as the risk of falling whilst night wandering is so high (which would put further pressure on ambulances and hospitals).
Having dementia sufferers together can be rewarding (day centres are a great resource for both sufferers and carers), they can chat to each other and interact in a way that is not possible in the ‘real world’. They have warmth, food and distraction, music and activities. Quite often people who have been quite reserved will hug and give each other reassurance many times a day. Some who have never liked dancing will dance or conduct to music. I have met many wonderful carers who treat residents with utmost respect, talk to them about their past lives and help them feel through the confusion whilst making sure they are not embarrassed if they need a pad changing.
Out there in the real world everyone asks too many questions, life is fast and unexpected, everyone talks too quickly and put demands on the sufferer that can make them frustrated (with themselves mostly) and anxious. But being able to provide a calm home with good care in the sufferer’s own home is a very tall ask of anyone and as time goes on the reality of looking after a sufferer at home is very different from other health problems. Being a carer can be a very lonely existence.
On mixing children and dementia sufferers…Although many dementia patients would benefit from mixing with children for small periods of time as Alice mentions, the other side is that quite often young children make dementia patients very anxious and stressed as they (for example) think that if they climb on the sofa they will fall and a plethora of other worries so mixing the two is not necessarily an easy task. Small bursts are good but the noise and ongoing frenetic activity can easily fuel agitation and confusion in many.
As you say, Hospitals are under huge pressure from dementia patients as they require a very high level of care that is totally beyond an NHS or private hospital’s current remit and budget. It is hard to know how this can change in the near future and will be a huge burden.
But if everyone could read up on dementia, understand a few basics about how best to talk to sufferers (eg. don’t ask them questions instead talk with them, don’t contradict, just reassure) then that has to be a positive, if small step forward.
There are two very good reads that can help understand a sufferer’s world:
Contented dementia by Oliver James and also a beautifully written article that everyone should read:
https://www.theguardian.com/society/2015/oct/20/the-deviousness-of-dementia by Dasha Kiper.
Unfortunately there is also the problem of research into dementia in living patients. Many sufferers are very happy to partake in research and scans but there comes a point when they are unable to cope with the visits to hospitals or research programmes and further verbal tests are too upsetting. So there is a big gap in knowledge from that point up to the point to their death. I’m hopeful that the amount of lateral thinking going on in this field will mean that we will start to pick up clues of what is happening and how we might try and prevent this horrible affliction. Certainly recent news flows have been very encouraging relative to the last ten years. Let’s hope!
HI Louise, I’d love to mould this into a guest post. Will be in touch… Thanks for the long and clearly-written reply!
Good to see you back again. The story about the elderly gentleman with dementia was distressing and it struck a chord when you wrote that stray dogs are often looked after better than “stray” people.
I was just thinking about a recipe that I used to make years ago with smoked kippers. I haven’t found it yet, so I’ll try yours instead. You are right, it does sound a bit different. My recipe was boring and more traditional (with rice and milk?) but strangely tasty.
Thanks Gaynor. I love kippers and i’d love to find some more recipes where the kippers are partially disguised and not so kipper-ish as i’m not sure others love them as much as i do! let us know if you find your kipper recipe…