Sunday 8 September 2013

Dementia and Care of the Elderly

During the last two weeks I have visited over 20 care homes in England, meeting and talking to residents as part of a project which tries to provide an alternative to plonking people down in front of a television. The aim is to entertain, engage and stimulate.

I should say straight away that I am not a healthcare professional, just an ordinary member of the public who stumbled into this work a couple of years ago more or less by accident.

Here are some reflections on an experience which is one of the most emotionally charged things I have ever done. It can be depressing, shocking and frustrating, but also profoundly moving and sometimes a pure delight.

The Homes

Driving from Wales to the Home Counties of England provides graphic proof that Britain is a very unequal society. The flash cars and top of the range 4x4s, the chocolate box villages, the numerous private schools and designer gastro village pubs where a main course will set you back at least £18 all tell their own story.

The range of homes available in these prosperous parts of England is truly staggering. Some are like luxury hotels; a few resemble comfortable and pleasant private homes that just happen to be full of elderly people; others are more like dumping grounds.

Care homes are big business, and even the poorer ones often boast huge new extensions tacked on to what were once large Victorian villas.

At the top end the luxury "hotels" are run by large companies, including American chains. Some of them have a strangely soulless feel. Next come the homes run by charities. They are well maintained and usually much smaller than the "hotels", with a much more homely feel.

The residents in these top end homes are usually frail rather than ill, and overwhelmingly female. A few have separate self-contained wings for dementia sufferers and those with other long-term illnesses.

Below that comes the broad mass of care homes. Some specialise in dementia care, while others have a mix of residents. All of those visited are privately owned, either by chains, charities or individuals.

Standards vary. Some are clearly well-resourced, clean and bright. Some, not many, were noticeably shabby and filled with a pervading stench. Profit margins rather than care seemed to be the priority in a few cases, with absentee proprietors who visit just once or twice a month, according to the staff.

The project I am involved with makes a small charge for its services, and comes under the activities budgets of the homes. Some have much bigger budgets than others, and for some of the small privately run homes, the provision of activities is almost certainly a box ticking exercise to keep the inspectors happy.

Activities can take many different forms, and they should be regarded as a core part of any home's services because they are about the mental well-being of the residents. The alternative to activities is to plonk residents in a lounge in front of the Jeremy Kyle Show.

Anyone looking for a home for an elderly parent faces a difficult choice, with many questions to be answered. High up on the list should be a demand to meet the owner of any private home and questions about the activities on offer and the budget available for them.

The Staff

While the residents of the homes visited are white (I did not see a single black or brown face in any of the homes), the staff are much more diverse. White British certainly make up a large proportion, but Filipinos, Russians, Bulgarians, Poles and other nationalities are all strongly represented. Those earning more than the national minimum wage can count themselves lucky.

Although the staff had more than enough on their hands coping with the residents, I found that if I was dealing with non-British staff they would always take time to ask if I wanted something to drink. It was hot outside, and sometimes even hotter inside the homes. This was not the case when the staff were British.

I quickly learned to take in a bottle of water.

Caring for the elderly is physically and mentally hard. Caring for dementia sufferers is especially challenging. A few of the staff I saw were under a great deal of pressure because of staffing shortages, and one or two of the younger staff in some homes were clearly frustrated when dealing with some of their more difficult charges, but overwhelmingly the staff I saw were caring and gentle.

In one home I came across an elderly lady wandering the corridors alone just as I was about to leave. She left a trail of diarrhoea in her wake. I told a young male Filipino nurse, who gently guided her to a bathroom to begin cleaning her up. The woman became hysterical, and the awful screaming and shrieking could be heard from the street while the nurse tried to calm her.

Another home with a vast open plan lounge and entrance hall was possibly the most depressing place I visited, although the staff were doing their best under what were clearly very difficult circumstances. About half a dozen confused residents stood by the front door trying to get out, asking who had got the key.

In another (up-market) home the receptionist was talking to a distraught family member following the death of an elderly resident.

"You visited X every single day and did your best for her", the receptionist said. "You can be proud of that. A good many of the residents here never get a single visitor".

For most of us the residents of these homes and the people who work in them are out of sight and out of mind.

Talking to the Elderly

It is not all misery and gloom. Talking to the elderly can be enormously rewarding. It can teach you a lot about life in general, and people are more than happy to pass on their knowledge and experience. I certainly learned a lot.

More important than this however is that a short visit can brighten up people's lives and punctuate an otherwise featureless day.

Talking to the frail but elderly is easy and often interesting, but communicating with dementia sufferers is especially rewarding. You never know what to expect. Sometimes it can be tough going, but more often than not you can get through.

Last year I met a lady in the advanced stages of dementia. She could no longer speak and looked like a concentration camp survivor. She sat making a ceaseless stream of noise: golagolagolagolagola. She showed anxiety by turning up the volume: GOLAGOLGOLA. At some point I played a piece of classical music and the noise stopped. As soon as the music ended, back came the noise.

I heard that she died a couple of weeks later.

While I was driving across England on my way to the first assignment on a Sunday afternoon, Radio 4 broadcast a programme in which a woman spoke about her experiences of communicating with her mother who suffers from dementia.

She has learned to take in simple props, such as photos or small everyday items, such as clothes pegs. The old-fashioned wooden clothes pegs brought back memories of household chores and doing the weekly wash in the days before automatic washing machines and tumble dryers.

The point is to think about what you are going to talk about before going in, and to do a little preparation.

In my case the subject was the seaside and summer holidays. The preparation involved putting together some pictures of popular seaside resorts, donkey rides, fish and chips, Punch and Judy and sandcastles. I also downloaded a few old songs that had some sort of connection with the sea: Vera Lynn and The White Cliffs of Dover, Cliff Richard singing Summer Holiday, George Formby and his Little Stick of Blackpool Rock. That sort of thing.

When talking to dementia sufferers, a few key things to remember are:
  • Steer clear of anything likely to evoke painful memories. Death, wars and illness are out.
  • Keep it simple, but avoid talking down to people.
  • If you are showing images, make sure they are simple and clear. Avoid pictures and film clips with lots of complex imagery and fast action.
  • If you are showing something to someone on a tablet or a laptop, try time lapse photography (e.g. a flower opening), individual birds or animals (birds work especially well), or songs. Sometimes poems or rhymes learned by heart at school years ago can produce a great response.
  • Try to avoid direct questions wherever possible. Remember that this is not a test. For example, if you have a picture of a robin, say something like "Look, here's a robin." Talk about the picture, and then try reciting that old rhyme "The North Wind doth blow, and we shall have snow..." 
The most rewarding experience I had on the last trip was a visit to a home specialising in dementia care. It was a hot day, and the residents lounge was like a sauna. Ranged around the sides of the large room were about 20 people with various stages of dementia.

One old lady kept up a constant stream of "please, please, please", and this was clearly getting on the nerves of some of the others. "For God's sake, shut up!" some of them shouted. Others just dozed away quietly. The TV was blaring away with nobody watching, and there was an atmosphere of tension in the air.

Things changed as my spiel got underway. We sang a couple of songs, and started talking about family holidays. Who's been to Southend? Who likes jellied eels? Who's been to Butlins? Who's been to Cornwall?

All of these questions produced a response, and people started offering up their memories of family holidays. One remembered how she had once won a beauty contest at Butlins.

We sang along to Vera Lynn and The White Cliffs of Dover. Eyes lit up.

A picture of ice cream in a cone. Who likes ice cream? Everybody. Who likes chocolate ice cream?  "I like strawberry ice cream", said one old lady.

Mrs "Please, please, please" produced a lovely smile and stopped saying please. Another very sweet and incredibly thin old lady looked at a picture of some jellied eels and called out, "A shilling a bowl, a shilling a bowl".

Someone else recited a poem about fish and chips, and we all clapped and laughed.

The show came to an end, and several old ladies came up to me to say thank you. "That was lovely, dear. Please come back. When are you coming back?"

One took my hand and thanked me for bringing back memories of happy days. She had tears in her eyes, and so did I.

I really wish I could go back again soon.


Anonymous said...

Such a moving item. Reminds me of an experience in my family when my daughter was traveling in South America. She passed through Trefelin (Laurie Lee) style with her violin. She was asked to join in an informal concert in Ysgol yr Andes. After the concert she was asked to visit an elderly lady in the town who was suffering from memory loss. Out came the fiddle and Calon lan and many other hymns filled the room. I understand there was a bit of the PG tips advert when the monkeys move the piano - hey dad the piano's on my foot - you hum it son and I'll play it. One photo of the teenager and the old lady captured the joy for both of them.

Anonymous said...

Fascinating and enlightening. Thanks

Emlyn Uwch Cych said...

Diolch am hyn, Cneifiwr. Standards of care really do vary even in West Wales, but the palatial care homes of England are few and far between here.

When I am old and weary, and my fed-up children have chucked me in the homes, will there be someone like you to do sing-along-a Dafydd Iwan or Bryn Fôn?

It's a serious question. In our part of rural Wales, the vast majority of residential and nursing home residents are Welsh speakers, but any entertainment provided (including the ubiquitous lounge TV) tends to be in English.

Keep up the good work.

Cneifiwr said...

I can do a rousing rendition of Cyfri'r geifr, Emlyn Uwch Cych.

You are absolutely right about the language issue. Dementia sufferers tend to lose their second language first.

Beti George has done a lot to raise awareness of this, and the NHS has a really good initiative called Mwy na Geiriau. Some of their films are really moving:

I am hoping to organise some sessions locally.

Owen said...

An outstanding first-hand account of something that's going to be increasingly important in the debates we have ahead surrounding care for the elderly.

Illnesses like dementia are very complicated, and it's always read as though they're "stuck in time", which I suppose would be absolutely terrifying. So services like those you describe are no doubt a great comfort to them as evident from your account.

towy71 said...

Thank you Cneifiwr
Another excellent article, it is some time since I had anybody that I know in a care home but luckily while they were there they were well cared for and mostly happy

Anonymous said...

God bless you Cneifiwr! Thank you for putting the care back into "healthcare."

You say you are "not a healthcare professional" yet it is evident from what you have said that you met the psychosocial needs of a vulnerable group of people. Testament that qualifications and training is no substitute for people skills, patience, care and compassion. The former can be learnt and developed whilst the latter is inherent.

Jonathan said...

A thought provoking blog. It brought back thoughts of 40 odd years ago when our school 6th form did a concert for the local old folks' home. A parent suggested that we do a Flanagan and Allen piece. I'd never heard of them, but we dug out a record and 6 of us sang 3 of their hits "Run Rabbit Run", "Don't Wake Me 'Cos I'm Dreaming" and "Shine On Harvest Moon". We dressed up in fur coats and straw boaters (one borrowed from the butcher's window). I couldn't believe how well our lame impersonations went down. We had requests to go "on tour" of other homes, which we happily acceded to. I'd never heard of any of these songs, but we barely had to start singing before they all joined in. So gratifying and they loved it.

Roger watts said...

A huge - and growing - issue. And your journey brought back memories. Two points struck me. Particularly but not exclusively in urban areas England is full of homes which are depressing in the extreme. One of the most comfortable and best equipped I came across is a local authority home in mid Wales. Second, there are special techniques and training for people looking after elderly with dementia which I came across in a small chain of homes on the Isle of Wight. It transforms their lives.

gaynor said...

Difyr iawn a rhwybeth sydd wedi bod ar fy meddwl lot ers treulio 5 mis yn gweithio mewn cegin cartref henoed. for 5 months this year i worked in a private run home, with a special dementia unit. Most of the residents suffered from various stages of dementia along with people who had been moved from a local authority home which had been shut before Xmas- they were more on the ball. The care was great and most of the girls woring there were welsh speakers.
The owneres were extremely proud off their 5 star new unit - lovely bedrooms, corodinated soft furnishings and ... wifi. considering that people with dementia cannot even read the Western mail, what use is wifi to them... none whatsoever but the owner can charge their families more money probably.
They were always short staffed and the quality of the food was pretty bad and boring. What got my goat was the fact that the poor buggers were bored stiff and as we all know plonked in front o f the telly and left to doze all day as the carers did not have time to entertain, nurture or stimulate. None of these people are treated as individuals, or ar any steps taken to try and furnish them with activites apart for the odd karoke singer/elvis impersonator. I really enjoyed working with the old people and depsite their different stages of dementia, you can always stimulate and engage them in a conversation if you only had the time to do so and make their day a little better.And when you managed to do this it felt great! Just imagine how long their days is...everlasting.

Anonymous said...

The very point I have been trying to make for a long time now. Get rid of many of the pen pushers at middle management and at senior level, and with the money saved, employ more care staff. Then they will have time to engage with users of the service and provide quality care. Far too many managers within the social care structure at the moment.

Anonymous said...

Yes I agree, and costing the tax payers thousands of pounds. For what? Don't need them!