Developing Dementia

Ten signs of dementia and ten questions you could ask yourself

Anyone might develop dementia.
Here are ten questions you could ask yourself:
 
1. – Are the changes you have observed in the person new?
2. – How long has the person had the symptoms?
3. – Could they normally manage their household and self-care before?
4. – Are their normal personal routines still in place?
5. – Are they forgetting appointments – or medications?
6. – Are they able to make and keep work appointments or social arrangements?
7. – Do they ever get confused as to their whereabouts?
8. – Have you noticed any differences in their dress or behaviour?
9. – Do they seem to be less motivated?
10. – Does the person seem distracted, or vague? 
 
If you suspect that the person has some cognitive impairment that might lead to dementia, you might consider:
 
• An MMSE and/or additional cognitive tests
• Reviewing the person’s medication
• Considering referring the person for neuropsychological testing or a geriatric assessment
• Assess other reversible causes/factors of memory loss: CMP, CBC, thyroid function tests, vitamin B12 & folate
• Asking the doctor to arrange an MRI scan.
 
Thank you to Unsplash and Evan-Dennis for the image.

Chatterbox groups

Chatterbox Groups

Being listened to matters. People living in care homes need meaningful conversation every much as do we who live independently – it’s part of our wellbeing.
 
In a care setting, if a person’s dementia is advanced, staff may struggle to engage with them. Few carers have any training in meaningful conversation – added to which, their ages, life experiences and possibly social cultures may be very different. 
 
According to a study by Washington University in St. Louis and the University of Arizona, outgoing, gregarious people who have deep, meaningful conversations also have happier lives. People who spend less time alone and more time talking with others have a greater sense of personal well-being, suggests the study, published in the journal of the Association for Psychological Science. Co-author Simine Vazire PhD, assistant Professor of Psychology in Arts & Sciences at Washington University says, “having more conversation appears to be associated with a greater sense of happiness among the people in the study.” The happiest were those who engaged often in more meaningful and substantive discussions, as opposed to idle chit-chat and small talk. 
 
This finding is also true of people living with dementia. When we value people’s histories, co-incidentally, we help give them a kind of meaningful future. If we fail to listen to their rich life experiences, we fail to value them. Stories of learning how to make do, mend and keep your chin up in challenging times are as relevant now as they ever were. It can be oddly comforting for us to hear the experiences of a person who has ‘come through’ with a longer perspective on life.
 
Since 2015, it’s been a privilege to facilitate regular conversation groups with residents at a London care home, based on the principles of REAL Communication (Reminiscence, Empathic engagement, Active listening and Life story) and the Chatterbox cards. The sessions last for about an hour each and take place twice a month. Four or five residents with advanced dementia attend the first group and about ten people with cognitive impairment but whose communication skills are still relatively intact come along to the second one. 

A four-month trial proved so successful that they have continued ever since. The stories people have shared have helped us to map their life stories in a way that a more formal assessment simply cannot. Our thoughts, experiences and memories rarely follow a chronological path. In capturing them as they are sprinkled throughout the sessions, we have been able to build a more complete – and interesting picture of each person. This has then been translated into more focussed care.

Chatterbox Groups

Since 2015, it’s been a privilege to facilitate regular conversation groups with residents at a London care home, based on the principles of REAL Communication (Reminiscence, Empathic engagement, Active listening and Life story) and the Chatterbox cards. The sessions last for about an hour each and take place twice a month. Four or five residents with advanced dementia attend the first group and about ten people with cognitive impairment but whose communication skills are still relatively intact come along to the second one. 


A four-month trial proved so successful that they have continued ever since. The stories people have shared have helped us to map their life stories in a way that a more formal assessment simply cannot. Our thoughts, experiences and memories rarely follow a chronological path. In capturing them as they are sprinkled throughout the sessions, we have been able to build a more complete – and interesting picture of each person. This has then been translated into more focussed care.

A wedding dress to remember

Meaningful conversation

Meaningful conversation is what many, if not most residents in care homes ache for. I am lucky to have facilitated a regular fortnightly conversation group of people in their 80s and 90s, living with dementia at one care home for nearly ten years. A handful of us sit together in a small group on our own in the lounge.

Some might advise against asking questions of people living with advanced dementia and I have some sympathy with this. People with dementia can find questions debilitating. So often, they refer to the recent past – or future, which negatively challenges a person’s damaged short-term memory. Questions like “how was breakfast?”, “what did you do today?” and so on, pretty much guarantee failure. 

My mum had Alzheimer’s disease and vascular dementia. I often found myself intuitively ‘burbling’ at the start of conversations with her, as I have with the many of the lovely older people I’ve known over the last thirty years, whether they have dementia or not. It was my conversations with mum about her long-term memories that prompted me to develop Many Happy Returns cards and the REAL Communication framework.

Burbling and Seeding

Our conversation sessions always begin with settling in. I might talk about a few (positive) things I have on my mind for one reason or other. These may spawn a small selection of ideas that I then ‘seed’ for possible conversation. Once we’ve started, some questions can be helpful; as long as they are about the deep past and help to tap into the person’s long-term experiences, making them the expert.

At one session a few years ago, we were joined by N, a resident I hadn’t met before. Her carer took me aside to explain that N was in her nineties and had advanced dementia. “She might not be able to join in, but we think she might enjoy being with you and listening.” N looked distracted and tired. I wondered whether she would – or could join in, I knew nothing about her, but hoped she might enjoy the experience, nonetheless.

We started as we always do, sharing our names and our state of wellbeing. Seeding a few linked conversational notions for people to consider, I picked the ‘Make Do and Mend’ card from the 1940s set and what it meant to me. 

“I was thinking about sewing baskets today. My mum’s wicker basket sat by her chair in the living room. It was full of colourful ‘Dewhurst Sylko’ reels and darning wool. There was a needle case with ‘Needles’, helpfully printed on the cover in case you’d forgotten… I remember a round shallow re-purposed Pascall Fruit Bonbons tin of pins, with its familiar rattling sound when opened. The lid was stiff and if you weren’t careful it would burst open, spilling pins all over the floor – with my mother frantically shooing the dog away. There was a little pair of scissors shaped like a stork and another, large heavier pair with long blades for cutting-out, as well as saw-toothed, ‘pinking shears’. There was a wooden darning mushroom, often in use… and always a few stray items short of a proper home, like buttons, cards of hooks and eyes and poppers. Sewing by hand… everyone used to do it, didn’t they…?” 

And then, “I expect you all learned to sew and knit, did you? Perhaps it’s a shame we don’t do these things so much now…” 

The Dress

Far from only being able to listen, N was the first to speak. To the astonishment of us all – and the complete disbelief of a few, she said, quite nonchalantly, “I was a seamstress and made Princess Marina’s wedding dress!” “WOW!” I exclaimed, feeling deep admiration and “How fantastic…!” and “Could you possibly tell us about it?”

Not so much a question as a suggestion. I could see and hear that she was really engaged and feeling more confident. A conversation with a person with advanced dementia can be like approaching a sensitive creature in the wild… move too fast and they might run away frightened, move too slowly and they might freeze. If we moved cautiously, might she share more?
N continued slowly, completely absorbed in her memory, “It was very simple and elegant, with a 17-foot train… quite understated really…” (see picture) she continued, with her own masterful understatement.

“Were you the only person to make it or was there a team?” I asked, working hard to keep a lid on my excitement. Long-forgotten fashion industry memories of my own popped up uninvited.
“Oh yes”, she continued, “there were five of us. There were two wedding dresses made, from specially woven white silk and real silver thread. It was fine, but very heavy.”
She went on to tell us about her job, the dress, its design by the couturier Molyneux; how an identical second dress was made in Paris by Russian refugees, “so that the unworn one could be exhibited at Buckingham Palace,” describing her team’s disappointment that in the end, it was the French dress that Princess Marina wore on the day – 29th November 1934, because of her special relationship with the people who made it. 

N described in detail how the seamstresses sewed the hem in tiny sections, gesticulating the movement of the needle, thread and fabric, “we’d caste on, sew five stitches, and then caste off again,” so that if the heel of the bride’s shoe accidentally caught in it, “they were very high”, the whole hem wouldn’t unravel. N might have advanced dementia, but who would have known?

Stretching the conversation


Initially, there was general disbelief from one of our group, “don’t be ridiculous, of course she didn’t do that,” said another of our group dismissively, forgetting her usual good manners. “Well, it’s such an interesting story – perhaps we can talk about wedding dresses some more?” I replied, walking a bit of a tightrope between being tactful and not disagreeing.
And of course, as the conversation developed, everyone in the group joined in, sharing distant memories of their own wedding outfits and wedding bouquets and stories of more recent Royals, of Russian refugees and Princess Marina’s relationship with them, of jobs abroad, of late autumn weddings. 

Finally, N told us that the English-made dress was the only one to survive, as the other was destroyed by a fire at Princess Marina’s home. 

Ours was a happy group that day, as so often – the smiles, laughter and engagement proved that. “Thank you so much”, said one of the participants, afterwards, “I love these sessions”, “well thank YOU”, I replied, “it’s always a pleasure for me, too.” I really meant it.

Communication Masterclass

On 31 October SCIE (Social Care Institute for Excellence) is running another REAL Communication workshop – an open course for dementia care practitioners that focuses on how to communicate more effectively with a person living with dementia. The interactive workshop includes exercises, games, discussion and reflection in an open studio environment. The workshop techniques are designed to make it easier for professional carers to positively contribute to the quality of life of those they care for. 

The REAL framework is based on evidence I gathered over a decade working with people living with dementia and their carers, that showed that reminiscence, empathic engagement, active listening and life story are key to the wellbeing of any older person living with dementia. When accompanied by the Senses Framework, everyone’s lives improve. You can read more about it here

Our favourite toys 20:

Smiley and Mrs Pussy

Smiley is seen here with Mrs Pussy after more than 40 years of love, tears and secrets. He’s wearing the jumper and trousers of my mother’s teddy, “Edward Bear” and was a present from my Granny, bought with Green Shield stamps (my grandparents were very hard up) for my sixth Christmas present.

Mrs Pussy, although a better class of teddy, didn’t hold the same appeal, though she has washed her skirt for the photo and the pair of them have planned their retirement by the sea.

Many thanks to Fi Howard, textile designer, www.fionahoward.com

I loved him more than anything else and would have risked my life for him. He was there for me when I was homesick away at school, when I was ill, needed someone to talk to, or just someone to snuggle up to every night.