Jean-Marc is the quintessential Frenchman. Lounging in a chair drinking very strong dark coffee, he smiles as his partner of 18 years, Alexis, recalls how he wooed her at a Christmas disco with his handsome looks, French accent and tales of his culinary skills.
Fit, active – he plays golf once a week – and in his mid-sixties he is not, however, what you might typically expect from someone with a diagnosis of dementia. Jean-Marc was diagnosed with early onset dementia when he was 64. While most people think of dementia as a condition that affects only older people, Jean-Marc has been told he has probably had the condition since he was 61.
He previously owned his own restaurant and was still working as a chef when he begun to find familiar tasks like stock taking and learning new menu choices more difficult. At the same time Alexis had noticed a difference in his behaviour at home.
“I started keeping a diary of things that had been going on in the house. I knew there was something wrong. Keys were a big thing. He used to lose his keys, and mine. He’d have mine somewhere and we’d have to find them again. It was quite stressful. He couldn’t get into the garden hut. I came in one day and he had a handsaw trying to saw off the padlock. I asked, ‘What are you doing, Jean?’ And he said, ‘I can’t get in. My keys are inside.’ They were in his pocket all the time.”
Jean-Marc can’t recall much of the period leading up to his diagnosis so Alexis continues to fill in the gaps. “We went to the doctor and he had done a wee dementia test, which is four questions on a sheet, and he said, ‘No, he’s absolutely fine. Nothing is wrong.’”
Unconvinced, six weeks later Alexis and Jean- Marc returned to the doctor and this time she brought with her the diary in which she had been fastidiously noting any unusual behaviour at home. “I’m not a wilting willow of a person. I’m quite a strong person. I went in and I wasn’t wanting any waffle. I just said, ‘Can you read that, that is what has been going on.’ When he read that he said, ‘Oh, we do have a problem.’”
Jean-Marc was referred to a consultant in Edinburgh where he underwent more tests. “She gave him an address to remember and I remember she asked him what the date was and he said, ‘It is 1989’ and some random month. She said, ‘No, can you not remember?’ He couldn’t remember what the date was and that was when I was sitting going, ‘Oh!’”
What the consultant said next turned their lives upside down. “She said we’ll have to get him in for an MRI scan to see what is going on up there, but as far as I’m concerned I’m almost certain that he has got Alzheimer’s.” Alexis and Jean-Marc left the hospital “shellshocked”.
“I felt she shouldn’t have said the diagnosis until she had had the scan then we might have been a bit more prepared but we weren’t prepared for that. We came out of there and we were crying. We went home and we cried and we cried and we cried. The fact that she let us leave there without any pamphlets, without any help, without any contact numbers just to phone…”
Waiting to have the diagnosis formally confirmed is a period Alexis describes as “horrendous” and one she says she will never forget. “In between that time we were just wrecks. We were just retiring. We were just going to start our retirement and it was just absolutely awful.”
She found the number for Alzheimer’s Scotland’s helpline and they in turn put her in touch with their Lothian Early Onset Support Service. The service is for individuals who have been diagnosed with dementia up to and including the age of 65, and offers information, advice, and support for individuals and their carers throughout their dementia journey, as well as activities and a monthly ‘Oasis’ social café.
Alexis attended one of the cafes on her own initially and says it was an “uplifting” experience. “The carers went up the stairs and everybody chatted and asked for my story. Of course I was really upset so when we went down to have our bowl of soup these three girls, I call them the Golden Girls, they just took me to the toilets and gave me a hug and they said, ‘Alexis, we know exactly what you are going through because we’ve been there’.
“I don’t know where I would have been without that,” she confides. “I had to get counselling but without Oasis initially and the early onset service I really don’t know if I would just have completely broken down. That is what stopped me.”
The service’s ethos is about building relationships, empowering people, and enabling them to maximise their skills, explains service manager Alan Midwinter. “It is about trying to keep people as engaged in the community and stimulating activities, enabling people to use the skills that they have and maximise those skills to maintain life at the highest end of their ability.”
A conference in Glasgow earlier this month sought to turn the spotlight on this small, but important issue and impress the need for clear referral and diagnostic routes, age-appropriate care settings, and post-diagnostic support for individuals, and also their carers.
Dr Gary Stevenson, a consultant psychiatrist with NHS Fife established the annual ‘Dementia in Younger Adults’ conference five years ago in response to what he perceived to be a need for a Scottish forum to raise these points and bring interested individuals together to exchange ideas.
“Although it is a relatively small problem, it is very important because often people don’t fit neatly into services, particularly older adult services or younger adult services,” Stevenson says.
Around 200 people a year in Scotland are thought to develop dementia before the age of 65, and at any one time between 1500-1800 people in Scotland aged under 65 are likely to have dementia. This may only represent a small percentage of the estimated 82,000 people with dementia in Scotland, but these smaller numbers actually increase the complexity of diagnosis, Dr Cameron Stark, consultant in public health medicine, NHS Highland, explained in his presentation to the conference.
“As dementia is uncommon in younger people, health and social care practitioners are less aware of routes to care, and there can be delays in referral, and multiple routes within services in order to obtain care,” Stark summarised.
While many of the problems experienced are similar regardless of age, Stark pointed out that the financial impact of a diagnosis for someone of working age and its effect on a partner and dependant children can be “substantial”. This, combined with long duration of care and difficulty accessing specialised support, can have a significant impact on caregivers with one study reporting that two thirds indicated their emotional wellbeing as ‘poor’ or ‘very poor’.
Many will also be caught off-guard by a diagnosis of early onset dementia. “Most people who have an early onset dementia don’t have a family histFmidwinterory,” Stark said. “Family history is a risk, but it is actually identifiable in a minority of people and that, I think, has complications in terms of care because for most people, this is entirely out of the blue. They haven’t got a family history. They haven’t thought about it.”
The Scottish Government says it is taking strategic action through Scotland’s National Dementia Strategy to help local services make “real and measurable” improvements for all people with dementia, regardless of their age; and their families and carers. Similarly, the dementia standards, which are intended to empower people with dementia and their carers in getting the right care, explicitly state that they apply to everyone with a diagnosis of dementia, regardless of their age, a spokesperson adds.
“The standards are clear that, among other things, all people with a dementia diagnosis, at whatever age, have the right to a timely diagnosis; to personalised care (which will include an understanding of the particular issues for people with early onset dementia); and the right to the range of appropriate care, treatment and support,” a Scottish Government spokesperson said.
Promoting Excellence, the dementia skills framework, has been backed by over £500,000 this year to develop and upskill the dementia workforce and help local services meet the dementia standards. It also includes responding appropriately to those younger people with dementia and their families and carers and aims to contribute to increasing awareness across all health and social care services of the prevalence of early onset dementia and the needs and experiences of this group.
However, gaps remain. “There is clearly the recognition of earlier diagnosis of dementia in general, which is a good thing,” Stevenson says. “But there needs to be an acknowledgement of the particular issues raised for younger adults with dementias, as they fall between current service delivery models. “It would be useful if each of the health boards can identify specific pathways of referral for younger adults presenting with memory issues,” he adds.
There will never be enough services for people with dementia, states Midwinter, who says the service supports around 100 families across Lothians but has waiting lists for all of its activities and support services. However, he says we must endeavour to change the community’s understanding of dementia. “The issue about dementia is every single person’s dementia will show a different character to it, therefore a personalised support is absolutely paramount.”
When I ask Jean-Marc what message he would like to get across, his stripped-back response succinctly and elegantly sums up everything we have been discussing. “I am what I am,” he says with a slow shrug and a smile.
Jean-Marc loves Alexis and speaks with pride and affection about his family. He enjoys competing at golf, ten-pin bowling and wordsearch puzzles with his grandson. He is his own person. He can no longer access all of his memories; but he doesn’t want anyone to forget that.