Down's Syndrome And Dementia | Shine Your Light For Down's Syndrome And Dementia

Down's Syndrome & Dementia

This is my brother, Adrian. Bruv. Bug (a nick-name from an imaginary friend he called Bugas Damenche (Bug sounds more like book). Later, in his very own style, he would introduce himself as handsome, debonair, and sometimes, Bond, James Bond, 007.

As a family we continuously fought for the best services to support Adrian through his life.

I am creating this website:

to honour my brother's memory who died Christmas 2021
to challenge myths and stereotypes still influencing services
to create a platform for siblings and family advocates
to highlight initiatives and positive stories
to raise the profile of real life stories to improve understanding of needs for professionals
to shine a light on the need for a national framework with ability to monitor
To improve services for adults with Down's syndrome in older age.

Mum was a trailblazer. She always wanted the best for Bug. He attended main stream school in the early 1960s! Followed by two younger children. Mum was a single parent with three young children at school. She worked full time to support us. That was 60 years ago!

As they both aged, Mum was increasingly fearful of his future. She was overwhelmed by information from well meaning forums. We researched the links with Alzheimer's, and attended lots of meetings. Most of this expressed fear and negative outcomes, a repeat of when he was born. Adrian's generation was to be the first to have expectations of life beyond 40. Services lagged behind. Local authorities also had a negative view of services they were funding which focused on maintaining independent lifestyles.

The gap Adrian and his age group were falling into became wider. We had to battle for change as he was experiencing it. His life became traumatic to witness. Proactive energy was replaced by crisis management. There was very little impetus for a diagnosis of dementia and I believe this would be so different if there were appropriate services ready to support.

What happens if care teams have a different interpretation of the care act? What happens when appropriate support is not in place? How does this impact him or her at the most difficult time in their life?

I hope these pages will go someway towards a change for the better.

Challenging Myths

In a decade when we rightly and deservedly celebrate the achievements of adults with Down's Syndrome across the world, in sport, in TV, in film, in advertising, in work opportunities, it is especially sad that we are not fulfilling the needs of adults with Down's Syndrome when they are most in need. This generation is the first who are likely to live with dementia, and who face life after the loss of their parents.This generation in their later years and beyond, did not grow up with the public recognition that we now expect. Their world may still have remnants of prejudice if their experience growing up and forming views was from a different era.

Adrian was the heart of our family. He was an artist (internationally awarded). He was fashion conscious, he loved music, he was kind, he was funny. When frustrated, he became sarcastic and grumpy. He could avoid a subject with a turn of the head that was classic Bruv. We all tried to adopt the technique, but no-one came close. He was a fanatic; 'boy bands', favourite detectives (from Kojak to Columbo & later, Bergerac & Barnaby), celebrity and royalty. Our family holidays usually incorporated something or someone he was interested in. He wrote to the Queen, to Princess Diana and to John Nettles. He received two letters from Buckingham Palace and even met John Nettles in Stratford after a live performance. These memories and cards are family treasures.

I was always active in my brother's life. From childhood, I was his skin & blister. We grew up in London and Bruv loved Cockney rhyming slang! I adored him as a child, sometimes taking advantage of his patience with me (dressing us both up in nighties to perform a batman and robin play - of course I was batman despite Adrian towering over me and being more heroic - the joke was always on me). I was even closer to him as a grown up sibling. I can't shine a light for him now, but I can shine it brightly with and for other brothers and sisters.

My brother's life expectancy when he was born was possibly teenage or twenties if we were "lucky" (First myth). Mum was told he would never read or write and possibly not even walk (second, third and fourth myth).

I can tell you he did all of those things and much more. Yet, there was an elephant behind every door that we tried to open for him. That elephant was huge and inflexible at times. Mum became obsessed about surviving Adrian in her later years, so that he would always have someone to battle for the right support, to challenge services to be better. There are many parents in the same boat. This doesn't reflect the world we live in today, does it? Let's shine a light on those families and hear their voices, read their real life stories... to challenge us to be better. Create appropriate plans for ageing. Combat some health issues that the rest of us already have a right to by check-ups, training and monitoring. Let's shine a light on a solid pathway so that this generation and others to come, are no longer disregarded.

We can influence positive change. Life expectancy is still lower due to a number of factors, partly hidden or impacted by recent events. Services are not catching up with the reality of adults like my brother, Adrian, who embraced life up to his 60s. Adrian died in December, 2021. Just before Christmas, he was 65. It was weeks before he would have drawn a pension. He looked forward to retirement from the age of 30! The last 2 years of his life was traumatic for us as a family. I squeezed my depleted energy between battles for his care and supporting our Mum in declining health too. This should not be minimised as an 'expectation' for families who are already giving much more than families without the huge responsibilities for a family member with learning disabilities. Support should be real and accessible.

Bruv's health declined rapidly when the services he had relied upon could not support his needs anymore. The options were so limited that choice seemed to be hospital or home. Services for independent living are not set up for such quick and drastic change. He came home to be with us while best interest meetings went on around him and we explored all options under great strain. He needed a care setting that could anticipate his needs although his medical needs at the time were minimal, if they were not included in his care, he would be at risk. He was labelled "too well for hospital" but "not well enough for residential support with access to nursing". He was refusing solid food. Our only option was to cover all his nutritional needs in liquid form. He was too young for nursing homes that are registered from the ages of 65.

Families have a wealth of experience. We know better support is needed. Family stories highlight the patterns that are being repeated. They identify gaps in services and show where change is needed. Medication is available in one area and not in another. Therapies could be helpful and yet are rarely considered. Plans fall by the wayside and often emergency changes to care happen in crisis. Services need to straddle both systems of social care and NHS. When systems don't link, support fails.

Let's change the story.

Family reality

Mum also had dementia when Adrian was very ill. Her focus was still strong, she regularly asked "...what happen's to Adrian when I die?"

This space exists because I believe Adrian's life story matters. It matters to me and family, of course, but on a wider platform it should matter to those who are working in service delivery now, and in the future. Families are integral in creating support plans for future services, just as Adrian or any of his friends should be at the centre of those plans to impose meaning and dignity to inform a way forward. To ensure quality of life. Bringing families and experiences together here, will help us shape services in a positive way. Data and research is helpful for a broad overview, but less helpful when debating what real life support could look like.

Adrian, 'Bug', was 65 when he died. His death certificate recorded "Alzheimer's in Down's syndrome". So why is there little evidence of clear support for this group of adults?

Finally, my family were totally committed to Adrian's needs. I am proud of the change we made happen in his life. However, this should not be allowed to put such strain on families who may face many of their own challenges. How do we ensure a smooth transition for caring for adults with learning disabilities and dementia? How do we support plans for end-of-life care when the experience is most traumatic for and minimise the trauma for families? Research already shows that adults with Down's syndrome are at a significantly higher risk of Alzheimer's. Links have been known for some time. So, why are we not planning ahead?

Bringing families together here, I aim to raise public awareness about some of the most pressing issues facing today’s ageing adults with Down's syndrome and Dementia, most typically Alzheimer's. Please join us by sharing real stories. Life stories to shape and inform the future of services for care in this much needed area.

MY STORY

My bruv Adrian was displaying difficulties with his understanding of the world around him from before 2014, but noticing differences were complex. By the time he was 58, those minor obsessions became distressing for him, and for those supporting him. I became a central part of his support system as Mum aged and technology (emails took over from letters and phone calls) became too much for her. My aim is to share his, and my, journey with other families and professionals to explore a better way to support men and women like Bruv. A supportive plan could make the world of difference by simply reducing crisis intervention to a more proactive approach. My bruv was a man with Down's syndrome AND Alzheimer's, not one or the other, but both. He did not stop having a learning disability when Alzheimer's crept in. Yet services tend to focus on one or the other. Most funding authorities purchase a service that rightly prioritises independence, but when support stops meeting the changing needs of an adult like my Bruv, it is a slow, mountain climb to access appropriate services locally. With meaningful discussions, we can change this. With a collective voice, we can demonstrate where those services need to change. My early campaigns will be to focus on changes to services, and ensuring plans for a smooth transition.

Is this right...? or Is this a Myth?

Dementia is what he has now. It is part of his learning disabilities No, dementia is a progressive disease.
Hasn't he done well getting to 45, 55, 60? Has he got a DNR in place? We need to put this on his records? While this forms part of a serious medical discussion as part of end-of-life care, my experience has been that this question should be challenged if prioritised in a hospital setting or during assessment of treatment. It is a separate issue.
He has become so naughty lately. He is loud and disruptive. No. Simply, No. Childlike comparisons to behaviours are unhelpful. Behaviours or patterns of behaviour are really good indicators of change for someone. This should direct support teams to have meaningful discussions and signposting towards professional advice and/or services. Particularly useful is a team known as Community Team for Adults with Learning Disabilities This team will meet or exist as a group with multiple skills including learning disability nursing, mental health and psychiatry. They are invaluable and should be re-created in every county.
He is becoming lazy and won't join in anymore. There are indications that physiological change during this traumatic period, create fear. A fear of falling. A fear of what was familiar. There could also be an imbalance issue that is more physical or relating to hearing/ears or even early hallucination activity.
He likes to be left alone, and doesn't really need to join his friends much anymore. Absolutely NOT right. It was my main focus when Bruv was finally moved into nursing care when 'independent' support became too risky for him. The lack of transitional plans shocked me. I think I aged 10 years in as many weeks just trying to maintain contact for him and friends. Not just occasional contact, but valuable positive interactions. What on earth must other friends be thinking when a live-in friend suddenly leaves and is not seen again? Would this create avoidable fear of the unknown. It is ABSOLUTELY NOT right and unacceptable. We need to look at sharing responsibilities and partnership working. Not ticking boxes. Real parternship working towards a shared aim. Funding needs to facilitate this.
He's getting fussy with his food now. This is a good time to have support from a nutritionist. I witnessed my brother, who adored food, gradually and erratically stop eating solids and certain food colours. This became nutritionally limiting so quickly that it was shocking. He was also at risk of becoming isolated from family and friend celebrations that centres around food.
Depression. 'We don't want him to become addicted to unnecessary drugs.' This should never be a care givers response, but should be addressed by medical professionals in attendance, and review dates set regularly to ensure all options are considered that improve mental health and stabilise mood to maximise quality of life.