Mariel's story: Living with young on-set dementia
Mariel Kirton’s father was diagnosed with Alzheimer’s 12 years ago. She has used her experience to create a platform to tackle the stigma around dementia and help others who are going through something similar.
Ray Kirton was only 52 when he was diagnosed with Alzheimer’s. Mariel, who now works at Waltham Forest Council helping to prevent Violence Against Women and Girls, and her sisters were all in their teens at the time.
Mariel reflected, “Dad was the life and soul of the party. He was always such a happy person who everyone wanted to be around. He still has a glint in his eye and the kindest smile.”
For two years before his diagnosis, Ray’s family detected some seemingly minor changes in his behaviour, such as making uncharacteristic mistakes at work.
Initially, he was misdiagnosed with depression as doctors failed to link his symptoms with dementia due to his young age. But when he continued displaying dementia symptoms, including losing his train of thought, the family took him back to the doctors.
Different types of dementia manifest in different ways, but it is important to identify symptoms at an early stage. You can find more information on the dementia help page on the Waltham Forest website and visit a GP if you have any concerns.
The immediate aftermath of a diagnosis can be an uncertain time. The Alzheimer’s Society has a Dementia Advisor service in Waltham Forest, where staff offer support to understand key information. Find out more on the Dementia Road Map website.
The Waltham Forest Dementia Hub in Leyton can also provide information and advice.
Ray stopped working, so Mariel’s mother had to return to work. As a result, the daughters took on more caring roles as Ray’s independence continued to diminish. This included losing his driving licence, which made living in rural Northumberland more difficult for the family.
Ray’s wife is now his full-time carer after they relocated to the Midlands. Their three daughters all live in London but each spends four days a month at the family home helping to care for Ray and providing some respite for their mother.
Caring for a loved one who is living with dementia can be emotionally and physically draining. At the Dementia Hub, we host carers’ drop-in sessions every third Wednesday of the month from midday to 1pm. There is also a carers’ café from 1pm to 3pm on the same day, where carers can wind down and have informal chats over a hot drink.
Carers First provides support for unpaid carers. You can find out more on the Carers First website.
It is becoming increasingly difficult for the family to look after Ray, whose speech is now just a few words. Carers visit Ray in his home and he visits a day centre three times per week.
Mariel said, “Even though it’s difficult to interact with him now, we still enjoy spending time with our dad. I know it sounds silly, but television is a big source of joy for him as he thinks the presenters are in the room with us. Even though he has virtually lost all his speech, he still says ‘lovely’ and tries to sing. We try to keep him active and go out for walks.”
The Intensive Dementia Outreach Service runs stimulating group-based sessions in the Dementia Hub and a unit in Chingford, as well as home visits in some cases. Find out more on the Dementia Road Map website.
Sensory stimulation can improve the emotional wellbeing of those living with dementia. Researchers from UCL visited the Dementia Hub to carry out workshops and explore this subject more. You can find out more about their work by reading the article on the stories page of the Waltham Forest website.
The Council also offers dementia-friendly walks, starting from Leyton Sports Ground, every Tuesday from 11.30am to 12.30pm.
The William Morris Gallery and Vestry House Museum have been accredited as dementia-friendly venues. This means that many of the staff are dementia friends and that dementia-friendly curator tours are available for many of the major exhibitions.
Mariel has channelled her experiences into breaking down dementia stigma and promoting the importance of research with her online Instagram blog. As a young person raising awareness, she’s able to reach many young carers who might be in a similar position, caring for loved ones with little or no recognition.
She said, “I initially started the Instagram page in 2015 for friends and family to keep updated on how he is. But I soon found a community of others who were in a similar position.”
In 2017, Mariel ran a half marathon for Alzheimer’s UK, which led to her becoming a media volunteer for the charity. She featured in this Alzheimer’s UK video where she shares her personal experiences of what it has been like supporting Ray since his diagnosis.
Cllr Louise Mitchell, Cabinet Member for Adult Services at Waltham Forest Council, said, “Mariel’s story is touching and encouraging in equal measure. Despite the situation, she has such a positive outlook on life and wants to help others who might be going through the same thing. We are proud of her as both a local young person and a member of our staff and want to recognise the great work she has done for dementia.
“We are also proud that Waltham Forest has been accredited as a borough working to become dementia friendly. We want to continue providing the best possible support and services for our residents who are living with dementia, as well as their friends, family and carers.”
Visit the Dementia Road Map for all the available dementia services in Waltham Forest.
If you would like to become an Alzheimer’s Society dementia friend, then please contact the Dementia Hub on 0208 558 0647 or email dementia.hub@walthamforest.gov.uk.
The Residents' Panel provides an opportunity for people living with dementia and carers to provide feedback to services on their experiences. It will also offer a place where they give their views on changes to local services. If you would like to participate, then please contact the Dementia Hub on 0208 558 0647 or email dementia.hub@walthamforest.gov.uk.