More than two thirds of people in the UK with a Down Syndrome diagnosis will develop Alzheimer’s disease by the age of 60. However, despite such significant numbers of people being affected, the different symptoms experienced by those with Down Syndrome are not as widely known, leading to delayed diagnosis, and more importantly delayed support.
This September marks World Alzheimer’s Month, with the theme ‘Know dementia, know Alzheimer’s’ focusing on post-diagnosis support. The symptoms of Alzheimer’s in those with Down Syndrome can manifest as deteriorating mobility, reduced interest in socialising and not wanting to do usual activities, which differ from the commonly recognised symptom of memory loss.
Leading provider of care and support services, National Care Group has trained its colleagues to have a cross diagnosis awareness, ensuring they can spot the signs of additional needs the people they support might have. In the case of Graham, who is a 56-year-old resident at a National Care Group service in Norfolk, this knowledge was vital to his support plan.
Rachel Marriott, a registered manager at National Care Group, said: “Within our service, we’ve supported Graham in managing his Down Syndrome for nine years. In late 2021 our team noticed he’d lost his passion for activities he usually enjoyed and was becoming more withdrawn. This, paired with his decreased mobility, led to a diagnosis of early onset dementia.
“Being educated in the correlation between Down Syndrome and Alzheimer’s, and the key signs, has meant we can put in place a support action plan. This includes prescribing the right medications to ensure Graham continues to reach his potential at our service.”
Since developing early onset dementia, Graham has been supported to follow his interests, enjoy socialising with other people at the service, and building a strong relationship with his support worker, Hannah Overland.
Hannah said: “We’re so proud of Graham’s progress and how the team has adapted the support with his evolving needs. It’s so important that we constantly reevaluate what support people may need and ensure we’re flexible so that they continue to thrive. Graham is a prime example of how a few small but significant changes have had such an impact.”
A lifelong Disney fan, Graham’s bedroom at the service was redecorated last year with Graham involved throughout the entire design process. It now includes some of his favourite characters including Minnie Mouse and Goofy. Day to day he still enjoys shopping, walking on the beach and learning how to cook, all with the support of the National Care Group team.
James Allen, chief executive of National Care Group, said: “Alzheimer’s is a disease that almost two-thirds of people with Down Syndrome will experience, and knowing how to identify potential symptoms means we can act quickly and effectively in managing the impacts for the people we support.
“Our values as a business are rooted in providing person-centred support. We wanted to highlight Graham’s story as it exemplifies how well-trained and passionate colleagues are the key to ensuring people have the support they need, for such important yet unknown conditions as early onset dementia.”
For more information, visit https://nationalcaregroup.com/.
