 Paul Rubenis completed Alzheimer’s Society’s Trek26 event after his dementia diagnosis. A new partnership in Lincolnshire will offer tailored support to residents who have the same type of dementia that actress Pauline Quirke is living with. Alzheimer’s Society together with Lincolnshire Partnership NHS Foundation Trust are piloting a new support service in light of the hundreds of people across the county living with young-onset dementia. An expert dementia adviser at the charity has teamed up with a psychological intervention facilitator from the NHS trust, in a partnership focusing initially in Boston, to give people under the age of 65 with a diagnosis of dementia support at a time in life that can present other issues and challenges. Paul Ruben, 65, was diagnosed with dementia at the age of 58, in a shock discovery that developed following a car accident. The former self-employed property developer in Gainsborough, said: “I first visited the GP to talk about symptoms after I was involved in a car accident. Looking back there were signs leading up to this that I ignored, such as forgetting where I was going in the car or where my next job was. “Thankfully no one was hurt in the car accident but it took that for me to reach out to my GP. I was sent for an MRI scan and I began to think if I had a tumour but when my doctor mentioned shrinkage on the brain and Alzheimer’s, I just thought he had to be wrong as that’s what old people get. “Months of further tests at memory services followed before my official diagnosis of young-onset dementia presenting with Alzheimer’s. It’s one thing to have that diagnosis given to you in your 50s but coupled with the prospect of giving up driving and being unable to get the insurance needed to carry on working in the trades industry, was lifechanging.” Paul is one of more than 70,000 people living with young-onset dementia across the UK. Early symptoms can be hard to recognise or not obvious and may be put down to other factors like stress, mental health conditions or the menopause, leading to a delay in getting a diagnosis and receiving support. Having the right support available is something Paul wants to see more of and welcomes this new service. He said: “If not for Alzheimer’s Society picking up the phone and supporting me in the first six months, I don’t know where I would be now. They helped me to get things in place with my finances and informed me about my diagnosis and other services that could help. “However, some services are better than others and I get frustrated with a lack of understanding and knowledge on young-onset dementia and trying to treat everyone the same. “Dementia doesn’t mean it’s the end. I can still contribute and live well at this stage. In 2023 I completed Alzheimer’s Society’s Trek26 event to help raise money and give something back. It’s really encouraging to see this new service taking a dedicated approach to supporting people with young-onset dementia and listening to our needs. We’re still us, just changing.” Diane Hinchliffe, Alzheimer’s Society Local Services Manager across Lincolnshire, said: “Younger people with dementia may be otherwise quite fit and able during the earlier stages and so find it hard to find support that’s right for them. They may not want to join groups or activities that cater mostly for the needs of older people. “Our jointly run support service is a pilot, which we hope will open up further opportunities of support across Lincolnshire. We aim to showcase the benefits of tailoring services to meet the needs of younger people with dementia. We’ll offer one-to-one support through our expert dementia adviser, helping people to understand what their diagnosis means, cope day-to-day and plan for the future, as well as helping them to connect with other services and people in similar situations locally.” Jacqueline Tyson, Divisional Performance and Resource Lead for the Older People and Frailty Division at Lincolnshire Partnership NHS Foundation Trust, said: “We are delighted to be launching this new pilot support service for individuals with young onset dementia, in partnership with Alzheimer’s Society. This initiative marks a significant step forward in our commitment to provide comprehensive care and support to people living with dementia in our community. “The service is within the Boston Primary Care Network, and Boston has been specifically chosen following an in-depth analysis of population health data which indicates that the area has a higher-than-average number of individuals diagnosed with dementia under the age of 65. The service is also available to friends and family members, recognising the significant role they play in the lives of those with young onset dementia.” For more information about the young-onset support service in Lincolnshire, call the team on 01522 692681 or email lincoln.enquiries@alzheimers.org.uk. Anyone worried about their memory or changes in behaviour should contact their GP. Alzheimer’s Society has an online symptoms checklist that can be downloaded to help support conversations, visit alzheimers.org.uk/checklist |
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