This Dementia Action Week (15-21 May) our Trust is emphasising the importance of an early diagnosis for people with young onset dementia and how new therapies are helping to improve quality of life.
More than 70,000 people in the UK are living with young onset dementia where symptoms occur under the age of 65. Younger people experience similar symptoms to older people with dementia but the impact on their lives is likely to be greater. They are probably still working and have significant financial commitments such as a mortgage and they may also have families to support.
While there is no cure for dementia there are evidenced-based therapies available that can help make a huge difference and help people to lead fulfilling lives. We are one of a handful of NHS Trusts to be offering cognitive rehabilitation alongside occupational therapy to people referred to the Young Onset Dementia service. These therapies are offered following a comprehensive assessment to confirm a diagnosis that includes head scans and blood tests.
Cognitive rehabilitation was originally developed for people living with cognitive impairment as a result of brain injury. It works by identifying the areas of daily life that a person wants to improve and then provides specific strategies and techniques to help achieve realistic goals. The approach also helps to reactivate knowledge and vocabulary. The Young Onset Dementia team will look at where a person is experiencing difficulties, how these issues can be overcome and whether loss of confidence or lack of support is also contributing to the problem. More than 350 referrals are received by the team each year.
Sarah Agnew, Clinical Neuropsychologist at our Trust, said: “Following diagnosis, there are many positive interventions and treatments that can massively improve people’s quality of life. The work we are doing in the area of cognitive rehabilitation is new and exciting and we are seeing some very positive results.”
Mary Champkins, Clinical Lead Young Onset Dementia Team, said: "We have been developing our skills and expertise using cognitive rehabilitation for people with young onset dementia as recommended within the NICE Guidelines 2018. We have been able to measure the positive impact this has had through pre and post intervention MOHOST (Model of Human Occupation Screening Tool) assessments. We are pleased with the outcomes and the positive feedback the team has received from people who use our services."
Marcel Fewins, Specialist Occupational Therapist, Young Onset Dementia Team said: "Over the last four years we have introduced Cognitive Rehabilitation at our Trust alongside the Model of Human Occupations (MOHO). The appeal of Cognitive Rehabilitation is that it gives people the opportunity to achieve manageable goals, with our support, that can significantly improve their quality of life.
More information about Cognitive Rehabilitation and how it is used to support people with Dementia can be found on this website.
Case study: Chris and Val who live in Ewell
Chris was a fireman/station officer for 30 years. He was diagnosed with early onset Alzheimer’s disease in October 2022 at the age of 64. He is supported by his wife, Val.
Chris said: “We have had positive support from the Young Onset Dementia team from the start. They helped me to look at why I wasn’t getting involved in certain activities and gave me simple strategies and techniques that have helped me to have the confidence to get involved again. It’s made a huge difference to my life. I have prompt sheets that remind me what I need to think about if I am going to the gym or playing golf or any other activities that I enjoy. We have a designated safe place in the home for things such as glasses, keys, my phone and that has meant I get a lot less stressed about losing things. Socially, I now know to target quieter areas when I meet people. This might mean positioning myself at the end of a table or in a quieter area in a pub so that I can concentrate better.”
Case study: Martin and Sal who live in Epsom
Martin was the project manager who led the development of the complex real-time software that enabled Beagle-2 to land safely on Mars. He was diagnosed with early onset Alzheimer’s disease when he was 61. He is supported by his wife Sal and has recently started receiving support from the Young Onset Dementia team.
Martin said: “When I received the diagnosis, it was devastating. I thought this was something you get when you are much older, not at my age. It can be hugely frustrating. I feel as if there is battle going on in my head to remember things. The support we have received from the Young Onset Dementia team has been incredibly reassuring. We feel as if a weight has been lifted. The team is very positive. They help me to identify what I want to achieve, break down any obstacles and set achievable goals to help me to do those things – so I had stopped cycling but have now taken this up again and I am also now doing voluntary work.”