Local people under the age of 65 with dementia can now benefit from a ground breaking new service offered by Nottinghamshire Healthcare NHS Trust.
The Working Age Dementia service is for anyone below the age of 65 who has a suspected or established diagnosis of dementia. Other terms commonly used to describe the condition are ‘younger people with dementia’, ‘early onset dementia’, and ‘work age dementia’.
The innovative new service has been developed within the Mental Health Services for Older People (MHSOP) directorate in recognition of the different needs and requirements that people below the age of 65 have compared to older people with the condition. The service boasts one of the very few Occupational Therapy Consultants in the country and a specialist assessment clinic.
Tracey Wilkinson, Occupational Therapy Consultant for Working Age Dementia, said: “This is a really exciting new development. It is the first service of its kind in the country to be lead by an Occupational Therapy Consultant. The focus will be on learning to live with a diagnosis of dementia by empowering and supporting individuals to manage their care needs and continue to live their lives in spite of their diagnosis.”
Dementia is seen as a disease that only affects our older population, in reality, dementia can affect anyone at any age. Throughout the UK it is estimated that there are over 15,000 people below the age of 65 with dementia. It is estimated that in 2009 there will be 247 people (aged 30-64) with dementia in Nottinghamshire with this figure rising to 260 in the next ten years.
Tracey continues: “We hope that this new service will work to ensure that younger people with dementia receive earlier diagnosis, good-quality information and access to the specialist support they require. Therefore, enabling them to be active in managing their care needs in environments that are age appropriate, provide choice and which maintain their self esteem and level of functioning to the greatest extent possible.”
Whilst symptoms of dementia are similar regardless of age, people below the age of 65 have very different needs requiring a different approach. For example, younger people are more likely to be in work at the time of diagnosis, have dependent children or family and often have a rarer form of dementia. Many have experienced difficulty accessing age appropriate support and specialist dementia services as much of the current service provision is aimed at the older person with dementia.
The new service was developed in response to feedback from service users and carers and to ensure that it meets the requirements of those who will be using it, service users and carers were also involved in the process and creation of the service.
Historically, people under 65 years with dementia have experienced many different clinical pathways including neurology, adult mental health services, mental health services for older people and acute hospital services to obtain a diagnosis. This resulted in individuals and their carers feeling they were being ‘pushed from pillar to post’. This service aims to put an end to this as it will provide a comprehensive diagnostic service with clear pathways of referral and a single point of access in line with recommendations from the National Dementia Strategy.
Individuals will be seen in a multi-disciplinary diagnostic clinic led by the Occupational Therapy Consultant and comprising a Consultant Psychiatrist, Neuro-psychologist and Consultant Neurologist. It will provide advanced diagnostic imaging with specialist scans as well as comprehensive neuro-psychological assessment to aid in diagnosis. Individuals will be given information regarding their diagnosis, (if they wish to receive their diagnosis), and access to counselling and ongoing support services if they choose.
As the priority for this service is maintaining individuals in the community, community based services are its focal point. Service users will be seen by specialist workers within the MHSOP community team for the area they live for ongoing assessment, support and treatment. They will support people to maintain autonomy, control and independence in all aspects of their lives for as long as possible. Intervention and care packages will be tailored to the individual needs of each person, focusing on empowering individuals, and maintaining skills, roles and independence to improve wellbeing and quality of life.
As dementia is a progressive disease, the needs of individuals invariably change, the service will work closely with social care colleagues to ensure needs, packages of care and carer’s needs are identified and coordinated. The service will also be working in partnership with the Alzheimer’s society, other third sector agencies and community services to ensure a whole systems approach to care is delivered.
