Young Onset Dementia

There is support for people who are under 65 and who have dementia.

Dementia is a term for a range of disorders resulting in progressive changes in the brain. The term Young Onset Dementia is used when people are diagnosed with dementia before the age of 65. It affects around 42,325 people in the UK (Young Dementia UK), with just over 3,197 people in Scotland (2015). A younger person with dementia and their family may experience a number of difficulties as a result of dementia. For example, often younger people have work commitments, financial constraints like a mortgage, and they may still have children at home or older family members who are reliant on their support. In addition, younger people and their families may feel that a diagnosis of dementia is ‘out of sync’ with their stage of life and may experience difficult feelings receiving and living with the diagnosis.

The Young Onset Dementia Service

The Young Onset Dementia Service works with people who are under the age of 65 with a diagnosis of dementia, living within the NHS Greater Glasgow & Clyde Board area. The service provides specialist support and rehabilitation to the person with dementia and/or their family and carers.

The team consists of:

• Clinical Psychology

• Occupational Therapy

• Community Psychiatric Nurse

How Can I be Referred?

You can access this service through your local Community Mental Health Team or Rehabilitation and Enablement Team. You may have already spoken with your Psychiatrist or Nurse about your difficulties and they may feel that it would be helpful for you to be seen by the Young Onset Dementia Service. They will discuss this with you prior to making a referral to the team. If you and/or your family would like to be referred to the service, please discuss this with a member of your Community Mental Health Team. GPs cannot refer you directly to the service, but they can refer you to your local Community Mental Health Team if required.

Examples of Support Offered

Psychological Wellbeing: Many people continue to live an active and fulfilling life with a diagnosis of dementia. However, you may experience difficult feelings receiving and living with the diagnosis. Talking with a trained clinician can support you to find helpful ways to cope with your feelings, to deal with possible changes in your life, and to improve your wellbeing.

Family and Carer Wellbeing: Frequently, family members and carers feel a sense of satisfaction and commitment to living with and supporting a loved one with a diagnosis of dementia. Of course, family members and/or carers may at times also experience difficult feelings in relation to a diagnosis of dementia and living with the diagnosis. Talking with a trained clinician can support family members (or carers) to find helpful ways to cope with feelings, to deal with possible changes in their life, to understand and support the person with the diagnosis and to improve their wellbeing.

Living Well: Following a diagnosis of dementia, most people wish to continue to be engaged in meaningful activities, connected with other people, and as independent as possible. You and/or your family may wish to think of what activities would be enjoyable for you, what resources are available in your area, and how to continue to engage with life and deal with any possible changes related to your diagnosis. A trained clinician can support you and your family by listening to your wishes and goals, and directing you to activities, groups, and support services suitable for you in your area. Sometimes changes in your abilities can make it difficult to do things that are important to you. A trained clinician can assess your strengths and difficulties and provide aids and helpful strategies for dealing with difficulties.

Dealing with Stress or Distress: Sometimes, you and/or your family members may experience stress or distress. This may be linked to particular changes, symptoms, or behaviours. Understanding what may be causing stress or distress in you and/or your family and what the underlying needs are can be very helpful. A trained clinician can support you, your family, and people involved in your care to understand what is happening better and to use this understanding to select strategies and solutions for overcoming your problems.

People under 65 can develop any type of dementia. However they are more likely than older people to have a less common type, such as fronto-temporal dementia or other dementia with a genetic cause. Younger People with Dementia: Living Well with Your Diagnosis DVD is designed for the person who has just been diagnosed with young onset dementia and for their family and friends. It was produced by NHS Health Scotland in partnership with Alzheimer Scotland and the Scottish Dementia Working Group.