Being told that you or a loved one has dementia at any age can be very difficult, and you may experience a range of different emotions as time goes on. The needs of younger people with dementia and their friends and family are not just related to age. Younger people may have different concerns and interests to older people. Here you will find more information and links to further support and guidance if you are a younger person with dementia. 

Being a younger person with dementia

Being a younger person with dementia

If you have been diagnosed with dementia under the age of 65, you are described as 'younger person with dementia' by health and social care professionals. You may also hear other terms such as, 'early onset dementia', 'young onset dementia', and 'working age dementia'. The symptoms of dementia may be similar regardless of a person's age, but being a younger person means you may have different needs and require different support.

Particular issues faced by younger people

In general, younger people with dementia are more likely to be in work at the time of diagnosis, have a partner who still works, have dependent children and ageing parents who they need to care for, be more physically fit and active and have heavy financial commitments such as a mortgage. They may possibly have a rarer form of dementia.

What are some of the emotions and feelings you may go through?

  • Guilt: this is a very common reaction. You may think that you have done something wrong or not tried hard enough to prevent the disease. You may even feel you're to blame. Be assured, this is an organic disease whatever the type of dementia. It is not your fault.
  • Sense of loss: You may feel sad that perhaps you will not be able to do some of the things you'd planned.
  • Relief: This may seem strange to some, but you may feel relieved that you finally have a diagnosis. There may even be a sense of euphoria - now that you have a concrete diagnosis you can do something about it.
  • Acceptance: You may never accept your illness. This is OK. You will find a way of living with it.
  • Feelings: Shock, disbelief, denial. Shock leading to disbelief or denial is a very common reaction. Sometimes denial can be a good thing and can help you cope with the reality of your disease at your own pace. Fear of a loss of control over the future and over your own life. Not knowing what might happen can be very frightening indeed. Common fears include becoming a burden to your family, becoming demanding and difficult and generally being a nuisance. You may be frightened of passing your condition on to any children you may have. Many fears people have are of physical indignities, such as becoming incontinent and dribbling.

Coping with a diagnosis

Talking with other people can help you to deal with your diagnosis. You may find that you only want to talk to your husband or wife, or close family. Or it may be difficult talking to those closest to you. Thinking and talking about these feelings can take the fear away, knowing that you have control over future events. Or if not control, knowing that you have a say in what happens to you. Talking to your doctor about treatments, drugs, counselling, group support, occupational therapy and complementary therapies can help you feel more in control. You may also find support is available from social services and other voluntary organisations, such as MIND, Age Concern, the Samaritans, as well as the Alzheimer's Society.

 

Supporting a young person or a child affected by dementia

If you are a younger person who has children, or you have grandchildren who will want to understand the changes that may occur if you have dementia or a memory problem, the following booklet may be useful for you.


 

Useful contacts: 

Richmond Council Adult Access Team
Address: Adult Social Services, Civic Centre, 44 York Street, Twickenham, TW1 3BZ
Phone: 020 8891 7971
Minicom: 18001 020 8891 7971
Email: adultsocialservices@richmond.gov.uk

Alzheimer's Society Southwest London
Phone: 020 8877 0033
Web:www.alzheimers.org.uk
Email: swlondon@alzheimers.org