Young-onset dementia

4. Particular issues faced by younger people

One major issue facing a person with young-onset dementia is that their symptoms may be very different from the memory loss usually associated with dementia in older people. They could have, for example, problems with behaviour, vision or
language.

The other main issue is often the stage of life at which the person develops the condition. Many younger people with dementia report that the diagnosis was harder to accept because it was completely unexpected and had come ‘at the wrong time’ in their lives. As well as fear about the future, the diagnosis can cause feelings of loss, guilt or anger. The whole family finds it has to adjust to a wide range of changes. 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
  • have older parents to care for
  • have heavy financial commitments, such as a mortgage
  • be more physically fit and active
  • have a rarer and genetic form of dementia.

Some people with dementia may want to continue working for some time after their diagnosis, or feel they have to because they need the money. It is natural to feel anxious about telling your employer about your diagnosis, but doing so will help give protection under the law if you want to keep working. Some people decide to take early retirement and maybe start voluntary work as a way to maintain a sense of purpose. Carers may want or need to continue working – possibly with changed working patterns to fit round a supporting role. They may also be concerned about giving up work to care full time.

Alzheimer’s Society can advise on some issues relating to work and finances, but people with dementia and carers might require specialist advice. This may be available from a disability employment adviser at the local Jobcentre Plus, or from the local Citizens Advice (see ‘Other useful organisations’). People should ask for a benefits check to make sure that they are receiving the benefits to which they are entitled (see factsheet 413, Benefits). Seeking advice about pension rights is also important, particularly as the rules on pensions are changing.

For people with children, it is important that they understand – in an age-appropriate way – what dementia is, how it affects their parent and what changes to expect. Every child is different and will react in their own way. For more see factsheet 515, Explaining dementia to children and young people.

Driving may also be more problematic for younger people with dementia. Some people with dementia are able to drive safely for some time after diagnosis, but there will be a point at which the person will have to stop. For many people with dementia, the decision to stop driving can be a difficult one (see factsheet 439, Driving and dementia).

Some people with an inherited dementia (such as familial Alzheimer’s disease, genetic frontotemporal dementia) will be found by diagnostic genetic testing to have a mutation which has caused the dementia. This raises the possibility of genetic testing of adult birth relatives who do not have any symptoms to see if they too have the mutation. Regional clinical genetics services will offer counselling to see whether such testing – called predictive genetic testing – is the right decision for that person. For more on this sensitive topic (including genetic testing for couples planning to have a baby) see factsheet 405, Genetics of dementia.