Unlike many other dementias, familial Alzheimer’s disease often affects people in middle age, or even younger, meaning that it is likely that there will still be children at home. When any parent faces a serious illness, their children need support and understanding. Particularly in the case of a degenerative brain disease, the young person’s development proceeds in the opposite direction to their ill parent’s. What this means to a young person will change and evolve over time.
The fact that there is an inheritance risk associated with this disease will naturally add to the psychological and emotional factors that will play a part in how young people deal with its effect in their parent.
There are 2 aspects to consider:
Firstly, how to help the young person manage and understand the disease they are witnessing in their parent. Children are very perceptive. They are likely to be confused by the symptoms of this disease in a parent or family member, and without being given factual information they may fill the gaps in their knowledge with their imagination or with incorrect facts. It is therefore very important to facilitate conversation, provide information and allow for emotions and feelings to be discussed.
There are several links which provide helpful information in respect of providing young people with the information and opportunities for discussion that they need.
The links are not all Alzheimer’s disease specific, but provide information that is transferrable and relevant:
- Understanding dementia: a guide for young people (PDF download). Also available through Dementia Helpline Alzheimer Scotland Action on Dementia: Tel 0808 808 3000
- Carers Trust: Young Carers
- Information for Young Carers from the NHS
- Alzheimer’s Association; Living with Alzheimer’s – just for kids and teens.
Secondly, there is a need to address the young person’s understanding of the risk of inheriting the gene for this disease, in an age sensitive and appropriate manner. Predictive testing is usually only done in people over 18. However if a person younger than 18 wants to talk about testing, they can be referred to a clinical geneticist who will go through the issues and concerns that the young person has. It is important that a young person is supported in their request not just told that they can’t be tested until 18.
It is however worth noting that most clinical geneticists don’t like testing young people (even aged 18/19 etc.) as often the choices we make at that age aren’t necessarily the ones we’d make when we’re older. Advice would still be that if a person under 18 is asking about predictive testing, the best thing would be for them to be referred to their local regional genetics service.
Please refer to the section on genetics for more information about this topic.