Young Onset Dementia
Dementia which occurs under the age of 65 is often referred to as young onset or early onset dementia. There are approximately 4,000 people in Ireland with early onset dementia.
Developing dementia at an early age means you may need to consider things like employment and the impact on young children. You and your family are not alone. You can get support to help you to take the steps you need to take to live well with dementia and plan for the future.
About early onset dementia
There is a wider range of diseases that cause early-onset dementia and a younger person is much more likely to have a rarer form of dementia. Alzheimer’s disease is the most common form of early onset dementia. Other forms are vascular dementia, frontal-temporal dementia, Lewy bodies dementia and Korsakoff’s syndrome, which is alcohol related dementia.
People with other conditions, such as Parkinson’s disease, multiple sclerosis, Huntington’s disease or HIV and AIDS, may also develop early onset dementia as part of their illness. Also, people with Down’s syndrome and other learning disabilities can develop dementia at an early age.
Genetics and early onset dementia
Families affected by early onset dementia may worry that it can be inherited. It is important to point out that not all cases of early onset dementia are thought to be inherited.
One rare form of dementia that can be passed from generation to generation is called Familial Alzheimer’s. This form of dementia can affect people in their 30’s and 40’s. Where Familial Alzheimer’s is present, there is a 50% possibility of passing on the gene to the next generation who would then eventually develop the condition. Some forms of frontal-temporal dementia or Picks condition have a strong family history and in some cases a genetic link has been found. Again, these inherited types of dementia are rare.
If you have a family history of these rare types of dementia you can talk to your doctor about genetic counselling and if it is appropriate for your family. Genetic counselling is a process which will help to determine if your family history suggests genetic testing is an option to be considered.
Dementia is a disability, which means that people with dementia are protected by Irish Equality Law from some kinds of discrimination, in employment and in buying goods and using everyday services.
There are nine categories named in equality law. These are called “the nine grounds”. Disability is one of the nine grounds. Dementia falls within the definition of disability, which means that people with dementia are covered by the equality legislation, if they experience discrimination related to having dementia.
People with dementia in employment are also entitled to “appropriate measures” to help them carry out their work. This is a very important concept in equality law (in the Equal Status Act it is called “reasonable accommodation” and can be very useful in relation to employment.
The obligation to take “appropriate measures” means that if you have difficulty carrying out your work because of your disability, the employer must put in place supports or special facilities to help you. For example, in employment, this could include allowing flexible working hours or providing peer support from other colleagues.
There are limits on what employers have to do. The law says that taking appropriate measures cannot place a “disproportionate burden” on an employer. A big employer with more resources is expected to do more than a small employer with fewer sources.
You are not obliged under Equality Law to disclose to your employer that you have dementia, however, if you do not do so, it will be impossible for them to explore whether they can make “reasonable accommodation.”
You cannot be dismissed from employment simply because your employer becomes aware you have dementia. Your employer would need to be able to demonstrate that you are unable to do your job, despite options for reasonable accommodation having been explored.
There is a point at which dementia may impact on a person’s ability to do their job to the extent that reasonable accommodation will not be possible. Also, in some types of work, there may be very little that can be done in the way of reasonable accommodation. Not every situation in which a person is treated differently on the basis of having a disability will constitute discrimination.
If you develop dementia while working, you should look for detailed information and advice on your rights.
Talking to children and young adults
It is very natural to want to protect children and young people from a diagnosis of dementia.
Finding the words to explain dementia and what it means is difficult, especially if you are just coming to terms with your diagnosis.
However, it is important to try to be as honest as you can about the situation. Try to provide clear explanations and plenty of reassurance. You may want to tell your children yourself or you may want help from their other parent or grandparents / trusted loved one. Let your children know who they can talk to about dementia in addition to you, so they know the people they can go to with questions or worries.
You and your family know your children and can adapt what you say to suit their age and you can sense how much they can cope with. It is important to let them know it is ok to ask questions and share their feelings. Listen to what they have to say.
Tips for explaining to children
- Explain the situation as clearly and calmly as possible.
- Give practical examples of changes you have experienced to help you explain what you mean, examples that maybe they saw or heard.
- Focus on the things that you can still do, as well as those that are becoming more difficult.
- Be patient. You may need to repeat your explanations on different occasions, depending on the age of the child or young person.
- Once you have set out the facts, encourage the child or young person to ask questions.
- Ask how the illness makes the child or young person feel. Listen really carefully to what they have to say, and try to imagine the situation from their point of view, so that you can find out exactly what might be worrying them.
- Give the child or young person plenty of reassurance and hugs, where appropriate.
- Don’t be afraid to use humour. It often helps if you can laugh about the situation together.
- Also bear in mind that although the news may be distressing, children and young people may find it a relief to know that some of your behaviour is part of an illness, and is not directed at them.
Involving children and young people
Try to find ways to involve the child or young person in your daily life and routine. It is good to attempt to have regular uninterrupted ‘quality time’ with them, where possible. This will help make the situation seem more normal for them, and will prevent them from feeling shut out. However, don’t give them too much responsibility, or let these tasks take up too much of their time − it’s important that they continue with their normal lives.
Emphasise that simply spending quality time with you − going for a walk together, playing games, sorting objects or making a scrapbook of past events – is the most important thing that the child or young person can do..
Take photographs of the child or young person and you together, to remind you all that there can be good times, even during the illness.
Don’t leave a child or young person alone in charge, even briefly, unless you are sure in your own mind that they are happy about this and will be able to cope.
Make sure that the child or young person knows that you appreciate their efforts, and help them see how their involvement is of benefit to you.
Resources on talking to children
- Our Explaining to Children factsheet
- When Dementia is in the House: A Canadian website for children and parents
- The Alzheimer Association in America have online videos and resources.
- Young dementia and me: This blog is run by Alzheimer’s Australia NSW and is for young people who have a parent with dementia.
- Dementia Australia: a community awareness resource for children
- Dementia in my Family A Dementia Australia initiative explaining dementia to children and teenagers from preschool up to 16 years old +
- Young Dementia UK: information and resources on telling children about a diagnosis of dementia
- Alzheimer Research UK: Explains dementia to young kids, juniors and teens
- The Crystal Project – Feathers in my Brain book explaining a diagnosis of dementia to children, first of it’s kind in Ireland