Experiences and needs of spouses of persons with young‐onset frontotemporal lobe dementia during the progression of the disease

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Although dementia often occurs in older people, it can also develop before the age of 65 years 1. This group is defined as people with young‐onset dementia (YOD). The prevalence of dementia in persons age 64 and below in Norway with a population of 5 million people is estimated to be at least 4500 2.
Two of the most common types of dementia in early life are Alzheimer's disease (AD) and frontotemporal or frontotemporal lobe dementia which is an umbrella term (FTLD), mainly for progressive afasi, semantic and logopedic dementia, with impact on language and behaviour 3. In the following text, younger persons with FTLD are denoted as yo‐FTLD. Both AD and FTLD are progressive brain disorders leading to increasing helplessness and impairment in activities of daily living, which lead to more caring tasks, burden and stress for the entire family of a person with YOD 5. A prevalence study on yo‐FTLD showed the average age at onset to be 52.8 years 7. FTLD is a more common cause of YOD and appears nearly equal distribution by gender 8.
The yo‐FTLD often changes their personality, and compared to young people with AD, they have less insight in their own situation. The carers of the yo‐FTLD are also often more distressed than other carers due to the patients’ uncritical behaviour 5.
People with YOD are generally in a different life situation compared to older people with dementia. They often have children and youngsters living at home, are rather physically fit and are in the work force situations which generate different needs compared with needs of older people with dementia. YOD has a significant impact on spouses, characterised by increasing caregiving tasks, stigma and increased anxiety and depression, especially in the spouses of yo‐FTLD 10. Such problems and distress are not only found in the later stages of YOD, but also in the earlier stages and during the process of establishing a diagnosis 11. However, younger people with AD and FTLD are still mainly assigned to the same type of health services as older people with dementia.
Few studies have explored the needs of persons with YOD and their families. However, some have published report that both people with YOD and carers need more information about the disorder, as well as tailored services 13.
In Norway, a few specialised care models exist for the group with YOD 12, but to our knowledge, tailored services to support the group of yo‐FTLD, their spouses, and the families are rare. Although yo‐FTLD does not represent a large group of people, those inflicted and their families encounter great challenges and problems. It is necessary to increase knowledge about the carers’ needs to provide good services adapted to their stage of life and living situation. This is because the life situations of persons with yo‐FTLD and their families deviate markedly from the situation of older persons with FTDL, the former are usually working and have partners in jobs, and they may have children at home. In rather young age, they are experiencing a rare, sudden and unexpected progressive disease, ordinarily associated with old age, which are changing their lives and future prospects completely. There is a need for more research on the spouse's experiences and their wishes for support, to be able to present tailored, knowledge‐based support.
Two review articles showed that, so far, there has been little research focusing on carers’ of all ages experiences and coping efforts to handle living with a person with FTLD, and how the situation influences their life 17. To our knowledge, research on the needs of carers of with yo‐FTLD is even scarcer.

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