Institute for Health & Ageing

Younger Onset Dementia: An Australian Postgraduate study

Younger Onset Dementia: An Australian Postgraduate study

Younger Onset Dementia clip

What is Younger Onset Dementia?

Younger-onset dementia, also known as early-onset dementia, is generally defined as the onset of dementia before the age of 65 years. The experiences of people with younger-onset dementia are often influenced by their phase of life. Younger people are more likely to be in full-time employment, have substantial financial commitments, and may be raising children. They may also be physically fitter than older people living with dementia. This often means that people and couples experiencing younger-onset dementia may have unique information, service and support needs compared to older people and couples living with dementia.

The timely diagnosis of dementia has considerable implications for both the person living with dementia and their family. Many younger people living with dementia and their families often report significant delays in receiving a diagnosis. The delay in obtaining a diagnosis is due to a range of factors including:

  • misattribution or dismissal of symptoms by health professionals;
  • delays in taking action by the person with dementia and their family due to misunderstanding symptoms or fear of stigma;
  • difficulties or delays in obtaining a referral;
  • perceptions or beliefs that dementia only occurs in older people; and
  • being a younger age and not looking ill.

The delay in receiving a diagnosis can often result in considerable stress for both the person living with younger-onset dementia and their families.

What do we know about the impact of dementia on the couple relationship?

There is little in the way of research regarding the specific issues faced by couples living with younger-onset dementia and how they can best be supported throughout the dementia journey to maintain the quality of their relationship.

Several studies conducted with older couples living with dementia have highlighted changes in numerous important areas including:

  • the perceived quality of the relationship;
  • joint-decision making and reciprocity;
  • role changes in the relationship;
  • concerns regarding sexual issues;
  • changes in emotional and physical intimacy; and
  • feelings of grief and guilt regarding the changes in the relationship.

There have been few studies conducted with couples living with younger-onset dementia that have taken a relationship focus and fewer still that have included the perspectives and views of the person living with younger-onset dementia. This may result in a reliance on research conducted with older couples to inform the development of information, services and supports which may not be applicable to or adequately meet the needs of younger couples living with dementia.

The current study is a Melbourne based study looking at the impact of younger-onset dementia on the couple relationship. Several studies have investigated the impact of dementia on relationships in older couples but little is known about the experiences of younger couples living with dementia. More specifically, this study aims to explore:

  • the impact of younger-onset dementia on relationships, intimacy and sexuality from the perspective of the person with dementia, the spouse/partner, and the couple jointly;
  • the impact of the different types of dementia on relationships, intimacy and sexuality; and
  • the information, service and support needs in regards to relationships, intimacy and sexuality for couples living with younger-onset dementia

We are currently conducting a pilot study and hoping to work with couples who would be willing to share their experiences with us.  All information collected as a part of our study will be strictly confidential.

We are hoping to talk with couples from across Australia who are either married or cohabitating, living in the community, and one spouse/partner has received a diagnosis of dementia before the age of 65 years. Interviews can be conducted either in person or via Skype at a time convenient for couples.

Please access our Younger Onset Dementia blog for further details in how you might participate in a study.

This research has been reviewed by the Human Research Ethics Committee at Australian Catholic University (2016-256H).