Strengthening Support for People Affected by Rare or Young Onset Dementia

What is the Rare Dementia Support Impact Study?

The Rare Dementia Support (RDS) Impact Study is a five-year study (2019-2023) funded by the Economic & Social Research Council and National Institute for Health Research in the United Kingdom (UK). It is a collaboration between Nipissing University in North Bay, University College London (UCL) in England, and Bangor University in Wales, led by Professor Sebastian Crutch at the Dementia Research Centre, UCL.

It is the first major study of its kind, receiving the equivalent of $6 million, to learn more about the support needs and care preferences of people affected by a rare or young onset dementia. The study is also exploring the value of different types of support groups providing social, emotional and practical support.

Working alongside colleagues at UCL and Bangor University, the team at Nipissing University is led by Dr. Mary Pat Sullivan, Professor of Social Work and Social Gerontology, who cared for her own mother who was diagnosed with dementia at the age of 51.

"There was little understanding of how the diagnosis of dementia affected a young family and few supports for my parents, my siblings and my mother’s parents. Navigating the health-care system was a constant challenge in addition to the stress of not understanding my mother’s condition. Living in northern Ontario was also difficult because we had to travel to obtain specialist neurological services and there was no local follow up. Our findings from the RDS Impact Study confirm that the situation hasn’t changed significantly." – Dr. Mary Pat Sullivan, RDS Impact Study lead researcher

Why is the RDS Impact Study important?

When we think of dementia, we tend to think of a disease that causes memory problems in people in their 70s, 80s or older. However, dementia is better understood not as a homogenous disease but rather, as an umbrella term for several diseases that affect brain functions (for example, memory, language, perception, movement, and so forth). Alzheimer’s disease is one type of dementia that affects memory and is common in older people.

Photo courtesy of the Centre for Ageing Better.

In other types of dementia, memory problems are less dominant. These dementias often called rare or atypical or inherited, tend to affect younger people in their 30s, 40s, 50s or 60s. Rather than showing signs of memory loss, people affected by rare or young onset dementias have other symptoms, for example, changes in behaviour and personality, problems with understanding language or communicating, or changes to how visual or perceptual stimuli are interpreted. According to researchers, almost four million people worldwide have the rare or young onset types of dementia (Hendricks et al., 2021).

While we know quite a lot about Alzheimer’s disease, people living with a rare and young onset dementia are underrepresented in research studies, meaning that the impact on people’s lives and their support needs is less understood. This poor knowledge results in delays in diagnosis, including receiving an incorrect psychiatric diagnosis before receiving a correct dementia diagnosis (Woolley et al., 2021).

The young age of onset and disease progression also means that family life, careers and other interests are disrupted when symptoms emerge or a diagnosis is received. Given these considerations, it seems clear that the experiences and needs of people with rare or young onset dementias are not only different, but they also need to be better understood.

By exploring the needs and experiences of rare or young onset dementias, the RDS Impact Study will contribute to improving understanding of, and strengthening support for people affected by, rare or young onset dementias. What we learn through collaboration between researchers, people with lived experience and professionals will help us recommend, strengthen and develop needed support services and interventions.

An example of how the study is already strengthening support is the recent funding of Rare Dementia Support Canada, a new support service for Canadians living with rare or young onset dementia. We are grateful to The Hilary and Galen Weston Foundation for their generous donation to enable the development of Rare Dementia Support Canada.

What is involved?

The RDS Impact Study is a large-scale study and is made up of several smaller projects. You can choose to take part in one or more of these smaller projects if you decide you would like to be involved. Activities you can engage in include:

Answering questions about your experience of living with or caring for someone living with rare or young onset dementia (for example, getting the right diagnosis) either individually or with a family member/friend.

Completing questionnaires about your experience of living with or caring for someone living with rare or young onset dementia.

Taking part in creative activities, either through drawing or poetry, to tell us about your experience of living with or caring for someone living with dementia. You do not need to have creative experience to participate in either of these activities.

Testing online courses designed for care partners to provide information and support around certain types of rare or young onset dementia.

• These activities will be done with a member of our research team and will last on average about an hour.
• Activities are done remotely, from the comfort of your home, and require the use of a computer, tablet, or smartphone with an internet connection. You can also participate via telephone.
• The study has been approved by the Nipissing University Research Ethics Board. Your participation is completely voluntary and confidential.

Photo courtesy of Alpha Stock Images.

Who can participate?

The RDS Impact Study is open to anyone living in Canada who is 18 years or older AND is:

• Living with a rare or young onset dementia OR
• Caring for someone living with a rare or young onset dementia
• Working with or has a professional interest in rare or young onset dementia

Rare or young onset dementias include: Young onset Alzheimer’s disease (YOAD); Frontotemporal dementia (FTD), including behavioural variant FTD (bvFTD) and primary progressive aphasia (PPA); Lewy body dementia (LBD); Posterior cortical atrophy (PCA); as well as other atypical or mixed dementias.