Date of Award
Doctor of Philosophy
Applied Social Studies
Dr. Aine de Roiste
As of 2016 there will be as many as 5,000 people with EOD (early onset dementia) in Ireland (Haase, 2005). This group experiences depression, changes to relationships, in how they relate to friends and their community (Alzheimer’s Australia, 2007) as well as a gradual reduction in social contact with friends and relatives (Haase, 2005). Approximately half of EOD caregivers will have symptoms akin to anxiety and depression (Bentham & La Fontaine, 2005). However, younger people with EOD are marginalised in society (Keady & Nolan, 1994), and there has been little research into interventions and strategies from the perspective of those involved. This research aimed to address this, by exploring experiences and identifying what is most helpfril to the individual, their relatives and those who work with them. The research comprises tour studies: a postal survey (Study 1), in-depth interviews with carers familial (n=6) and professional (n=9) (Studies 2 & 3) and an exploratory EOD group intervention (Study 4).
Key findings showed persons with EOD reported loneliness and loss of confidence. Quality of life was affected with many painful, off-time changes such as employment and young children. EOD has a devastating impact on the family unit. Caregivers reported experiencing a lack of support, high levels of uncertainty and health issues. They also reported difficulty finding appropriate social outlets for the person with EOD. Health care professionals reported that there are currently no designated services for people with EOD in Ireland. Diagnosis is problematic and pathways to services are haphazard. Age restrictions act as a barrier to certain services.
The findings outlined in this thesis imply that current dementia services in Ireland do not frilly support younger individuals with dementia. A fresh, person-centred approach to strategies in EOD is required; the individual and their personhood should be central to our practice. Typical dementia services are not always responsive. Uncertainty and frustration experienced by this group could be addressed by EOD coordinators, and clearly delineated care pathways. Participants seemed enthusiastic and positive about sharing meeting others in a similar situation. Strategies comprising collaborative social outlets with peer support are valued, and should be considered when designing interventions for this group.
Kilty, Caroline, "Early Onset Dementia : Individual, Family and Professional Perspectives on Experiences and Support Strategies." (2014). Theses [online].
Available at: https://sword.cit.ie/allthe/704