Unique contributors to caregiver well-being across neurodegenerative diseases that present with dementia

Five million new cases of dementia are diagnosed every year worldwide. These diagnoses disrupt home environment patterns and relationships and cause  repercussions on families. Accordingly, dementia caregivers experience higher stress than other groups and face diverse care demands. Existing literature suggests dementia presentation may impart different caregiver challenges: cognition in Alzheimer’s disease (AD); delusions in Dementia with Lewy Body (DLB); and neuropsychiatry in Parkinson’s disease associated dementia (PDD). Inconsistencies in studies comparing dementia caregivers make it difficult to draw clear conclusions. First, caregiver definitions are inconsistent. Second, caregiver well-being is under-represented. Third, disease pathology and associated-dependencies place differential demands on caregivers, which has yet to be examined in a comparative framework.  

The proposed research will address this gap by comparing dementia-related symptoms that contribute to caregiver well-being[LL1] . The aim is to determine the unique profile of contributors to caregiver well-being in neurodegenerative diseases (i.e. AD, DLB, PDD) present with dementia[LL2] .

It is expected dementia presentations and associated factors will differentially impact caregiver well-being. Dr. Roland will administer questionnaires to evaluate well-being (life-satisfaction, depression), burden and coping in caregivers. Focus groups will bring together a range of dementia caregivers from three groups (AD, DLB, PDD) to explore group norms and diverse experiences. Subsequent interviews will further explore the issues pertinent to caregiver well-being. This novel research will identify the unique profile of caregiving factors within a comparative framework. This is important since different presentations of dementia have discrete long-term implications for caregiver psychosocial outcomes.

Relevant knowledge gained from Dr. Roland’s research will inform resources targeted to reduce stressors and support care needs