"How will we cope?" Couples With Intellectual Disability Where One Partner Has a Diagnosis of Dementia

Area of Science:

• Gerontology
• Intellectual Disability Studies
• Dementia Research

Background:

• Individuals with intellectual disability (ID) have an elevated risk of early-onset dementia.
• This study is the first to examine the experiences of couples where one partner has ID and the other has dementia.

Purpose of the Study:

• To explore the lived experiences of couples affected by dementia when one partner has an intellectual disability.
• To understand the perspectives of individuals with ID, their partners, family members, and social care professionals.

Main Methods:

• Utilized narrative life story interviews with four individuals with ID whose partners had dementia.
• Conducted one joint couple interview and 13 semi-structured interviews with family members and social care professionals.
• Gathered data representing the experiences of eight couples affected by ID and dementia.

Main Results:

• Couples experienced significant emotional impacts, including fear of separation and challenges in future planning.
• Partners with ID often assumed caregiving roles, shifting traditional relationship dynamics.
• Family members emphasized relationship commitment, while social care professionals highlighted the need for specialized knowledge.

Conclusions:

• Intimate relationships among couples with intellectual disability can endure into later life, even with the onset of dementia.
• Support providers require sensitivity to individual life stories and specific knowledge of how dementia affects individuals with ID.