Title

The Experiences of Huntington's Disease Caregivers

Department

Social Work

Date of Paper/Work

2015

Degree Name

Master of Social Work (M.S.W.)

Type of Paper/Work

Clinical research paper

Advisors

Catherine Marrs Fuchsel

Abstract

Huntington's Disease (HD) is a genetic, inherited, and terminal neurological disorder that affects both physical and mental capacities. The most recent estimates state that 1 in every 10, 000 Americans has HD and more than 250, 000 are at risk of inheriting the disease from a parent (Huntington's Disease Society of America, 2013). Caregivers can be defined as informal or formal. Informal caregivers are typically family members such as spouses, children, or siblings. Formal caregivers are paid, professional caregivers. Family members often become caregivers for diagnosed individuals, however, the need for formal and paid care increases as the disease continues to progress. The purpose of this study is to examine the overall experiences of formal and informal HD caregivers. Qualitative interviews were conducted with seven informal and formal caregivers. The interviews explored the caregivers' experiences and nine themes were developed: (a) Lack of Education and Awareness, (b) Resources and Support, (c) Denial, (d) Burnout, (e) Attachment, (f) Progression of the Disease, (g) Grief and Loss, (h) Complex Mental Health, and (i) Family Dynamics. The findings of this study suggest that a lack of knowledge, awareness, and resources contributes to caregiver distress. The findings also indicate that HD negatively impacts the family system. While this study is exploratory in nature, it holds implications for social work practice, policy, and future research.

Keywords

Huntington's Disease, caregivers, burnout, qualitative

Creative Commons License

Creative Commons Attribution 3.0 License
This work is licensed under a Creative Commons Attribution 3.0 License.