H052 Changed relationships: experiences of people with Huntington’s disease, Alzheimer’s disease, Korsakoff’s syndrome and their informal caregiver
Year: 2024
Type: conference-abstract
Abstract: Background People with Huntington’s disease (HD), Alzheimer’s disease (AD), and Korsakoff’s syndrome (KS) share symptoms like cognitive impairment and behavioral changes, which can affect their relationship with informal caregivers. Aims Understanding the dynamics of the relationship between patients and their caregivers. Methods Twenty-eight semi-structured interviews were performed with five HD, five KS and four AD dyads of patient and caregiver independently. Data were analyzed using a combination of thematic analyses and frame work analyses. Results Four main themes and nine subthemes were derived from the data. Respondents described (1) the influence of changed behavior of the patient, including (1.1) changed initiative, (1.2) agitation and (1.3) changed empathy on the relationship, leading to interpersonal tensions. Caregivers were questioning whether the changes were caused by (1.4) the disease or personal traits. (2) Caregivers had to adapt to manage conflicts, using various (2.1) communication strategies and by (2.2) embracing reality. (3) Changes in interpersonal dynamics related to dependency, responsibility and autonomy, included (3.1) shifting roles and (3.2) changes in shared decision making. Caregivers struggled to balance (3.3) protecting the patient from harm and respecting patient autonomy. The (4) overall perception of the relationship changed, focusing on caregiving, while some patients remained unaware of any changes. Conclusion Relationships between patient and caregiver chang due to the symptoms of the patients ‘disease. Results of this study can contribute to supportive care for both patients and their caregivers.
Authors: Esther de Groot, Anouk M van Loon, Hester Fidder, Ruth B Veenhuizen, Martin Smalbrugge, Marike E de Boer
Language: English
Subfield: Psychiatry and Mental health
Field: Medicine
Domain: Health Sciences
Open Access status: gold
OpenAlex ID: W4402374291