Understanding the Lived Experience and Bereavement of Caregivers of People With Alzheimer's Disease (ALCARE)

Universidad Rey Juan Carlos

Status: Not yet enrolling

Conditions: Occupational Therapy; Family Caregivers; Alzheimer Disease (AD)

Treatments: Other: Assessment of occupational balance, role performance, caregiving burden, and quality of life among carers or family members of individuals with Alzheimer's disease (AD).

Study type: Observational

Funder types: Other

Identifiers

NCT07251738

041220246522024

Details and patient eligibility

About

The main objective of this study is to explore the lived experience of caregivers and family members of people with Alzheimer's disease (AD), from the beginning of caregiving through the bereavement process following the patient's death. Using a mixed-methods design, qualitative data will be collected through in-depth interviews and combined with quantitative data obtained from standardized scales. The results will aim to determine whether prolonged caregiving significantly affects the caregiver's or family member's personal, emotional, and occupational well-being, as well as whether it leads to a reorganization of activities of daily living (ADL), an increased perception of burden, and/or a decreased quality of life. The study will also examine the presence of positive adaptation experiences.

Enrollment: 66 estimated patients

Sex: All

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• Inclusion criteria for Group 1: relatives of people diagnosed with AD by a neurologist or geriatrician, who have suffered the loss of a relative with AD; who have lived with and/or cared for the person with AD until the end of their life; who agree to participate voluntarily in the project and who have signed the informed consent form.
• Inclusion criteria for Group 2: relatives of people diagnosed with AD by a neurologist or geriatrician; who live with and/or care for the person with AD; who attend the Day Centre and who agree to participate voluntarily in the project and have signed the informed consent form.
• Inclusion criteria for Group 3: relatives of people diagnosed with AD by a neurologist or geriatrician; who have their relative institutionalised in a nursing home and who agree to participate voluntarily in the project and have signed the informed consent form.

Exclusion criteria

• Those who have not lived with or cared for relatives with AD and who do not agree to participate in the study will be excluded from the project.

Trial design

66 participants in 3 patient groups

Group 1

Description:

relatives of people diagnosed with AD by a neurologist or geriatrician, who have suffered the loss of a relative with AD; who have lived with and/or cared for the person with AD until the end of their life

Treatment:

Other: Assessment of occupational balance, role performance, caregiving burden, and quality of life among carers or family members of individuals with Alzheimer's disease (AD).

Group 2

Description:

relatives of people diagnosed with AD by a neurologist or geriatrician; who lived with and/or cared for the person with AD; who attended the Day Centre

Treatment:

Other: Assessment of occupational balance, role performance, caregiving burden, and quality of life among carers or family members of individuals with Alzheimer's disease (AD).

Group 3

Description:

relatives of people diagnosed with AD by a neurologist or geriatrician; who had their relative institutionalised in the Residence

Treatment:

Other: Assessment of occupational balance, role performance, caregiving burden, and quality of life among carers or family members of individuals with Alzheimer's disease (AD).