Understanding the Lived Experience and Bereavement of Caregivers of People With Alzheimer's Disease
Trial statusNot yet recruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUniversidad Rey Juan Carlos
About this trial
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.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
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.
Disqualifiers
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 population
relatives of individuals diagnosed with AD by a neurologist or geriatrician
Trial design
Design model
Case-only
Time perspective
Cross-sectional
Treatments tested in this trial
Assessment of occupational balance, role performance, caregiving burden, and quality of life among carers or family members of individuals with Alzheimer's disease (AD).
Other interventionAssessment of occupational balance, role performance, caregiving burden, and quality of life among carers or family members of individuals with Alzheimer's disease (AD).
Treatment groups
66 Participants
are divided into 3 treatment groupsGroup A: Group 11 intervention
Group B: Group 21 intervention
Group C: Group 31 intervention
Trial outcomes
Primary outcomes
1
Zarit Burden Interview, ZBI
is a tool designed to assess the level of perceived burden experienced by informal carers of dependent persons. It consists of 22 items that explore emotional, social and physical aspects related to caregiving, allowing the impact of the carer role on their quality of life to be identified. Each item is scored on a Likert scale, with higher scores indicating greater burden.
Time frame
baseline2
Role Checklist
It is an instrument based on the Human Occupation Model (HOM) designed to assess the occupational roles that a person performs throughout their life. It allows for the identification of current, past, and future roles, as well as the subjective value assigned to each one. This instrument is useful for understanding how occupational roles contribute to a sense of identity, the organisation of daily life and overall well-being, facilitating the planning of client-centred interventions.
Time frame
baseline3
Short Form-36 Health Survey
It is a widely used tool for measuring health-related quality of life. It assesses eight dimensions: physical functioning, physical role, bodily pain, general health, vitality, social functioning, emotional role, and mental health. It is a generic instrument, applicable to diverse populations and useful in both research and practice, providing a broad profile of people's health status.
Time frame
baseline4
Occupational Balance Questionnaire
It is an assessment tool designed to measure occupational balance, understood as people's perception of the appropriate distribution of their time and energy in meaningful activities. This questionnaire explores aspects related to satisfaction and management of daily occupations, considering both the quantity and quality of the activities performed. It has proven useful in clinical and research contexts to identify occupational imbalances that can affect health and well-being. The original version was developed in Sweden and has been adapted to various languages and cultures, maintaining its validity and reliability.
Time frame
baselineLocations
Sponsors and contacts
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Source ClinicalTrials.gov
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