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Not yet recruiting NCT07251738

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

— Observational Alzheimer Disease (AD) Occupational Therapy Family Caregivers

For patients and families

In plain language

An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.

What is being studied
The protocol lists: Assessment of occupational balance, role performance, caregiving burden, and quality of life among carers or family members of individuals with Alzheimer's disease (AD)..
Who it may be relevant to
Registry conditions: Alzheimer Disease (AD), Occupational Therapy, Family Caregivers. Basic parameters: No limits · All.
What needs checking
Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
Where it takes place
Center list to be confirmed — check the primary protocol.
Next step
Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →

Unsure about the terms? Read our patient guide →

Overview

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.

Interventions

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

Primary outcome measures

  • Zarit Burden Interview, ZBI [Time frame: baseline]
  • Role Checklist [Time frame: baseline]
  • Short Form-36 Health Survey [Time frame: baseline]
  • Occupational Balance Questionnaire [Time frame: baseline]

Eligibility criteria

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.

Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.

Healthy volunteers: Yes

Study design

Observational model
Case-only

Study locations

Center list to be confirmed — check the primary protocol.

Publications

  • Risquez-Salgado N, Garcia-Bravo S, Huertas-Hoyas E, Perez-Corrales J, Salcedo-Perez-Juana M, Donovan M, Palacios-Cena D, Bullon-Benito E, Garcia-Bravo C. Understanding the Lived Experience and Bereavement of Caregivers of People with Alzheimer's Disease: A Mixed-Methods Study Protocol. Healthcare (Basel). 2026 Mar 31;14(7):899. doi: 10.3390/healthcare14070899. PMID 41975901

Identifiers

NCT: NCT07251738 · 041220246522024

Primary sources (government registries)

View this study on ClinicalTrials.gov ↗