Caregiver Stress, Dementia, Alzheimer Disease, Lewy Body Dementia, Parkinson Disease Dementia, Frontotemporal Dementia
Conditions
Brief summary
This research is being done to develop a unique matching process for caregivers of persons living with dementia, such as Alzheimer's disease, Lewy body dementia, frontotemporal degeneration, or other dementia syndromes. Dementia caregivers often assume greater caregiving burden than do non-dementia caregivers, and the caregiving duration tends to be longer. Many caregivers do not have the adequate support they need. Peer-to-peer support has been shown to improve quality of life, more engagement with services, improve caregiver health, and reduce hospitalizations in the person they are caring for. This study will help determine whether caregivers of persons with dementia would find a technology-based caregiver matching program valuable for the purpose of emotional support.
Interventions
BEHAVIORALAlgorithm
For purpose of finding peer-to-peer support, current and/or former caregivers of persons with dementia will be matched using an algorithm. They can then choose make a connection and maintain a connection for the duration of the study.
BEHAVIORALRandom Match
For purpose of finding peer-to-peer support, current and/or former caregivers of persons with dementia will be randomly matched. They can then choose make a connection and maintain a connection for the duration of the study.
Sponsors
National Institute on Aging (NIA)
Minnesota HealthSolutions
Mayo Clinic
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
DOUBLE (Subject, Investigator)
Intervention model description
Participants will be randomly assigned to two different arms of the study: one where the algorithm matches individuals and one where matches are randomly assigned.
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* The participant must have a family member that has been diagnosed with one of the following forms of dementia: Parkinson's/Lewy body dementia, any frontotemporal lobar degeneration dementia, or Alzheimer's dementia. * The participant must identify as a care partner or caregiver who has contact with their loved one with dementia, in person or by phone, and provides social/emotional support and full or partial assistance with daily activities at least 3 days per week. * The participant must have been caring for their loved one with dementia for at least 3 months. * All participants must have access to a computer and be able to use the internet. * All participants must be English speaking. * All participants must agree to participate in the 15-month study, which includes completing questionnaires, brief virtual interactions with the study coordinator quarterly, and actively interacting with the website and potential matches. * All participants must agree to follow-up contact throughout the duration of the study, which is anticipated to last 3 years.
Exclusion criteria
* Caregiver's loved one does not have a confirmed diagnosis of dementia. * Caregiver is unable to provide consent. * Caregiver was or has been in that role for less than 3 months.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Match Satisfaction Questionnaire | 12 months | All participants will complete a match satisfaction questionnaire to assess whether being matched to a supportive caregiver via an algorithm based on personal preferences results in greater match satisfaction than being matched at random. Questions are scored from 0 to 4 with a possible total of 28. Scores are interpreted such that an overall total of: 0 - 7 = low satisfaction; 8-14 = medium/average satisfaction; 15-28 = high satisfaction |
| Change over time from Baseline Resilience to 12 months | Baseline, 12 months | All participants will complete questions surveying resilience to determine whether caregivers randomized to algorithmic matching based on personal preferences will report a greater sense of resiliency after being matched than caregivers who are randomly matched. |
| Change over time from Baseline Quality of Life to 12 months | Baseline, 12 months | All participants will complete questions surveying quality of life to determine whether caregivers randomized to algorithmic matching based on personal preferences will report improved quality of life after being matched than caregivers who are randomly matched. |
| Scale of Perceived Social Support | 12 months | All participants will complete survey questions regarding perceived level of social support to assess impact on match satisfaction. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Survey of Executive Skills | 12 months | All participants will complete questions regarding executive functioning (e.g., flexibility, problem-solving) to determine whether the level of these skills relates to ease or difficulty in finding a satisfactory supportive caregiver match. |
Countries
United States
Outcome results
None listed