Innovations in Dementia Empowerment and Action
Status: | Recruiting |
---|---|
Conditions: | Alzheimer Disease, Neurology |
Therapuetic Areas: | Neurology |
Healthy: | No |
Age Range: | 50 - Any |
Updated: | 3/2/2019 |
Start Date: | October 16, 2018 |
End Date: | May 31, 2022 |
Contact: | Heather Wehr |
Email: | ageidea@uw.edu |
Phone: | 1-888-655-6646 |
Aging With Pride: Innovations in Dementia Empowerment and Action
The lack of efficacious research-based interventions for such vulnerable older adults with
Alzheimer's disease and related dementias (AD/RD) and their caregivers (CGs) is a significant
public health problem. Caregiving of sexual/gender minority older adults with AD/RD is of
concern due to social stigma, marginalization, and isolation, which may be barriers to
sustaining caregiving. It is necessary and timely to translate evidence-based culturally
adaptable interventions for this underserved and stigmatized population. Reducing Disability
in Alzheimer's Disease (RDAD) has been evaluated in a randomized controlled trial and has
shown to successfully train community-dwelling CR (care receiver)-CG dyads to increase the
physical activity and functioning of individuals with AD/RD and their CGs and to teach CGs
techniques for managing behavioral symptoms of CRs. RDAD consequently decreases stress of
CGs, delays institutionalization of CRs, and increases health related quality of life (HRQOL)
of CRs and CGs. Thus, this study will evaluate the effect of the standard RDAD among lesbian,
gay, bisexual, and transgender (LGBT) CRs with AD/RD and their CGs, and this study will test
a personalized intervention tailored to better respond to distinct risks experienced by CGs
and LGBT CRs with AD/RD, addressing unique sexual/gender minority CG risk factors (e.g.,
identity management, stigma-related adverse or traumatic life events, and lack of social
support).
Alzheimer's disease and related dementias (AD/RD) and their caregivers (CGs) is a significant
public health problem. Caregiving of sexual/gender minority older adults with AD/RD is of
concern due to social stigma, marginalization, and isolation, which may be barriers to
sustaining caregiving. It is necessary and timely to translate evidence-based culturally
adaptable interventions for this underserved and stigmatized population. Reducing Disability
in Alzheimer's Disease (RDAD) has been evaluated in a randomized controlled trial and has
shown to successfully train community-dwelling CR (care receiver)-CG dyads to increase the
physical activity and functioning of individuals with AD/RD and their CGs and to teach CGs
techniques for managing behavioral symptoms of CRs. RDAD consequently decreases stress of
CGs, delays institutionalization of CRs, and increases health related quality of life (HRQOL)
of CRs and CGs. Thus, this study will evaluate the effect of the standard RDAD among lesbian,
gay, bisexual, and transgender (LGBT) CRs with AD/RD and their CGs, and this study will test
a personalized intervention tailored to better respond to distinct risks experienced by CGs
and LGBT CRs with AD/RD, addressing unique sexual/gender minority CG risk factors (e.g.,
identity management, stigma-related adverse or traumatic life events, and lack of social
support).
We will address the following aims:
Aim 1. Test the translation and enhancement of intervention designed to increase physical
activities of older adult care receivers (CRs) with AD/RD and their CGs. Aim 2. Evaluate the
short- and long-term effect of the standard and personalized intervention on primary
(physical activity and functioning; perceived stress for CGs; independence/residential status
(institutionalization) for CRs) and secondary outcomes (HRQOL; depressive symptomatology;
behavioral disturbances for CRs). Aim 3. Test the moderating roles of CR-CG characteristics,
including type of CR-CG relationship, sex, and severity of CR AD/RD, on the treatment effect
of the standard and personalized intervention.
Aim 1. Test the translation and enhancement of intervention designed to increase physical
activities of older adult care receivers (CRs) with AD/RD and their CGs. Aim 2. Evaluate the
short- and long-term effect of the standard and personalized intervention on primary
(physical activity and functioning; perceived stress for CGs; independence/residential status
(institutionalization) for CRs) and secondary outcomes (HRQOL; depressive symptomatology;
behavioral disturbances for CRs). Aim 3. Test the moderating roles of CR-CG characteristics,
including type of CR-CG relationship, sex, and severity of CR AD/RD, on the treatment effect
of the standard and personalized intervention.
Inclusion criteria for care receiver
- Age at enrollment is 50 years of age or older
- Self-identify as LGBT (or sexual or gender non-binary or same sex sexual behavior)
- Have dementia, including Alzheimer's disease
- Living in the community, not in a care facility.
- No more than 150 minutes a week of moderate intensity exercise.
Inclusion criteria for care giver
- Provide care to the care recipient with dementia.
- Unpaid
- Live in the community, not in a care facility
Neither care receiver nor caregiver:
- No known terminal illness (with death anticipated within the next 12 months)
- No hospitalization for a psychiatric disorder in the 12 months prior to baseline
- Not Parkinson's disease, Huntington's disease, traumatic brain injury, or stroke which
resulted in persistent muscle weakness or paralysis.
- Not blind, or unable to hear even with hearing aids, or unable to walk.
- No plans to move out of study geographic area during the next 4 months.
- Any physical limitations/chronic conditions preventing participation in an exercise
program.
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