Caregiving Clinical Trial
Official title:
Self Care TALK to Promote AD Spousal Caregiver Health
Most individuals with Alzheimer's or dementia return home, where their care is supported by
family and friends. Although family caring at home is usually rewarding, it is often
challenging, too. The demands and responsibilities of caring for a loved one at home can be
stressful. The actual activities of caregiving vary according to the needs of the
individual, but can include helping with bathing, dressing, eating, and many other
activities. Caregivers must learn care techniques and how to manage changes in roles and
lifestyle. While adjusting to these changes, caregivers may be advised to 'take care' of
themselves, but may not receive guidance or support for doing this. In this study, we are
testing a self-care intervention for older, spouse caregivers of persons with Alzheimer's or
dementia to see how helpful the intervention is in reducing distress and in helping
caregivers adopt and maintain healthy lifestyle behaviors.
We have developed an intervention for caregivers that is called Self-Care TALK. The
intervention includes creating a health-promoting, self-care education and support
partnership between caregivers and nurses through the use of weekly telephone conversations.
Each conversation focuses on a health-related topic, such as: healthy habits, building
self-esteem, focusing on the positive, avoiding role overload, communicating, and building
meaning. The conversations follow a basic format, but also are unique to each person.
Participants complete questionnaires before and after the intervention, so that we can test
the effect of participation in Self-Care TALK on caregiver health.
We know that education and support about self-care can be achieved through partnerships
between family caregivers and health care professionals. Our goal is to build on this
knowledge in testing whether participation in the Self-Care TALK intervention will result in
less distress and better health and well-being for spouse caregivers, compared to caregivers
who receive no additional care beyond usual education and support. In working toward this
goal, we are using a partnership approach, in which nurses and caregivers discuss several
health-related topics and mutually identify creative solutions for caregivers to incorporate
self-care and health-promotion strategies into their daily routines. Promoting healthy
outcomes for caregivers is essential to supporting their personal well-being, and to
fostering their ability to continue home care for their loved one.
Informal caregiving, or providing non-paid assistance for a family member or friend who is
unable to care for self, is challenging and stressful. Caregivers commonly experience
negative psychological, emotional, physical, and social outcomes, including depression,
strain and other disruptions in health and well-being. The overall aim of the study is to
test the effectiveness of a health-promoting self-care education and support partnership
between advanced practice nurses (APNs) and older spouse caregivers, in reducing perceived
caregiving strain and in promoting health. The theory-based, multi-dimensional Self-Care
TALK intervention is provided using a telephone-based approach to facilitate participation
among carers, considering their concurrent responsibilities in the caregiving role.
A randomized, treatment/comparison, repeated-measures experimental design is used to test
the effectiveness of the health-promoting treatment (Self-Care TALK) compared to usual care,
for spouse caregivers age 60 and older. Subjects must be living with and caring for the
person with dementia and the dementia diagnosis must have been within 2 years of enrollment.
Subjects complete questionnaires at baseline (Time 1) before randomization to the treatment
or comparison group. Treatment group subjects receive written materials related to self-care
and health promotion for use during the TALK sessions. Self-Care TALK is implemented through
6 weekly telephone sessions with advanced practice nurses. Sessions focus on several
self-care topics, including: healthy habits, building self-esteem, focusing on the positive,
avoiding role overload, communicating, and building meaning. Basic content is structured,
but conversations are individualized with regard to each person's environment, abilities,
and activities.
All subjects complete questionnaires again at 8 weeks (Time 2), and 24 weeks (Time 3) after
baseline. Treatment group subjects are hypothesized to have lower caregiving strain, higher
perceived health, well-being, and self-efficacy related to health, and less depressive
symptomatology than comparison group subjects. Promoting healthy outcomes for caregivers of
persons with dementia is essential to fostering ability for continued home-based care.
Comparison group subjects receive written materials related to self-care and health
promotion post Time 3.
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Allocation: Randomized, Intervention Model: Parallel Assignment, Masking: Open Label
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