care to plan: a tailored resource for family members of persons with dementia

Conditions: Dementia; Alzheimer Disease; Memory Loss

Summary: the present study will refine and conduct a preliminary efficacy evaluation of care to plan. care to plan is an online care planning tool that provides a succinct and clear overview of various types of dementia caregiver interventions, administers a brief validated assessment of risk, and generates individualized recommendations for dementia caregivers as well as resources that link users to a selected recommendation. there remains a lack of individualized information that can directly meet the diverse needs of caregivers or their relatives with alzheimer's disease or a related dementia (adrd). this project will advance scientific knowledge, technical capability, and clinical practice as they pertain to adrd management and caregiver support.

given the well-documented health implications of dementia family caregiving, existing interventions are designed to modify the more challenging aspects of care for a relative with alzheimer's disease or a related dementia (adrd) in order to improve key outcomes. however, current research has yet to discern which caregivers are most likely to benefit from different types of interventions or services. there also remains a lack of individualized information that can directly meet the heterogeneous needs of caregivers or their relatives with adrd. this project will advance scientific knowledge, technical capability, and clinical practice as they pertain to adrd management and caregiver support. the research team has developed and tested the feasibility and utility of an online care planning tool prototype (called care to plan, or ctp) that provides a succinct and clear overview of various types of adrd caregiver interventions, administers a brief validated assessment of risk, and generates individualized service recommendations for adrd caregivers as well as resources that link users to a selected recommendation. the goal of ctp is to offer a more efficient, user-directed process to link adrd caregivers to the services that may be most appropriate for them given their needs, the needs of their relatives, and other contextual characteristics. we will deploy and more fully evaluate ctp for family caregivers of persons with adrd who seek services in riverside health system (rhs) in the state of virginia. the specific aims are to: 1) implement ctp for 20 family members of persons with adrd in four rhs clinical sites (phase i) over a 1-month period; and 2) evaluate the preliminary efficacy and implementation of ctp (phase ii) via an embedded randomized controlled evaluation for 100 newly enrolled adrd caregivers over a 6-month period. we anticipate that the ctp will serve as an innovative, low-cost tool that both families and long-term service and support providers can utilize to better meet the diverse needs of family caregivers of persons with adrd in their communities.

Eligibility criteria:
inclusion criteria: the care recipient has received a provider diagnosis of alzheimer's disease or a related dementia (adrd); and 2) the caregiver is 21 years of age or older; 3) english-speaking; 4) self-identifies as someone who provides help to the person with adrd because of their cognitive impairments; 5) the caregiver indicates a willingness to use care to plan (ctp); and 6) caregiver resides in one of 4 riverside health regions (based on zip code). exclusion criteria: those who do not meet the inclusion criteria above are not eligible. additionally, those who endorse a history of a serious mental health disorder whose: a) symptoms have exacerbated in the last six months, and b) are not receiving steady, ongoing pharmacological or other treatment for these symptoms, will be excluded from the project.

Keywords: caregiving