NATIONAL PLAN TO ADDRESS ALZHEIMER'S DISEASE: 2017 UPDATE. Strategy 3.C: Assist Families in Planning for Future Care Needs

09/01/2017

Understanding How Families Find and Access Long-Term Services and Supports. Little is known about how families and older adults gather information, make decisions, and access long-term care when a loved one needs assistance such as after a dementia diagnosis. In 2015, ASPE undertook an exploratory qualitative research project to examine where families gather information, how they make decisions, how well these arrangements work, and how local factors influence this process. The project includes focus groups with caregivers in four communities in one state, as well as an environmental scan of the resources for finding LTSS in these communities.

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Helping Persons with Dementia Communicate Their Care Desires. Many families face difficult care choices for their loved ones with advanced dementia who often have lost the ability to communicate meaningfully. These choices are usually made in nursing homes and other institutional settings, often with a limited amount of time to discuss and decide. To address this gap, NIH-supported researchers developed a Goals of Care (GOC) intervention, which combined a video decision aid and a structured care plan meeting for family decision makers. Their main goals were to evaluate if the GOC intervention improved quality of communication and decision making, and whether it would improve palliative care for people with advanced dementia. The study showed that the intervention improved end-of-life communication, enhanced palliative care plans, and reduced hospital transfers for nursing home residents with advanced dementia.

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Dementia Caregivers' Technology Preferences: Design Insights from Qualitative Interviews. This study by Shreve, Baier, Epstein-Lubow, and Gardner, and published in Gerontechnology, was intended to determine which information technology design characteristics and functionality family caregivers of adults with dementia would find most helpful. Emerging information technology may ease the burden of family caregivers, particularly those caring for adults with AD/ADRD. User-driven information technology design methods can determine which information technology design characteristics and functionality family caregivers of adults with dementia would find most helpful. Family caregivers were overwhelmingly receptive to the idea of website or smartphone technology interventions and detailed specific needs that technology could address, including alleviating the psychological burden and social isolation inherent in caregiving, providing access to information and resources, and helping them to ensure care recipients' safety and track the progression of disease. The findings highlight potential technology solutions to address the overwhelming social isolation and stresses prevalent among family caregivers of adults with AD/ADRD. Given the unmet needs of this growing group of consumers, researchers and developers of information technology should incorporate caregiver perspectives, both during the design process and in the resulting products themselves.

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AFTD Support Group Affiliation Initiative. The Support Group Affiliation Initiative connects volunteer support group facilitators to AFTD, and each other, for networking, education and peer support. To date, 71 facilitators from groups in 27 states have joined this growing network dedicated to providing FTD-specific support. By affiliating with AFTD, support group facilitators can: attend ongoing trainings by FTD experts as well as troubleshooting and networking calls with affiliated peers, and gain access to AFTD-branded materials to help educate group members and promote the group locally. AFTD's has always offered assistance to FTD support groups. Through this initiative, AFTD can ensure more people living with FTD and their caregivers have access to high-quality and FTD-specific support systems and services.

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