integration of health information technology and promotion of personhood in family-centered dementia care

Conditions: Neurocognitive Disorders; Alzheimer Disease; Caregiver

Summary: alzheimer's disease and related dementias (adrd) are leading causes of disability and often result in communication deficits of the person with dementia (pwd) that can complicate adrd caregiving and clinical care. the research team will work with stakeholders to develop and design a personalized assistive and alternative communication (aac) device that relies on information technology (it) and touchscreens to promote communication and personhood for pwd about their care preferences and experiences. this study will integrate the aac into an existing health it intervention that already facilitates clinical communication between caregivers and providers of pwd. a clinical trial will be conducted to evaluate outcomes of 58 dyads (pwd/caregivers) and their health care provider utilizing the my pati (my person assisted touchscreen interface)intervention as an adjunct to care and care giving for 6 months.

the target enrollment for the clinical trial is 58 dyads of caregivers and people with dementia (pwd), where 58 unique dyads of caregivers/pwd will participate. the team plans to enroll a total of 58 dyads across two participating clinical sites. participants will be randomly assigned to either the full intervention or a control condition for a period of 6 months, where they will be asked to communicate clinical and other relevant information with one another as part of regular caregiving and clinical care activities. several psychosocial outcome variables for providers, caregivers, and pwd will be assessed. we will compare outcomes based on group assignment and different amounts and patterns of use of the mypati (e.g., minimal/non-users versus frequent users). the primary outcome variables are quality of life for caregivers and pwd. the research team will recruit an estimated 15 healthcare providers across both sites at the end of study to assess their experience with my pati using open and closed ended queries.

Eligibility criteria:
inclusion criteria caregivers: * regular access to the internet (via computer or smartphone) and telephone * 21 years-old or older * providing caregiving activities (activities of daily living and/or instrumental activities of daily living) for an average of 2 hours or more per day of direct assistance or supervision for a person with adrd * speak and understand english or spanish. care recipient: * 60 years or older * speak and understand english or spanish * have an established diagnosis of a neurocognitive disorder (alzheimer's disease, vascular dementia, frontotemporal dementia, lewy body dementia or parkinson's disease dementia) * receive a score on the mini mental status exam of less than 24 * be able to complete the eligibility vision screen. healthcare providers: \* provide ongoing healthcare and support services to pwd and their families. exclusion criteria caregivers: * provide care to a pwd living in an assisted living facility or nursing home * plan for the pwd to be placed in a long-term care facility during the study period * plan to end their role as caregiver within 6 months of study enrollment * have their own major medical conditions affecting independent functioning (e.g. illness or disability) or cognitive impairment * do not speak and read english or spanish * have known active suicidal ideation care recipients: * significant visual or hearing impairment (with supports) * known active suicidal ideation * schizophrenia diagnosis

Keywords: health technology assistive and alternative communication device family centered care personhood