People living with Alzheimer’s disease and related dementias rely on support from paid (personal care assistants, healthcare professionals) and unpaid care partners (family, neighbors, friends). The importance of providing person-centered supports, emphasizing the capabilities, choices and personal history of the person living with dementia, is recognized by advocates, healthcare professionals and researchers throughout the world. The involvement of family and related partners in supporting person-centered care improves quality of life. To implement person-centered care requires policies and programs that define expectations and processes to guide and inform care partners, both paid and unpaid. This paper describes public policies that govern assisted living facilities in the United States. A large share of assisted living residents have a diagnosis of dementia or cognitive impairment. A 2003 national assisted living workgroup developed guidelines for the person-centered care (PCC); to date, little is known about how state regulations that license assisted living facilities address PCC or involve families in care planning. [Funded by National Institute on Aging: RF1-AG082308; Thomas & Jutkowitz, Co-Invesigators]

Methods. We analyzed regulatory requirements for licensed assisted living facilities that have dementia care rules. Using a content analysis approach, the study team reviewed these documents for the presence of language regarding PCC and family involvement in resident care planning. The team applied codes that reflected the presence or absence of PCC or family involvement, and developed descriptive codes that summarized requirements.

Results. We identified marked variation in how states’ assisted living regulate PCC and family involvement in the care of people with dementia. Three broad categories describe regulatory approaches: 1. dementia-specific and directive, 2. non-dementia-specific and detailed, 3. passive, and 4. absent.

Discussion. Assisted living is an important source of residential long-term care for older adults living with dementia. Person-centered care and family involvement in care planning can improve the quality of life for residents in these settings, which are licensed by state. Prior research found that while 79% of licensed assisted living must have a care plan, only one-third require family involvement and 20% describe PCC. This paper describes how states define and describe these care processes. For example, regulations in Oregon and Pennsylvania include dementia-specific and directive descriptions of PCC and family involvement. These states define family as part of the “care team,” require staff to be trained in communicating with families, and suggest supports for families whose relative has dementia. Maryland represents state regulations that are non-dementia-specific and detailed. They require family councils and staff training in family interactions, but do not specifically address dementia care despite the allowance of Alzheimer’s care units. Other states take a “passive” regulatory approach by including PCC and family involvement in a list of policies that facilities should adopt, but without explaining how. Finally, most state regulations lacked either PCC or family involvement requirements. These categories can inform government officials who develop assisted living policies, and be used by researchers to compare the outcomes and well-being of residents with dementia who live in these settings.