New Revelations About Living Arrangement Trends of Persons Living with Dementia

A new research letter explores the trends in living arrangements of persons living with dementia, particularly in light of the pandemic. Published in early December 2023, the letter references a cross-sectional study of data from the National Health and Aging Trends longitudinal survey of Medicare enrollees aged 65 and up. The study focuses on individuals aged 70 and older with probable dementia, and examines factors including their living arrangements, care needs, and functional status.

Research Letter Findings

Doug Pace

Doug Pace, senior director of long-term and community-based care at the Alzheimer’s Association

The research letter reviewed data from 2015 to 2021 and found that the majority of persons living with dementia lived at home. However, the percentage of those living at home who lived with others declined from 59% in 2015 to 49% in 2021. The proportion of those who were living alone rose from 16% to 22% in 2021.

The pandemic also affected the number of persons living with dementia who lived in nursing homes. Though 15% of survey participants lived in a nursing home in 2019, that percentage declined during the pandemic.

Several other factors likely impact the living arrangements of persons living with dementia. The research letter poses that the availability of a family caregiver likely correlates with nursing home admission, and the decline in marriage rates and birth rates may impact the availability of family caregivers. Additionally, if a person has non-institutional care available, that may delay their admission to a nursing home. Medicaid’s expansion of home- and community-based services gives those with dementia additional care options, too.

Importantly, the research letter finds that the average number of unmet needs was similar across each setting. The levels of unmet needs remained stable or declined in every care setting except for residential care settings other than nursing homes. In these settings, the level of unmet needs increased over time.

Understanding the Pandemic’s Impacts on Persons with Alzheimer’s and Dementia

Doug Pace, senior director of long-term and community-based care at the Alzheimer’s Association, explains that the pandemic has impacted persons with Alzheimer’s in three main ways. “We know the pandemic exacerbated social isolation for people living at home and those in residential community settings,” he says. “There have been several studies around that effect.”

Additionally, the pandemic delayed some people from being able to change their living arrangements. For some who were living at home, moving into a residential living situation wasn’t an option.

The pandemic also resulted in cancelled or delayed medical appointments. Pace notes that those challenges in accessing care may have delayed an Alzheimer’s diagnosis.

The Decision to Age in Place

The research letter noted that about 15% of survey participants aged in place at home. Pace explains that such an arrangement can have several benefits. “We know that all of us want to live in the least restrictive environment possible,” he says. “We know that there are benefits to that consistent environment.” When a person ages in place, that arrangement may provide opportunities for them to stay more involved with family members and friends. “Being able to thrive in the community they’re in is certainly a benefit,” says Pace. Additionally, with the growth of home- and community-based services, those living with Alzheimer’s have access to more services than they had in the past.

There are potential drawbacks to aging in place, too. Pace notes that social isolation can be an issue when people don’t have opportunities to get out and be involved in their community. The potential for such isolation is highlighted in the study’s data, which notes an increase in the number of persons living with dementia who lived alone during the pandemic.

Additionally, Pace notes that as the disease progresses, there’s an increased need for a safe environment, such as one with secured perimeters. A person living with Alzheimer’s may also need help with activities of daily living and medication administration.

What the Senior Care Industry Can Do to Improve Residential Memory Care

The Alzheimer’s Association developed the Dementia Care Practice Recommendations for all professional care providers who work with individuals living with dementia. “We looked at the latest evidence to say what’s best for providers in long-term care and community-based services,” explains Pace.

The recommendations highlight the importance of a focus on person-centered care. “If you look at all of the recommendations, the first is to know the person and meet them in their reality,” says Pace. The recommendations emphasize a move away from a staff-directed system.

Pace also notes the importance of creating a home-like environment, referencing small home projects like Green Homes, which have private rooms and private bathrooms.

Staff also play a key role in providing quality care. “It’s so important to have a sufficient number of trained staff,” says Pace. “You not only need the correct number of staff, but also have to make sure that the staff is trained in dementia care.”

He explains that care providers should also emphasize non-pharmacological approaches to dementia-related behaviors. “There’s an overuse of antipsychotic medications,” Pace says. “There are efforts to replace those with non-pharmacological approaches.”

Additionally, Pace encourages long-term care providers to embrace a culture of quality improvement. “State regulations and federal regulations are the floor,” he says. “This past year, the Alzheimer’s Association partnered with the Joint Commission to launch the Memory Care Certification for Assisted Living Facilities.” Completing the certification can demonstrate that an assisted living facility is committed to not only meeting care regulations, but in going above and beyond in truly providing quality care.

When it comes to better supporting persons with Alzheimer’s, providing information, education, and support at the right time is important. “We talk about early, middle, and late-stage Alzheimer’s,” says Pace. Those living with Alzheimer’s and their family members will have different needs during those stages.

It’s also critical to make sure Alzheimer’s support programs are culturally sensitive. “We know Alzheimer’s disease affects minority populations disproportionally,” says Pace. He notes that it’s important to ensure those living with Alzheimer’s have options for home and community-based living. “More organizations are adding on adult day care and home care, which allows them to serve more people in more settings,” he explains.

Finally, those living with Alzheimer’s need to have a robust care planning and assessment process. “That process needs to really listen to the voice of the resident,” says Pace.

Whether persons with Alzheimer’s age in place or transition to residential care, the senior care industry can support them in many ways. From adopting person-centric residential care approaches to pivoting to also offering in-home services, the industry can play a key role in providing persons with Alzheimer’s the support they need.

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