People with Dementia and Their Care Partners Have an Increased Loneliness Risk

Ashwin Kotwal, MD

Credit: UCSF

A new study sought to widen the knowledge gap on why people with dementia and their care partners have an increased loneliness risk and identified primary themes: losing external social networks, losses with the dyadic relationship, and the burden of a care partner supporting their loved ones.¹

“Unmet social needs negatively impact quality of life, and that can lead to health outcomes like depression and cardiovascular disease, as well as high health-care use and early death,” said lead investigator Ashwin Kotwal, MD, from the UCSF Division of Geriatrics and San Francisco VA Health Medical Center.² “We know from previous research that older adults with higher levels of social isolation have more than double the odds of nursing home placement.”

Some of the knowledge gaps in the association include limited information on the experiences of loneliness over the trajectory of dementia. Navigating and coping with social loss for individuals for both individuals with dementia and care partners may change as dementia progresses, impacting the social dynamic.¹ Health, social, and financial stressors may intersect. Even after their loved one with dementia dies, a care partner might still have the same stressors and loneliness.

Additionally, limited research exists on the distinction between subjective loneliness and objective social isolation of social relationships, which can give insight into the connection between physical, mental, and social health. Previous studies have primarily focused on the social well-being of the care partners—not the dyads.

Investigators conducted a secondary analysis of semi-structured qualitative interviews from several studies including people with dementia and care partners. They wanted to examine social change, isolation, and experiences of loneliness. Interviews took place between November 2018 and January 2020.

The team leveraged participants from 2 studies. The Dementia Palliative Care evaluated unmet palliative care needs and opportunities for intervention, and the Music and Dementia Caregiving study explored the role of music and caregiving relationships for people with dementia and their care partners at home. Participants either lived with mild-to-moderate dementia who could self-report (n = 24), were active care partners who lived with a person with dementia (n = 33), and were care partners who lost their loved ones only 3 – 12 months earlier (n = 33).

On average, people with dementia were 80 years old (67 – 94 years, 38% female), and 78% were diagnosed with Alzheimer. As for care partners, they were on average 67 years old (range: 40 – 87) and 69% female.

The team identified 3 primary themes regarding why people with dementia and their care partners have an increased risk of loneliness. The first theme was losing social networks due to feeling discomfort around others, caregiving responsibilities, and worsening cognitive deficits. The second theme was the shift of the dyadic relationship as care partners face “anticipatory grief,” as well as greater loneliness due to the change in their relationship with their partner. The third theme was the need for adaptative strategies such as a support group to alleviate the burden placed on the care partner, helping them feel more comfortable in social activities.

“Researchers and clinicians should acknowledge the profound and persistent feeling of loss of companionship…that contributes to long-term loneliness and grief,” investigators wrote. “Support for care partners might therefore draw on interventions designed to address pre- and post-death grief earlier in the disease course…Other interventions might involve psychologists and dementia-trained social workers who focus less on “fixing” loneliness or grief and more on validation, anticipatory guidance, and longitudinal support.”

Limitations investigators outlined include not being able to conduct additional interviews, interviews being conducted before the pandemic which impacted social lives, and future research needs a more diverse sample of Hispanic/Latinx non-English speaking participants, and people of various socioeconomic statuses.

“People who are really invested in their marriage or partnership have more to lose when one partner develops dementia,” Kotwal said.² “But those with lower marital quality have already lost the emotional support from the marriage that can be protective against loneliness and depression.”

^References

1. ^{Kotwal AA, Allison TA, Halim M, et al. "Relationships, Very Quickly, Turn to Nothing": Loneliness, Social Isolation, and Adaptation to Changing Social Lives Among Persons Living With Dementia and Care Partners. Gerontologist. 2024;64(4):gnae014. doi:10.1093/geront/gnae014}
2. ^{Active Social Lives Help Dementia Patients, Caregivers Thrive. EurekAlert! March 18, 2024. https://www.eurekalert.org/news-releases/1037924. Accessed April 5, 2024.}