Dementia Caregiver Study Highlights the Importance of Togetherness

Dementia Caregiver Study Highlights the Importance of Togetherness

Dementia Caregiver Study Highlights the Importance of Togetherness

In recent years, the healthcare community has poured much attention into the special needs of people with dementia – and there have been exciting advances in therapies, treatments, and care strategies. At Living Branches, we celebrate these advances – but we know there’s just as big a need to focus on the caregivers of dementia patients. That is why we decided to participate in a dementia caregiver study with Drexel University.

“As someone who has been a caregiver for a loved one with dementia, I know just how challenging and consuming – both physically and mentally – it can be,” said Kathleen Roberts, former director of dementia care strategy at Living Branches. “Caregivers need to take care of themselves, because they are the most important people in the life of someone with dementia.”

Dementia Caregiver Study with Drexel University

When Kathleen assumed her role at Living Branches, she had a lot of important questions about caregivers for people living with dementia: What are the biggest causes of caregiver burnout? What resources would be most helpful in offering support?

To find answers, Kathleen and Living Branches teamed up with the Drexel University College of Nursing and Health Professions (learn more about the partnership). Their first collaboration was a study on dementia caregiver burnout.

The team hosted focus groups that included residents living with dementia, their family members (adult children and spouses), and the Living Branches staff members who care for them.

“In terms of learnings, we primarily validated hypotheses that came from our collective experiences,” said Kathleen. “However, it was definitely helpful to have confirmation of the biggest issues facing caregivers – not only for the sake of the study, but also for all of the caregivers to hear that they weren’t alone and to have validation of the challenges and emotions they face on a daily basis.”

Results of the Dementia Caregiver Study

“The theme of isolation came up quite a bit in our study,” said Kathleen. “Both the person living with dementia and their caregivers often feel very alone in their challenges, and we learned that opportunities to connect with others who share similar experiences can be incredibly freeing and healing.”

In 2018, The Willows was the first Living Branches community to open a Memory Café, which hosts social gatherings for residents living with dementia and their caregivers.

“One of the reasons dementia can be so isolating is that people stop leaving their home,” said Kathleen. “Programs like the Memory Café offer a safe environment – as well as a break from the daily routine. Residents have an opportunity to see familiar faces, and caregivers can share their experiences and offer tips and mutual support.”

Due to the success of the Memory Café at The Willows, Dock Woods also piloted a similar program – with ever-changing events, such as lectures and group activities. Other times, the events are more low-key and center around coffee, snacks, and conversation.

“We wanted these events to feel as much like a ‘day out’ as possible – a bit like meeting good friends at Starbucks,” said Kathleen. “We’ll never be able to make the role of a caregiver easy,” said Kathleen. “But we can do everything in our power to make it easier, especially when it comes to connecting with a support network. The simple act of sharing a cup of coffee with someone who understands your experience can transform a difficult day into a positive memory – and offer encouragement for a refreshed start.”