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.
“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, 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.”
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 helping in offering support?
In 2017, Kathleen and Living Branches teamed up with the Drexel University College of Nursing and Health Professions (learn more about the partnership in this article) – and 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. A summary of the study was completed in the spring of 2018.
“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.”
While the team found the learnings incredibly valuable, they are even more excited about the tangible actions that have resulted from the study – particularly initiatives that bring caregivers and residents together on a regular basis.
“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, as well as offer tips and mutual support.”
Due to the success of the Memory Café at The Willows, Dock Woods has also launched 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 want these events to feel as much like a ‘day out’ as possible – a bit like meeting good friends at Starbucks,” said Kathleen.
The learnings from the caregiver burnout study, combined with the success of programs like the Memory Cafés, have served as the impetus to keep moving forward by offering new activities and trying out new ideas.
“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.”