Caregiving and Cooperation

Caregiving and cooperation go hand in hand. We aren’t good at caregiving if we can’t get loved ones to cooperate with us. We also have to coordinate care from many people to keep dementia patients healthy. Our conflict-ridden country could learn something valuable from our approach.

Caregiving and Cooperation

I tried to carry the entire burden of my mother’s care for a long time. This is a common theme with caregivers. Some are reluctant to invite others in because they think they have the right answers. Maybe we also fear losing control when more parties get involved. Last week’s rocky election shows that people resist cooperating on an even larger scale across the country. Everyone believes they know the correct approach so they won’t listen to different views. This type of stalemate doesn’t enhance dementia care and it won’t help our nation evolve. A research project at the University of North Carolina School of Medicine shows how cooperating more can offer benefits to people with dementia. It might provide an example for other aspects of modern life.

Caregiving and Cooperation Among Providers

Students in different training programs at the UNC Department of Allied Health  were required to complete a joint project. They had to create a plan to address unmet needs of elderly people. Some students were studying physical therapy. Others were training to become occupational therapists. The group also included speech therapists. Students had to develop a menu of activities that would engage elderly participants, including people with dementia. Together the groups created a plan that offered physical activity, sensory stimulation, and discussion of current events.

Dementia patients worked with physical therapists on tasks like kicking or throwing a ball.  Elders worked on conversation skills and memory strategies with speech-language pathology students. Occupational therapy students used newspaper articles to get elders talking and tackle cognitive tasks.

Near the end of the project students taught participants and staff members how to continue the activities. Their collaborative work impressed the staff enough to keep it going. In a follow-up survey, 43 percent of staff reported they were still using the strategies of the cooperating students. Families of the participants got some benefit from the project, too. Students made videos and recordings of personal stories collected from participants with dementia. They gave copies of these stories to the families so they could use them at home.

Why Cooperation Matters

Sometimes it drives me crazy when I have multiple therapists scheduling visits with my mom. I feel like I need my own secretary to manage her care. But I have seen first-hand that therapists get better results when they coordinate their efforts. Mom is more limber and relaxed when the nurse, physical therapist and occupational therapist work together. Wouldn’t it be great to see our nation reject the conflict model and work cooperatively to solve problems? It takes more time to listen and plan together. But in the end everyone gets to make a contribution and outcomes improve for us all.

Voices of Dementia Patients

Voices of dementia patients disappear. Almost all of us have cameras and video recorders, but many of us don’t think it’s important to record our loved ones. Consequently, voices of #dementia patients vanish from our whole culture. A team in England is working to change this trend through the Dementia Diaries project.

Voices of Dementia Patients

The Dementia Diaries project — which originated at Leeds Beckett University in England — collected 1965 audio diaries from participants with early onset dementia. They provided participants with mobile hand sets and invited them to make audio diaries of their experiences. This work was part of a concerted effort to “develop a public record and a personal archive of individuals’ experiences of living with dementia.”

Real Voices of People with Dementia

You can explore the Dementia Diaries project by going to the online archive published by On Our Radar. On Our Radar is a “team of journalists, software architects, digital storytellers and development workers” who use the power of citizens to spark change. Their work solicits opinions from people who live at the margins of society. They publicize this material so policy makers hear more ideas as they make decisions affecting us all.

Before my mother got sick, she was very well-organized. Mom had a methodical approach to solving problems. Influential people relied on her because she was very responsible, yet also gracious. If Old Mom could speak, she’d have lots of ideas to offer leaders who must now address the dementia epidemic.

The Dementia Diaries project did us a tremendous favor by asking #dementia patients to share insights about the disease. I wish I would have done that with my mother long ago. If your loved one still talks, take a minute to ask their opinions about things and record their responses. In the future, you will value what they say even more than you do now.