According to the Alzheimer’s Association, close to 15 million Americans are caregivers for family members or friends with Alzheimer’s disease or other forms of dementia.
While they may think they are doing this difficult job according to their loved ones’ wishes, new research finds that caregivers often don’t know what’s important to those they tend.
Researchers at Penn State interviewed nearly 300 people with mild to moderate dementia and their family caregivers. They asked the person with dementia how important five different core values were to them: autonomy, not being a burden on their families, control, contact with family, and safety. Then they asked the caregiver how important they thought those values were to the person with dementia.
They found a big gap. Across the board, those five issues were more important to the person needing care than their caregivers thought.
Penn State’s Steven Zarit, who led the study, says he was surprised how big the gap was. During the early stages of dementia, he said, people are fully capable of having conversations about their care and what’s important to them, even though these talks may be difficult.
Sometimes they may be a bit evasive about it, he said, but putting things in hypothetical terms help. Zarit suggests starting conversations with a question like: “We know you might need help down the road, what’s important to you?” He said that usually gets a good response.
Zarit added that caregivers find themselves making many decisions for their loved ones later on, so it is very important that they have a strong sense of what the person would want.