Layers of Caregiving

In taking a fresh look at potential Alzheimer’s treatments, I came across something unexpected. In the stage three clinical trial for the antihistamine Dimebon, researchers found a marked improvement in patients and in their caregivers.

The study reports that patients taking Dimebon showed improved cognitive function, memory, behavior and activities of daily living over a 12-month period, while the condition of patients taking a placebo continued to worsen.

Caregivers, too, appeared to benefit from the effects of the medication on loved ones they cared for. They reported less distress, and spent about one hour less per day on care compared to the placebo group, according to an article by the Fisher Center for Alzheimer’s Research.

The Dimebon research was conducted by the University of Baylor School of Medicine. The company that makes the drug, Medivation, is currently conducting follow up trials. One requirement for eligibility for the trial is for patients to have a dedicated caregiver - someone who cares for them at least five days per week.

The report can be found at The Lancet. Here’s a good summary.

That researchers are considering the patient and caregiver as a unit – and trying to find ways to help them both – is an important step forward. The depression and stress caregivers suffer is well-documented, and there are great advocacy groups to turn to for help. But often elderly themselves, many caregivers don’t think to look outside the family for help, and the family is faced with layers of care giving.

Take the 91-year old matriarch of a large family I know well. Having lost her husband from Alzheimer’s last year, this year she took on the care of her 87-year old sister, who suffers from fast-moving dementia. This summer, our matriarch’s energy began to wane. Cancer recurrence? Depression? Reading Cormac McCarthy’s The Road? After a flurry of e-mails and some long weekend visits, we figured out the cause: Distracted and worried about her sister’s newly broken wrist, she had inadvertently switched to decaffeinated coffee!

Mystery solved, the family worries that caring for her sister is speeding the matriarch’s decline. Though she has spent most of her adult life apart from her sister, once she committed to her sister’s care, their fates were fused, and the family was left figure out how to care for them both. The matriarch thrives in her own house, but the stairs are getting tough for them both, so there are plans to sell. The sister, who is bussed to an adult program during the week, is having bouts of incontinence, and may soon be asked to leave the program. The pressure is mounting to change, to fix, to improve the situation - and fast!

Sound familiar?

How is your family dealing? Who handles the day to day care giving? The big decisions? And who gets to decide? Share your story with us here. In the meantime, the Family Caregiver Alliance has answers to lots of common questions.