When I read in The New York Times recently about the latest work being done with Alzheimer's patients at Beatitudes nursing home in Phoenix, Ariz., I felt a spark of hope for the future of dementia care. In home care, we have always focused on a patient's individuality -- we visit people on their own turf, where they're comfortable and have access to the things that comfort them and keep them engaged. So it's natural for home care nurses and therapists to incorporate individuality into treatment plans. By contrast, one of the things people fear most about nursing homes is the lack of individualized care, and the perception that different kinds of patients are required to adapt to a rigid institutionalized pattern of care. As the number of people with dementia continues to rise, it's important that we look for ways not only to tailor care for a patient's personal needs and abilities, but also to help educate and support their family caregivers.
Being a family caregiver to someone with Alzheimer's disease or another form of dementia can be one of the most demanding jobs a person ever takes on in life. While all family caregivers at some point meet with struggle in their daily duties, certain behaviors common to dementia patients can make caring for them especially challenging.
Similar to the incessant questioning of a toddler exploring the world for the first time, people with dementia can become very attached to their caregivers, following them around the house, or "shadowing" them from morning till night. At the Visiting Nurse Service of New York, registered nurses, social workers and home health aides encounter this behavior when they care for patients in their homes. They know the relentless questioning, restlessness and frequent agitation from a loved one can really take a toll on a family caregiver, so our nurses work closely with patients and their families to create strategies that make things easier.
Using innovative approaches to dementia care, not unlike those practiced by the staff at Beatitudes in the article mentioned above, VNSNY nurses guide patients and their families toward a less stressful home care approach, improving quality of life and often delaying the move to a nursing home. Helping seniors with dementia age in place with greater independence and quality of life is a primary goal.
The belief is that providing simple comforts to those with Alzheimer's or other forms of dementia, such as encouraging patients to carry a doll, eating chocolate when it makes sense to them or creating familiar daily rituals like stocking and restocking a tackle box, as described in the Times article, engages and calms patients, and improves their erratic behavior.
This idea -- tapping into a patient's innate desires and allowing them to engage in tasks that draw on their interests -- is gaining increasing respect in the scientific community. The work involves the concept of Tailored Activity Program (TAP), which was developed and studied by the Thomas Jefferson University's Center for Applied Research on Aging and Health (CARAH) with grant funding from the National Institute of Mental Health. In the CARAH TAP study, occupational therapists identified previous capabilities and interests of individuals with dementia, developed activity plans based on these interests and trained families to use these activities to engage and calm patients1. The study involved eight sessions, six home visits and two telephone contacts by occupational therapists over four months. Caregivers implemented the prescribed activity plans and then reported the amount of time their relative spent in each activity and the perceived benefits.
Patient and caregiver outcomes were measured after participation in TAP. Patients who engaged in activities set out in their plans showed a reduction in the occurrence of behaviors such as agitation and argumentativeness. Caregivers benefited from participation in the study, too. They reported high confidence in implementing the activity plans and were less frustrated by their loved ones' behavioral symptoms. Caregivers also reported fewer hours performing tasks for patients, indicating that their family members were able to retain more independence and feel more engaged in the world around them2. To quote the study's authors, "TAP represents an intervention that resonates with the most profound concerns of families -- that of meaningfully engaging individuals with dementia, preserving their quality of life and managing challenging behaviors."
At the Visiting Nurse Service of New York, we have a special nine-week program for family caregivers of dementia patients in which TAP concepts are brought to life in the home.
Janice is a 62-year-old daughter caring for her mother Bernice, who has a diagnosis of Alzheimer's disease. Bernice's condition has been rapidly deteriorating for the past year, and Janice was finding it extremely difficult to manage her behavior, especially the increasing agitation and restlessness. Bernice went back and forth between "checking out -- giving me no response whatsoever for hours at a time," said Janice, "and trying to pick a fight or argue with me or start pacing the house nervously, as if she didn't know what to do with herself."
Bernice's home care nurse recognized that Bernice was distressed and Janice was at the end of her rope. "She spent a great of time talking with me, asking me what kinds of things my mother liked to do when she was younger. I showed her all the beautiful scarves and sweaters my mother knitted, and the nurse came up with the idea of getting her knitting again."
Though Bernice can't follow a pattern, and most of what she makes now is suitable only to be pulled apart and re-started, she spends time every morning rolling skeins of yarn and knitting. "It has given me several hours every day to re-group and get stuff done around the house," marvels Janice. Clearly, drawing on experiences and skills from Bernice's past helps relax her and "is worth every penny I spend on yarn!" says Janice.
Involving dementia patients in a tailored activity program based on previous interests and skills is just one way we at VNSNY support family caregivers like Janice. To learn more about programs for dementia patients and their caregivers, please visit the Alzheimer's education section of our website. Our representatives can talk with caregivers about whether a family member is eligible for home care services and make referrals to community resources that provide help for dementia care.
Have you discovered strategies for coping with caregiver stress, or for helping life flow more smoothly for a dementia sufferer?
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1 "The Tailored Activity Program to Reduce Behavioral Symptoms in Individuals With Dementia: Feasibility, Acceptability, and Replication Potential," The Gerontologist, Vol. 49, No. 3, 428-439.
2"Tailored Activity Program (TAP) Minimizes Disruptive Behaviors In Dementia Patients Living at Home and Caregiver Burden," by Bob DeMarco, www.alzheimersreadingroom.com, June 14, 2010.