Small Steps for Caregivers Can Yield Great Strides in Alzheimer's Care

Almost every week, or every month, we hear the latest news about possible breakthroughs created by pioneering medical research into the causes and possible treatments of Alzheimer's disease.
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Almost every week, or every month, we hear the latest news about possible breakthroughs created by pioneering medical research into the causes and possible treatments of Alzheimer's disease. This is encouraging news for American society, in which 5.3 million people--and their families--struggle every day with this devastating affliction.

But this attention to potential cutting-edge discoveries of science must not distract us from another mission that I believe is equally or even more important: developing a national model of care that would provide greater support for the millions more family caregivers whose loved ones will be struck by dementia in coming decades. I believe we can reduce the family dramas that are now being played out painfully and privately. At the same time, we can help families create better memories that they can look back on years later and remember their loved one for who they were - a caring brother, sister, mother, father, grandfather or grandmother who was a critical part of the family.

In roughly 30 years of working with Alzheimer's patients and families, I have come to realize that what seems obvious can also be profound: if we paid just a moderate amount of attention to family caregivers, and got just a modest improvement in patient care, we would have a huge impact on countless lives.

Our "Model of Care" at the Banner Alzheimer's Institute employs multidisciplinary teams of doctors, nurses, therapists, nurse assistants and social workers to work with patients and their families. We have come to the realization that perhaps 80 percent of what caregivers really need is not "medical care," but rather the things that are quasi-medical or even non-medical. We have now taken our years of experience and developed a "Dementia Care Initiative" that we believe can be used in the primary care setting to aid clinicians in their care of dementia patients.

When a person initially receives an Alzheimer's diagnosis, their families and caregivers face a seemingly endless ordeal of difficult obstacles and hard questions. The Dementia Care Initiative can help primary care providers work with patients and families to make understanding and managing this disease easier. First of all, the materials we provide help primary care providers pinpoint the severity of the illness. Then our model uses three different care paths for mild, moderate and advanced Alzheimer's. These paths are structured checklists, carefully tailored to the needs of the patient and caregiver at each progressive stage of the disease.

Once the clinician establishes proper medical treatment and adjusts medications (we often find patients are over-medicated, which can endanger their safety), the focus can shift to include caregiver support and education to help caregivers make the needed psychological adjustments to the patient's--and the caregiver's--new reality.

Initially, the care team helps them find the best possible answers to seemingly mundane but, in fact, crucial questions. In mild cases, families want to know about their loved one's capabilities and needs: How do we handle legal, financial and medical power of attorney? What about driving? What about cooking meals? Diet? Exercise? Social and intellectual stimulation ? What about maintaining quality in day-to-day life, while assuring safety? What community resources are available to us?

As the disease reaches moderate and advanced stages, clinicians are equipped to tackle more difficult questions: How do you cope with the constant frustration of dealing with the patient's increasing memory loss? How do you cope with paranoia and delusions? How do I help with bathing, grooming, and toileting? How do we explain what's happening to the increasingly confused loved one? How do we learn to communicate with each other in a totally different way? How and when do we come to grips with the question of whether the patient can stay in the home? And through all this, how do I save my own life as a caregiver?

Inevitably, in advanced stages, clinicians help the families come to grips with the existential questions that confront them. How do we talk about palliative care and end-of-life issues? How do we talk about our grief? How do we somehow find a way to make this family drama a story of health and success, rather than disease and failure?

These are profound questions with no easy answers. But addressing these big challenges rather than ignoring them makes a huge difference. Just listening to their non-medical concerns is a great gift for families who have been feeling ignored and adrift. Families and caregivers have their spirits greatly lifted to sense that their loved one is not just being written off as old, demented and hopeless. And this attitudinal shift can make a difference in outcomes for both patient and caregiver.

We are testing our Dementia Care Initiative in a pilot program that we are launching at two primary care clinics, one in an urban setting in Phoenix and the other in a rural area, with a combined patient population of 25,000 people. We are going to study, collect data, and refine how it's working, and we plan to extend it to a far greater population within our Banner Health system. We are confident that this model can do a great deal to help patients and families, while we all await the next medical breakthrough.