How to Provide Excellent Dementia Care for Patients with Dementia—and Their Families

Clinician knowledge about dementia is sometimes limited, regardless of one's extensive education. Familiarity with associated pathologies is one thing, but understanding how to navigate any number of challenges that commonly arise while attempting to optimize quality of life for people living with dementia, and their care partners, poses distinct challenges.

Many of us who serve this population recognize a significant gap in our training. To help address common gaps, Hospice of the Valley (Phoenix, Arizona) created a dementia care program that has been flourishing for twenty years. With our patients and their families serving as our greatest teachers, we’ve noticed over time that specific themes related to dementia caregiving repeatedly emerge. And we're happy to share them, as they hold value for clinicians and family care partners alike.

A multidisciplinary team approach providing education, emotional support, and connections to community resources (e.g., support groups and respite services) makes a powerful, positive difference. The long course of dementia typically involves unpredictable changes that can be frustrating and overwhelming. It’s especially difficult for family and friend care partners who are asked to do perhaps the hardest thing they've ever done, with no preparation and very little support from our health care system.

One of the most common concerns centers around dementia-related behavioral expressions where the person is acting in ways that appear out of character and may even pose risks to safety. We begin by helping care partners interpret these episodes as “expressions of distress,” believing that people with dementia don't scream, bite, kick, or try to escape if they're comfortable in body, mind, and spirit.

Brain changes associated with dementia impair one’s ability to make sense of the world around them. They struggle to decipher incoming stimuli from the environment (including caregivers) and within their own bodies—like pain, hunger, fatigue, and constipation. If the person could tell us what was wrong or achieve comfort themselves, they would. They are doing the best they can. Behaviors serve as communication alerts, particularly as verbal abilities diminish.

The person is not intentionally being “difficult.” Rather, their behavior is a symptom cueing us to pause and ask, "Why is it occurring?" and "What are the possible causes?" The answers are often multifactorial and include biopsychosocial, spiritual, and environmental factors. Performing a symptom analysis is helpful in discovering causes for behavioral triggers (e.g., delirium due to infection) and leads to timely non-pharmacological and pharmacological interventions.

Suppose a certified nursing assistant (CNA) needs to change a soiled brief, moving briskly for efficiency’s sake. The patient struggles to interpret what is happening. They can’t process who that CNA is, what they’re doing, or why. What they do know is that nobody touches them “down there” without their permission, and they ache every time they’re moved. The patient naturally reacts with fear or anger, escalating to verbal and physical aggression. They are labeled “combative” when in reality, they are more accurately exhibiting what we are all hard-wired to be: self-protective.

By simply walking through various scenarios, we can switch the lens from a “combative” person to a human being who is suffering and scared to death. That’s a real “aha” moment for some.

Pain management is a common theme. Often under-recognized and under-treated in people with dementia, pain can show up as a variety of behavioral expressions. As the person loses the ability to identify and report pain, clinicians need to regularly observe for signs of discomfort. Review the patient's history and ask care partners about falls, joint problems, and other possible reasons for pain. Searching for clues takes time but helps pinpoint the reasons for distress. Trial routinely scheduled analgesics rather than as needed to maximize comfort.

It’s polishing what palliative care folks already know and do, appreciating how these nuances can make or break efforts to “comfort, always”.

We can’t provide excellent whole-person dementia care if we don't know the unique individual entrusted to our service. A short biography, less than a page, with a few pearls, can give us a deeper sense of what matters most to the person and help customize approaches and sensory or spiritual preferences, like favorite hymns, for integration into daily experiences.

Dementia causes significant changes in the way a person thinks, but they still have a wide array of emotions available that we can powerfully influence. This is where beautiful possibilities lie to optimize well-being by creating feelings of safety, love, joy, and meaningful connections.

Whole-person care also means periodic re-evaluation of the person as dementia progresses. We may need to recalibrate approaches that appropriately compensate for new deficits and celebrate all their residual abilities.

Care partners are referred to as the invisible second patient, suffering from the intense demands that comprise this role. They often feel they are never doing “enough” and wrestle with ambiguous loss and anticipatory grief. They need our help, too, so ask them how they are doing and share support resources. The care partners know the person with dementia best and are the most important informant we have when their loved one can’t advocate for themselves. We need to make them feel vital to this process.

When we are truly present and willing to meet whatever our patients and their care partners are going through with compassion and skill, we offer perhaps our most therapeutic gifts. Over the years, our patients and families have shared that they benefited immensely from reassurance that they are not alone and that we will walk alongside them, come what may.

There have been countless lessons learned over the past twenty years of providing dementia care at Hospice of the Valley. And these are just a few. Alzheimer's disease and other dementias are diseases of the brain, but not the heart and soul. These domains offer opportunities to reach in and connect to the person beyond the disease. Perhaps this perspective can help us find fresh opportunities to bring comfort in its many forms for all people living with dementia—and those who collaborate in their care.

CAPC provides numerous resources to support clinicians in improving the quality of life for people with dementia, and their caregivers.

• Implementing Best Practices in Dementia Care, a toolkit with twenty-two resources to make the case for improving dementia care within your organization, implementing quality improvement, and training clinicians from all disciplines to better support people living with dementia and their families.
• Best Practices in Dementia Care and Caregiver Support, comprehensive clinical training for improving the quality of care for people with dementia, and their caregivers. This unit includes seven comprehensive courses on topics including communicating effectively about the dementia diagnosis, helping families understand what to expect as dementia progresses, assessing caregiver burden, and more. Clinicians can earn CAPC designation by completing the full unit, to demonstrate expertise in caring for patients with Alzheimer's disease and other dementias.
• Dementia Care Patient & Caregiver Resource Guide, a collaboration with the National Partnership for Healthcare and Hospice Innovation (NPHI), Aliviado Health, and CAPC, is designed to support home care for people living with dementia, providing caregivers with skills and reducing caregiver burden.

Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.