Journeying with Compassion: Person-Centered Care for Dementia
We’ve certainly discussed person-centered care before. Also known as person-focused care, it’s a care philosophy that empowers the individual(s) at the center of the treatment and compassion required in the aging process. That is, your loved one – in good health or bad.
Person-centered care for dementia is particularly important due to the regressive and terminal nature of the disease. Here’s an unfortunate reality for nearly 600,000 people here in Florida who live with Alzheimer’s or another form of dementia: dementia has a 100 percent mortality rate. While most die from secondary conditions, primary symptoms of dementia set the stage for a slow and steady path to end-of-life.
As we embark on the challenging journey of advancing dementia, person-centered care is a guiding light that empowers both individuals and their care partners. Here we explore the core of person-centered care for dementia, a philosophy tailored to recognize unique needs of everyone involved.
How to Factor Person-Centered Care for Dementia in a Strong Plan
Meet “Anna,” a resilient soul facing the challenges of late-stage Alzheimer’s. She also has a secondary dementia diagnosis of primary progressive aphasia, which began impacting her speech and comprehension nearly 10 years ago. Anna is an archetype of thousands of individuals I’ve assisted as a Florida Board-certified Patient Advocate and professional life-care planner.
Since early stages, Anna refused to be labeled as a “sufferer.” This philosophy acknowledges the significance of language. Anna is not her disease. Anna simply lives with the disease, embracing life on her own terms, even in the face of late-stage memory and cognitive challenges.
So let’s first unpack person-focused language in Alzheimer’s and dementia care.
Person-Centered Care & Language: A Compassionate Approach
It’s interesting how language is such a powerful focal point of person-focused care. Words matter. Negative labels undermine dignity. Some people – and even medical professionals – don’t know they’re running afoul of conventional decency.
When you’re considering years of dementia care from early stages to the death transition, the least your loved one’s professional and family care partners can do is address the individual appropriately and compassionately. Here are some examples:
‘Caregiver’ vs. ‘Care Partner’
Late-stage dementia care embraces the shift from “caregiver” to “care partner,” reflecting a more equal and respectful relationship. It emphasizes that care is a collaborative effort, where everyone involved plays a crucial role, fostering partnership over dependency.
‘Resident’ vs. ‘Patient’
In person-centered language, an individual is referred to as a resident, someone living in a place, not merely a patient who is dependent on care. The power of words extends to the reframing of labels like “falls risk” to “a person who may fall.” Do you see how an easy change alters the perception from defining someone by their condition to a more compassionate expression of vulnerability?
‘Prefers Not To’ vs. ‘Non-Compliant’
Preference and autonomy must be honored. In end-stage dementia, your loved one will no longer be able to consistently verbalize their needs and wishes. This is where a strong life-care plan factors personal preferences while your loved one is still able to advocate for themselves. Earlier in the planning process, they’ll be able to express:
- Preference for one activity over another
- Preference for (or against) pain medications or antipsychotic treatments
- Preference for cultural & spiritual necessities
- Preference for (or against) do-not-resuscitate (DNR) orders
“Prefers not to” replaces the judgmental term “non-compliant,” recognizing that autonomy persists even in the face of cognitive challenges. It’s not the individual’s job to comply with orders. It’s on care partners and professionals entrusted with their care to comply with your loved one.
‘Home’ vs. ‘Facility’
Person-centered care for dementia also encompasses institutional labels. A care setting becomes a “home,” a place of comfort and healing, erasing the clinical connotations of the term “facility.”
Prisons are facilities. Locations of skilled medical care are homes.
Empowering Decision-Making, Individuality & Autonomy in Dementia Care
Now, we turn to decision-making. Consider this anecdote of “Jerry,” another archetype of many men living with dementia for whom I’ve served as Patient Advocate. For the sake of our narrative, Jerry is in a nursing home battling the side effects of medications.
Person-centered care empowers him to direct his treatment, urging healthcare professionals to explore alternatives. In late-stage dementia, the narrative shifts from a traditional approach to one that respects the autonomy of the individual in making medical decisions. And when Jerry no longer has the capacity to advocate for himself, the appropriate care partner(s) will make decisions aligning with HIS plan.
Family Choices: Honoring Individual Preferences
Let’s say Jerry is married to Rebecca. As his Alzheimer’s progressed to mid-stages, their plan called for the transition to the nursing home. Rebecca is otherwise healthy and doesn’t require that level of care, but these two lovebirds choose to remain together.
Despite disagreements from others, person-centered care for dementia acknowledges and honors their choice. It emphasizes that each person, even in the midst of declining capacities, has the right to guide their own care journey.
In most cases, care decisions must be made on your loved one’s behalf in the end. A strong life-care plan ensures the chosen loved one has the authority – backed by well-prepared legal documents under the guidance of a Patient Advocate and a licensed attorney – to do so.
Building the Circle of Support
Person-focused principles are not merely shifts in philosophies and linguistics. Rather, they’re a mobilization of support networks. At its core, it acknowledges that the person living with dementia knows themselves best even if they’re declining.
Dementia care takes a village. So many medical professionals and loved ones are charged with specific supporting roles. Person-centered care places your loved one at the center of the care-partner circle. It ensures care decisions are directed after consideration by the individual, rather than care edicts handed down from on high.
(Helpful hint: as a Patient Advocate here in Clearwater, FL, I help build and guide care-partner teams to provide effective and compassionate care.)
Reversing the Stigma of Aging & Illness
Unfortunately, dementia often carries a negative stigma. It’s not as if individuals choose the disease. In general, people can get uncomfortable around aging and illness. Even if they’re well-intentioned, they may not know what to do or say around persons living with dementia.
Person-centered care flips this narrative on its head, recognizing age and illness as natural human processes – even the advanced stages of dementia. It contributes to reshaping societal attitudes and honoring the reality of the human experience.
Different Strokes for Different Folks: Embracing Cultural & Spiritual Diversity
Person-centered care for dementia celebrates cultural and spiritual diversity. America is the “Great Melting Pot,” and Florida is especially so. As a retirement destination, it brings people from every ethnicity and cultural background. Many view dementia and end-of-life care differently.
Acknowledging that one size doesn’t fit all, person-centered facilitate alternative perspectives and options to honor loved ones in life and in death. It encourages:
- Freedom of religious & cultural expression
- Special rituals, prayers & treatments
- Dietary preferences & restrictions
- Reflection & closure
Person-Centered Care: A Gateway to Better Care, On Your Terms
Person-centered care for dementia recognizes individuals beyond their cognitive decline, restoring power to their hands. By championing this approach, we join the ranks of organizations like Pioneer Network and Eden Alternative, trailblazers in elder culture-change efforts for decades.
At Caregiver Support and Resources, LLC, we are dedicated to exploring every avenue of person-centered care for dementia through Florida Board-certified Patient Advocacy, life-care planning, and more. If you seek guidance in navigating the unique challenges of dementia care, reach out to me at maureen@caregiversupportandresources.com.
