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person-focused care

person-centered care

5 Ways Person-Centered Care Improves Health & Happiness

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It really grinds Brian’s gears. I’m not kidding. Being labeled an Alzheimer’s “sufferer,” or “disabled,” or even somebody’s “patient” makes my life partner/care partner so angry. It’s easy to understand why. We prefer person-centered care and language because anything else automatically places the individual at a disadvantage.

A disadvantage? How?

Let’s say your mother lives with dementia. Her condition has worsened the last six months, so she agreed to mobilize part of her life-care plan to move to a memory care home in your community. “It’s for the best,” she says in one of her more lucid moments.

But you begin to hear some things you don’t like. The doctor on staff isn’t listening to her concerns about a certain medication. The nurses don’t call your mother by her first name, Beth, instead referring to her as “the Lewy-body dementia in 26A.” 

“The doctor still has her taking that medicine? It’s only making her worse,” you complain to the administrator. “And she’s not even being labeled as a person anymore? She’s Beth, and she’s a person first!” As Brian always always says, “I may have Alzheimer’s, but Alzheimer’s does not have me.” But person-centered care and language isn’t only for persons living with dementia. Any individual – whether living with a terminal illness or aging in good health – can have better health and happiness with some careful attention to how realities are discussed and care decisions made.

The Benefits of Person-Centered Care & Language

Person-centered care (also called person-focused or person-directed care) empowers the individual at the center of care. Health care systems for years had a top-down approach. There was a health professional in charge of decision-making in what was supposed to be a patient’s best interest. 

People only received care. People were caregivers. Our loved ones were defined by their diagnoses and medical needs. Intended or not, such thinking gave power over the individual in both word and deed.

Philosophies then began to change – for the better. Why shouldn’t a person direct their own care? (They know their bodies best, after all.) Why should someone be called a caregiver? (More accurately, they’re partnering in and assisting with a loved one’s care.) Words and care models matter, and our good friends at the Pioneer Network and Eden Alternative have led these culture-change efforts for decades. 

Here’s an easy breakdown of how person-focused care and language works.

1. Speaking the Language of Compassion

Words are our most powerful weapons. Their very presence can hurt or heal – your choice. Person-focused language is one of compassion. It prefers “care partner” to “caregiver,” “resident” to “patient,” “person with different abilities” to “disabled,” and so much more.

As you can see, it removes labels and focuses on the strengths individuals do have rather than weaknesses. To Brian’s point, he’s not a “sufferer of Alzheimer’s and vascular dementia.” He may struggle, but he’s not defined by that struggle. He’s Brian, and he’s defined by his life – everything he’s done, victories and defeats, love and loss, family and friends. Likewise, your loved one is entitled to care verbiage that honors their humanity and spirit. 

Even the places they receive care are subject to person-centered language. “Facility” is such a common term. But the Eden Alternative asks, “Why are we still dropping the F-bomb?” Wouldn’t you feel more happy, comfortable and ready to heal at “home”?

2. Giving the Individual a Voice

Medical professionals used to enter a room, make an analysis and render a treatment decision. It was to be followed to the letter. We get it, most medical professionals and teams have years – even decades – of schooling and experience. But what of the individual who lives in that body, knows how it feels and reacts, and the loved ones who also know them best? 

Person-centered care philosophies now understand individuals and their loved ones are the most under-utilized of all health resources. We now have a voice and a choice to help inform the care that’s delivered. If a certain medication or treatment doesn’t work or is too painful, that’s taken into consideration as something to avoid and not simply as a negative side effect.

Sometimes individuals prefer a care routine – a daily regimen of specified care and activities. Others enjoy more latitude to see what each day brings. And with some great life-care planning, person-centered care can give a voice even when the individual can no longer speak for themselves.

3. Involving Loved Ones

We mentioned family and other close loved ones. They know the individual best. They’ve seen the progression of the person’s natural aging or disease, first-hand, sometimes every day for many years. They’ve seen treatments fail or work perfectly. And when a loved one has lost the capacity to advocate for their own needs, family members and close friends are the only ones left to help make decisions.

But it’s not just about care decisions. (Helpful hint: hopefully your loved one has a living will or advance directive to honor wishes.) Sometimes improved health and happiness comes from just having loved ones involved on a regular basis. Seeing a beloved husband, wife, grandson or even favorite neighbor regularly quells feelings of loneliness, helplessness and boredom.

4. Seeking Alternative Approaches

Health care is now a realm of education, consultation and delivery. Person-centered care allows us to hear options and discuss which may be the right approach. When one door closes, it’s on health professionals to uncover alternatives that may be seen as safer and more effective. 

Advances in medical knowledge and technology have virtually eliminated one-size-fits-all care approaches. What works for one may not work for another. No one dictates care beyond the care recipient. 

5. Changing Perceptions

Culture and media have framed many of our perceptions of aging and illness. As you know, these realities are increasingly portrayed as “ugly,” “weak” and “undesirable.” Person-focused care and language counter those attitudes as utter nonsense. Beauty and strength are found in all ages and ability levels. No one’s “ugly” because they’re advancing in years. No one’s “weak” because they’re affected by an illness they didn’t choose.

And as an added bonus, these philosophies also improve health provider outlook. A positive outlook to daily care always leads to less job burnout, greater job satisfaction and lower turnover rates. 

Let’s Build a Plan for Person-Centered Care

Every person has intrinsic value, dignity and character. Person-focused care and language honors each of these – and more. 

Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning, including Board-certified Patient Advocacy, Medicaid Planning & Asset Protection, Referral Services and #WeAreDementiaStrong. We’re happy to guide the process in a caring and compassionate way.

early onset dementia

Early Onset Dementia: Mom Keeps Forgetting My Name

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Your mother readies for the day one morning. You’ve just enjoyed a delicious breakfast. The comforting smell of maple syrup and pancakes lingers in the air, welcome as a family friend.

You’re both excited for a day of, let’s say, perusing yard sales. Your annual spring outing, rooted in tradition and love, is more about spending quality time together than finding little treasures.

Then something happens that’s not so familiar. Mom calls you in the room. “Sarah,” she says, “have you seen my gold bracelet?”

You walk to her room, confused. Your name’s Rebecca, and she’s wearing the bracelet. You’re visibly taken aback as you explain what it seems she should already know. Your mother may even laugh it off. “Oh, silly me,” she says, noticing the bracelet and gesturing toward a few strands of graying hair, as if to justify a “senior moment.”

She’s only in her late 40s. Isn’t it too early for dementia? Forgetfulness happens sometimes to even the healthiest, most cognizant people advancing in years. But Sarah? The bracelet? Something in your mother’s memory slipped, if only for a moment.

The simple answer is, no, it’s not too early. Early onset dementia symptoms may begin in a person’s 40s — or younger. It affects approximately 200,000 of the 6 million Americans living with Alzheimer’s or dementia today.

You See Symptoms of Early Onset Dementia. What’s Next?

With time, instances like these may grow more frequent. Your loved one misplaces your name. His or her day-to-day and minute-to-minute memories begin to draw back with time. Your natural instinct may be to worry, to correct, to fight against the progression of regression in hopes their memories regain their once-strong foothold.

But a great care plan should allow some personal space, perspective and understanding. Here are some strong first steps:

Begin With a Comprehensive Medical Evaluation for Younger Dementia

Self-diagnosis, or a diagnosis by close family and friends, often works contrary to care goals. There are more than 400 different types of dementia. Each has its own definitive characteristics and speed. What’s more, dementia affects each individual differently. Each requires its own special style of care.

You know your loved one well. Memory lapses, slips in reasoning and judgment, and other behavioral and physical changes — especially early in life — may be uncharacteristic. You should first seek the professional opinion of a primary care physician or neurologist. Comprehensive tests can understandably be scary or overwhelming. They typically include a medical exam, cognitive tests, brain imaging and other diagnostics. From these, a doctor has a clearer picture of symptoms and potential causes.

You may learn there’s no medical reason for forgetfulness. A busy mind filled shuffling stressors of work, family and everyday life can be forgiven for missing a beat occasionally. After all, many of those in the average 40-to-55 age range for early onset dementia are at a life stage when work and family responsibilities are most demanding. They’re often reaching the pinnacle of careers, while some also balance being care partners for elders themselves while guiding children through high school and college.

If tests do, however, uncover signs of dementia, you’ll be informed to address those specific symptoms and plan for the future.

Build a Person-Focused Life Care Plan

Early onset dementia still merits a life worth living. Changes in memory over time should have little impact on a person doing the things they love. For many years to come, they may enjoy family meals, hobbies, attending the kids’ concerts and sports events, and everything of the sort.

A life care plan simply spells out how important details will be addressed, as needed. It’s a living, breathing document. Once in writing, it can be updated to include new wishes or care directives. It defines, organizes, prioritizes and mobilizes every aspect of an elder’s care from life through death. These elements may include:

My life partner/care partner, Brian, who lives with Alzheimer’s and vascular dementia, has a wonderful life care plan. It includes everything from enjoying music to donating his brain to science and vital organs for others to live on. It’s about enjoying life’s simple pleasures and helping others after he’s gone.

A life care plan should be person focused. Brian often discusses losing 30 pounds post-diagnosis — only because he would sometimes forget to eat. That’s a pain point, and it may require only a gentle reminder from a care partner about meal times. But a good plan is not only about preparing for and reacting to crises. It should emphasize the development of ongoing relationships with loved ones.

Remember, you’re caring for (and alongside) the person, not the illness.

Build Your Care Partner Team

We prefer the term “care partner.” The term “caregiver” or “care provider” implies a one-way transaction — a person providing the care. Words matter. Even linguistically, the perception of this one-way street disempowers the individual, empowering only the medical professionals and family/friends “seeing to” their care.

Their voice matters!

It’s a partnership between two (or more) people and characterized by mutual cooperation and joint responsibilities. An elder may choose their son, daughter, nephew, neighbor, best friend, doctor, third-cousin-twice-removed, or any other combination for a journey that requires support for everyone involved.

Just as your elder may require help drawing a bath or cooking meals, their care partners may need resources in coordinating activities. A great team has well-defined roles. Perhaps a husband or wife does mealtime, while one of the children does laundry, and a sibling organizes a fun group activity for everyone to enjoy.

Or maybe someone does it all!

There are no strict rules for what a care partner team does or should do. Everyone cooperates for a life worth living!

We Are #DementiaStrong

The path ahead will be hard. But nothing good in life is easy. Just know We Are #DementiaStrong. Let’s work together to make a plan for memory loss while cherishing the memories that remain.

Knowing where you and your loved one stand is the first step to creating a plan for the road ahead. For these decisions and more, Caregiver Support and Resources, LLC helps you to build a plan for today and tomorrow.