Living Well with Dementia
• 8 min read
- Brief: Life Events
Diagnosis is not the end of your story. Identity, autonomy, and engagement can be included in the next chapters.
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Dementia is a frightening diagnosis.
An estimated half-million people in the United States will receive a dementia diagnosis every year, bringing with it emotional and financial stress. The illness is progressive; it will always turn worse for the individual.
While many focus on dementia’s deficit and decline, a diagnosis is not the end of your story. Understanding how individuals may be able to live—and live well—with a diagnosis can improve quality of life. It may mean the end of one aspect or chapter of your life, such as no longer being able to handle a particular job or enjoy a certain activity. It also means there are blank pages and new chapters of your life story waiting to be written.
Caregivers also have a crucial role, particularly in interpreting a loved one’s behavior. Individuals are still trying to communicate, just in a way we’re not accustomed to. Therefore, it may fall upon caregivers to decipher the message and remind others that the patient is still a person and not just a diagnosis.
To dispel misconceptions and provide professional and personal perspectives on how we can help loved ones with dementia, AMG National Trust presented “Living Well with Dementia: Finding Ways to Honor and Support Well-Being.” The May 14th event featured two leaders in this space from Christian Living Communities (CLC): Angela Allen, Vice President of Clinical Services, and Pam Sullivan, Vice President of Communication and Philanthropy. CLC is an innovative, not-for-profit senior living organization that provides a continuum of care including assisted living, memory support, and skilled nursing.
What is Dementia?
Dementia results from declining function in our brain, our memory, our body, and in our emotions. The illness affects how we think. It alters cognition, which alters how we act and what our body does.
Dementia is more of an umbrella term for separate disease processes that all manifest differently.
“When you know one person with dementia, you know one person with dementia, because it affects us all differently,” Ms. Allen said.
Sidestepping Stigmas
Treatments for the many types of dementia generally revolve around a biomedical view that assumes a causal relation between disease and illness and often emphasizes treatment with medications. Those models are important, Ms. Allen said, though they sometimes overlook the individual.
“What we think when we say ‘I was diagnosed with dementia’ is (that) I need to start planning for not living but leaving everything behind. And that is not the case,” she said. “Some of the common myths are people with dementia cannot make decisions. (They) can make decisions. They’re just not the same decisions.”
Ms. Allen said looking only at the biomedical view can foster several “stigmas, myths and stereotypes” and she explained why those views are not accurate.
- “People with dementia cannot learn or grow”
Studies have found that we can continue to learn and grow amid dementia. - “People with dementia become like children again and we must ‘parent’ our parents”
Individuals don’t revert to childhood. Instead, their emotions may change quickly between being angry or happy. - “People with dementia are fading away”
This does not have to be true. We can find things that bring purpose and meaning to others’ lives.
Adopting only the biomedical view also opens the door to misinterpreting expressions and behavior, misapplying psychiatric labels (such as delusions or hallucinations) to the behavior, and relying on medication for a quick fix rather than considering the possibility that there might be something else happening.
Caregivers should also consider whether the loved one is simply remembering a different age.
Ms. Allen shared how her grandfather, who lived with vascular dementia, had enjoyed long walks, which he no longer was able to do. Eventually, he began banging on doors and yelling. The response from caregivers was to send him back to his room. However, they misinterpreted what he really wanted—which was to go outside as he did when he was younger.
Focus On The Person, Not The Labels
If misinterpreting and applying labels can steal someone’s individuality, then how do we support someone and help them live well with dementia?
Rather than considering that an individual is confused because he or she has dementia, turn the discussion around and say, “I’m confused because I don’t understand what he’s trying to tell me, or she’s trying to tell me,” Ms. Sullivan said.
“We’re going to understand they’ve had a shift in the way they’re experiencing the world around them.”
That’s a paradigm shift that looks instead at the person and what they need to live well with dementia.
Communication Basics
- Our reality is not their reality
- Don’t argue or correct
- Be supportive
- Validate their feelings
- Be curious, ask questions to try and understand
- Be consistent with your answers
- Get on eye level, establish eye contact
- Speak clearly, kindly, and slow down
- Compliment
- Listen and reflect back
- Use a lower voice, not high pitch
- Use meaningful humor to connect
Source: Christian Living Communities
Domains of Well-Being
Looking for care communities and solutions that encompass a list of essential human needs called the “Domains of Well-Being” is important to living well with dementia.
To understand how important these domains can be, Ms. Allen encourages us to consider what would happen in our own lives if we were to lose one or more of them.
Domains of Well-Being
Identity – Being well-known; having personhood; individuality; having history
Connectedness – Belonging; engaged; involved; connected to time, place, and nature
Security – Freedom from doubt, anxiety, or fear; privacy; dignity; respect
Autonomy – Liberty; self-determination, choice, and freedom
Meaning – Significance; heart; hope; value; purpose; sacredness
Growth – Development; enrichment; expanding; evolving
Joy – Happiness; pleasure; delight; contentment; enjoyment
Source: Christian Living Communities
“The benefits of understanding these domains is a focus on the person, not just a diagnosis,” Ms. Allen said. It can help eliminate some reliance on medications. It looks for achievable next steps. It asks: How can we grow? How can we support?
One Conversation At a Time
Several valuable comments were shared by audience members, but one in particular zeroed in on a key question for family and others seeking to help: How do you convince others that this type of person-oriented care is the way to help individuals live well with dementia?
The response, from Ms. Sullivan, is that this is the rallying cry of her organization.
“As you are looking for care and support for your loved ones … have an expectation that they will be treated like this rather than (be) institutionalized.”
Resources
Dementia Action Alliance—daanow.org
Alzheimer’s Association—alz.org
The Eden Alternative—edenalt.org
Christian Living Communities— christianlivingcommunities.org
Source: Christian Living Communities
Mark’s Experience: What’s Crucial to Living Well
For perspective on individuals living well with dementia, and what works and supports them, CLC shared a recent video of Mark Timmons, who was diagnosed with early onset Alzheimer’s in 2008. An accountant, Mr. Timmons sought a diagnosis after noticing that the quality of his work had begun to deteriorate.
He said at first there was a sense of relief that doctors could actually pinpoint the problem. At the same time, the doctors did not offer much hope, telling him to get his affairs in order.
They also told him: “Oh, and by the way, Mr. Timmons, statistics tell us that within eight years … if you’re still with us, you’ll be living in an assisted living type facility.”
In the decade and a half since then, though, “I’m not only living with dementia. I live well with dementia.”
His definition of living well changes each day, Mr. Timmons said, and he focuses on his abilities rather than on his disabilities. While he no longer can work as an accountant, he has found new success and enjoyment with creative endeavors such as photography and poetry.
“I’m not going to paint a picture that every day is positive. I still have my days, still have times within good days where … almost like somebody throwing a light switch, I’ll all of a sudden have trouble finding words, trying to speak or … I’ll struggle with memory.”
“Those are the days when having a strong support system and having a strong circle of friends is something that I really appreciate.”
What specifically provides strength for him?
- Communication that does not leave others guessing what he may need.
- Sense of identity—In every circumstance, it’s the person that matters.
- Feeling connected—Not recognizing faces and self-isolating can lead down the rabbit hole of depression or something worse.
- Being able to make decisions for himself, or at least being included in the process, such as at a doctor’s office. “Don’t talk to my care partner like I’m not in the room. Depending on the degree of symptoms I’m experiencing that day, maybe I’ll need help making a decision, but don’t take that away from me.”
- Opportunities to grow and develop new skills and interests. “We all need to have a purpose in life.”
“What I like to tell people … the diagnosis of dementia isn’t the end of my story. It’s not the end of my life. It’s only the end of a chapter in my book.”
“So, the chapter that was called Mark the Tax Accountant, well, that chapter’s over with … but I turned the page and there’s a blank page waiting for me to start … so there’s the chapter called Mark the Photographer, Mark the Poet, Mark the Advocate, Mark the Speaker.”
“These are all new chapters still waiting to be written.”
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