You Had Me at Dementia: Empowering Those with Early Onset Disease

You might remember the famous cinematic line, “You had me at hello,” the touching moment where we knew love was instant. My love was also instant for several friends who “had me at dementia.”

As an executive board member of the Dementia Action Alliance (DAA), I am proud to serve with several people who have early onset Alzheimer’s disease. One of the things we advocate for is that people in early stages still have much to offer and we can help them lead a quality life with purpose when we understand this.

Stigmatize / Ostracize

Often as a society we stigmatize those with dementia and disable them.

speak to groups about how the DAA calls this “prescribed disengagement” where even family members believe that life with dementia is not worth living, making the person a social outcast – which in turn cause them to lose hope.

Even physicians fall prey. In a DAA conference call, I heard how one physician answered her colleagues when they asked why she took care of people with dementia, inferring that the disease had no cure and inevitably led to death so why bother in other words. She asked them – do you care for diabetic patients? Do you care for heart disease patients? Of course they answered yes. She replied that those diseases have no cure either yet physicians continue to work to help people with those diseases live a quality life.

In working with and now becoming close friends with several people with early onset, I know their life is worth living. In fact their living is enriching my life. For example, my friend Sandy Halperin and I have frequent Skype calls and he talks about being in the “precious present” and indeed, on the calls we are. Our total focus is on each other and, while Sandy may not remember the context of the call as soon as we disconnect, he knows he felt something special. Those calls with Sandy become truly blessed days in my week.

Don’t Believe Them

Because Sandy is so present on our calls, on the surface you would think he is fine. My other friend Brian LeBlanc first mentioned to me that he actually gets in arguments with people trying to convince them he actually has Alzheimer’s. What a strange ledge to live on – moments of lucidity, moments of utter confusion – and the world does not know which to believe.

As Brian told me: “Being younger than the normal individuals who have Alzheimer’s (65+) people are shocked to hear that someone like me, someone who can still speak fluently, who can still drive on a limited basis and who can still function somewhat independently.”

We Can Empower not Disable

According to the Invisible Disabilities Association,

“People often judge others by what they see and often conclude a person can or cannot do something by the way they look. The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.”

According to the Association, families and caregivers can play a big role in promoting self-esteem and personal worth.
  1. Be a source of encouragement. You can help a person live their life in a meaningful way with hope and social confidence. That gives you the space to hold back and assist as needed when someone is fully present and assist more fully when they are not. Brian speaks of the positives.“I tell people what I do on daily basis to help me get through the day.
  2. Participate with them. Brian likes to stay engaged. “It’s very easy to become sedentary. Stay involved with friends outside of the home at least once a week. It not only gives you a change of scenery but it also allows you stay in touch with individuals you knew before your Alzheimer’s life.”This is not always easy to do. The late Richard Taylor, noting that Alzheimer’s is called The Long Goodbye, told stories of his friends not calling and when he asked, they said we didn’t know what to say. He said, “Well say hello.” Someone with dementia needs a friend like you so jump in. They’re waiting for you to jump in.
  3. Exercise / Play Games with a Friend with Dementia. Exercising the body is extremely important to Brian’s routine. “In order to stay active and engaged, you just be able to be physically healthy. In addition, exercise brings oxygen to the brain which allows you brain healthy. Any type of puzzle, brain games or things to challenge your brain in extremely important. Just because you have brain impairment does not mean you can stop using your brain. Challenge yourself in one way or another each day.” You can be the coach, the mentor that helps Brian and others get motivated each day.
  4. Use a Smartphone to Stay on Track. “Things I was I was able to do . . . cook, program a remote, drive without GPS . . . are no longer easy tasks. I even have to have reminders on my phone to tell me when to eat, when to take medications and when to take a bath.” So Brian uses a smartphone to keep on track. He sets a reminder for appointments, medications, exercise, schedules of individuals in his household, or any other important everyday activities. The alert reminds what to do and when to do it. As a friend, you can help a person stay on track but let them use the abilities that they have assisted by the technology available to them to figure it out for themselves. As Leeza Gibbons said: “Focus on what’s left. Not what’s lost.” When you do you empower the person with dementia to live a full life and in turn your life is being enriched at the same time.

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Tagged with: Alzheimer's disease, dealing with Alzheimer's, dementia

8 thoughts on “You Had Me at Dementia: Empowering Those with Early Onset Disease

  1. Monica Cordero
    January 5, 2017 at 4:14 am

    While the role of families and caregivers in helping people with Alzheimer’s cannot be ignored, the social stigma still remains a hurdle. It is only by raising awareness about dementia that we can truly move towards a society that is more tolerant towards Alzheimer’s sufferers. The efforts of DAA are truly commendable!”

  2. Ancient Mariner
    January 15, 2017 at 3:38 am

    From the caregiver: Early onset dementia would be a pushover if your patient isn’t afflicted with cognitive decline, BPD (borderline personality disorder), Bi-polar disorder while playing the blame game – raging “you’ve been like this for 61 years”!

  3. rich
    January 16, 2017 at 10:48 pm

    I failed my mom miserably, I am so sorry and ashamed

  4. Laura camper
    January 19, 2017 at 8:18 am

    There have been many strides in making this disease known add it crosses all barriers and sectors of life. It does not care about race, economic status, education, or address. It is indeed frightening in a sense. But as long we continue to be vocal and present to demand and effect change for those suffering, we can at least continue one step at a time. Their is hope for these precious ones. They are not forgotten.

  5. Janette Beck
    January 19, 2017 at 5:33 pm

    Im 58 2 yrs ago i was diagnosed with CTE, caused by a traumatic head injury i suffered 13yrs ago. While i am very high functioning now, i am accutely aware of what is to come…. 7mo ago i visited my77yr old mother, who at the time lived alone, blocks from both my younger brother and sister…. both much better off physically and financially than myself.

    After my 5 day visit, i brought Mom home with me, no “plan”, i just knew it was the right thing to do.

    After 7mo Mom has adjusted well, she is getting the correct diagnostics, daily care, and most importantly her maltese. Mom has always been Bi Polar and a bit of a princess, never workef or drove etc. So the day program is really difficult for her to adjust and participate in. All my efforts to find activities that engage her and are brain stimuli are fiercely rejected.

    Moms only interests are tv and shopping, which is difficult for me to take her … she shoplifts. I limit her to groc stores and pharmacy these days.

    Recently i myself was hospitalized with ear infections, sinus infection, uti, anemia, and exhaustion.

    Im now concerned, what may happen to Mom who is physically 100%, if something happrns to me.

    Other siblings are not willing to participate in moms care and live an hour away, anyway. Mom is medi medi … no $

    Any suggestions?

  6. rhonda
    January 20, 2017 at 6:28 am

    All children who have living parents should read this article. My biggest fear is that I will suffer from dementia and my daughter will be impatient and critical. I understand being angry at the disease, but fear the anger will be directed at me instead.

  7. Dana Horn
    January 23, 2017 at 6:52 am

    Janette Beck,

    I went through this with my Mother and had to deal with a Father who didn’t want to admit she needed treatment. Best idea is to go to Doctor with them and talk about the care issues. Doctor can get you in touch with social worker, etc… to help you plan to the next stages of care and assistance for you. Remember this is a draining disease and don’t be afraid to ask for help even now so you can be there for the long haul.

    Blessings!

    Dana

  8. Anne
    January 26, 2017 at 4:40 am

    This is s very positive article. Education is the heart of recognizing what can be helpful to those immersed in this disease.

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