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Dementia with Dignity

Wellness – Awareness

May 18, 2021

Patti Wick joined us for a powerful yet sensitive conversation about managing the effects of dementia, after a loved one is diagnosed. Patti shared data as well as lived wisdom that can help us to start over our thinking about dementia itself and start over our approach with loved ones, so we can have caring, positive and dignified interactions with those who have been diagnosed.

Patti took the time to note that she is not a medical expert. She is sharing her personal story and what she learned along the way.

Patti’s Story

She first introduced us to two pivotal women – her mom, Doris, and her mother-in-law, Fern – who catalyzed Patti’s quest to learn about and understand dementia. Doris and Fern received a dementia diagnosis within one year of each other, and they both managed it for approximately eleven years. They even lived in the same memory care community together.

Once she learned of the diagnosis, a myriad of urgent questions emerged, along with a sense of relief for an explanation of certain behaviors that she had observed over the past 3 to 5 years.

The diagnosis was not only frightening for her mother and mother-in-law; it also deeply affected family and friends. The whole family received the diagnosis.

Patti connected with the Alzheimer’s Association, and they trained her to lead a support group for family and friends of those with dementia. For six years, that group sustained her, and she was able to learn alongside others who were on a similar path.

Understanding & Learning about Dementia

Dementia is an umbrella term for loss of memory and other thinking abilities severe enough to interfere with daily life.

It does not mean that forgetting your keys or where you parked your car is an indicator of dementia. 

Dementia, as an umbrella term, includes: Alzheimer’s, Lewy body dementia, vascular dementia, frontotemporal dementia, and others, like Parkinson’s & Huntington’s. You can have one type of dementia or a combination of multiple types. All of these are diseases of the brain, and symptoms get progressively worse with time. Each dementia affects the brain differently because they all have different characteristics.

Additionally, If you’ve met someone with dementia, then you’ve met just one person with dementia. This disease manifests itself differently because everyone is an individual with vastly different life experiences, medical histories, and personalities.

Facts About Alzheimer’s 

  1. More than 6 million Americans are living with Alzheimer’s
  2. 1 in 3 seniors dies with Alzheimer’s or another form of dementia
  3. It kills more than breast cancer and prostate cancer combined
  4. ⅔ of Americans with Alzheimer’s are women
  5. Older Black Americans are twice as likely to have Alzheimer’s as Caucasians, and Hispanic Americans are 1.5x as likely. Black Americans and Hispanic Americans are more likely to have Alzheimer’s but less likely to be diagnosed
  6. Changes in causes of death 2000-2019: breast cancer – +1.1%, prostate cancer +1.8%, heart disease -7.3%, stroke -10.5%, HIV -65.2%, Alzheimer’s +145.2%

Alzheimer’s is thought to begin 20 years before any symptoms arise. There is no cure at this time.

The Stigma Attached to Dementia

Aging and age-related decline are topics that are largely avoided in American culture. Societally, we tend to segregate and reject older people, while by contrast, other cultures embrace and revere the elderly, for the accrued wisdom and experience they possess.

Our culture particularly esteems cognitive functioning, often equating intellect with humanity, so it is especially painful to have a disease of the brain, as it calls into question the very value you possess as a human being.

This stigma is not intentional. As individuals situated within a specific culture and its values, we often internalize negative stereotypes about aging that we’ve been subtly and explicitly inundated with throughout our lives. We can end up believing those negative stereotypes about ourselves, as having the time to examine or question those stigmas is itself a luxury, and engaging in this reflection is challenging. So, we grow older; fearing decline, disabilities and a dependence on others. We fear death. We fear dementia. 

As there is such a stigma, those with dementia feel a sense of shame and often try to keep their symptoms a secret for as long as possible – so the number of people with dementia may be even greater than reported. This stigma prevents friends, families, and the patient from getting the diagnosis and care that they deserve. 

Often, we don’t know how to behave around someone who has dementia. They make us uncomfortable, but, ultimately, the onus is on us to release our bias and remove it from our interactions with loved ones who have been diagnosed with this disease.

We need to connect with them in a respectful and dignified way, which honors both our own humanity, and more importantly, theirs. This connection, which often harbors emotional challenges, requires tenacity, flexibility, and (as always) a sense of humor.

Strategies for Positive Interactions

  1. Connect with the Alzheimer’s Association

This organization provides advice, support and help – alz.org.

  1. Engage in Self-Reflection

An interaction might be heartbreaking and frustrating, but ultimately, you want to provide loving support for your family member or friend. 

Ask yourself –  If someone has brain damage, and you don’t, which of you can change your behavior? 

  1. Focus on What They CAN Do

It’s easy and natural to notice and fixate on what loved ones can no longer do. Instead, reframe your thinking and train yourself to note all the wonderful things that they can still do. 

  1. Keep In Mind – This Person Can Still Feel Deeply

Even if communication skills are limited or cognition is impaired, they will still internalize what you say and the tenor of your interactions. Your presence and words still have a profound impact and can potentially linger for a long time. 

  1. Think About Your Language

Avoid asking questions, such as: “Do you remember?” or “What did you do yesterday?” These questions are part of our every day, casual conversation but can be problematic when talking with someone who has dementia.

  1. Meet Them In Their Reality

They may be going through a phase where they are in their 20s or taking care of children. You cannot bring them to where you are – you must go to where they are.

  1. There Will Still Be Many Moments of Love, Joy & Laughter 

Small things can make a big difference. Keep in mind what your loved one enjoys and try to incorporate it into your time together. A small piece of chocolate can inspire bliss. Music can have a transportive effect.

  1. Provide Connections and Purpose

Intergenerational partnerships are an excellent opportunity to create a sense of purpose and connect with other people. Those with dementia can read with a first grader or listen to their favorite music with a high school student. These interactions provide endless benefits for each partner.

  1. Be Present

With dementia, the present is all that matters. 

Culturally, there is a burgeoning value on living in the moment, mindfulness, and being present. This need and ability to be present is most pointed and urgent when with those who have dementia. Take the opportunity to just be alongside them. Time is precious.

Preventative Measures 

The greatest risk factor for dementia is age, followed by genetics and family history. We all inevitably age, but there are ways to take care of yourself that can help you to move in the right direction. 

Overall, take care of your body. Be mindful of your diet, and try to make healthy, nourishing choices. Stay physically active. Exercise has numerous benefits for mind and body. Also, prioritize getting sufficient sleep every night.

As always, it is important to remain mentlaly and socially active throughout your life. Connections with other people are essential and irreplaceable. A sense of community provides you with acceptance and a sense of purpose, profoundly impacting your overall well-being.

Contribute to A Cure

On the Walk to End Alzheimer’s, Patti was the 17th highest fundraiser for the Alzheimer’s Association.

She believes deeply that now is the time to push for funding awareness, research, and interventions that bring us a cure for dementia. 

If you would like to donate, please click on this link.

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