Reducing the Stigma of Alzheimer’s and Dementia
Cris' mother as a young woman in her nursing uniform and assisting a patient.

Reducing the Stigma of Alzheimer’s and Dementia

May is Asian American and Pacific Islander month and Mental Health Awareness month. And this week happens to be National Nursing Week as well. I am at a crossroads of all these intersections. Many of you following me know that my mom has Alzheimer’s . But I don’t want her to be known for that or remembered for that.?

Yes, she has Alzheimer’s, but she is an amazing mom; wife and admired sister and friend; a dedicated nurse; and inspiring colleague and leader that served patients and the community with compassion and care. She has a million dollar smile that wins hearts and minds and can influence anyone to volunteer their time or sing in the Christmas pageant, or even stay an extra shift. You could ask her to do anything, and she was always willing to help. She is a people pleaser and often felt like people, inadvertently, didn’t value her worth. She is a wonderful grandma and mother-in-law. She is a breast cancer survivor. She is a Filipina American. She is strong and she is resilient. And she is the most courageous and loving person I know.?

Often, people with Alzheimer’s or dementia get dismissed. They are recognized for all the things they are at that moment, and not for the person that they are because this cruel disease doesn’t allow them to be.?

My heart is heavy as I share that mom was called a ‘bag lady’ at her senior community, as she likes to collect things and carry them around on her walker. I’ve seen caregivers and residents who are fortunate enough to not have dementia roll their eyes and dismiss what she is saying because she repeats herself every few minutes or becomes confused with where she is. I am angry and sad that my incredible mom and all her accomplishments have been forgotten, the way that Alzheimer’s does that to the six million Americans that suffer from this horrible disease.?

More than 6 million Americans are living with Alzheimer's. By 2050, this number is projected to rise to nearly 13 million.(1)

People living with Alzheimer’s or other forms of dementia want to be understood, respected, supported, and feel confident about being able to participate and have purpose. According to the World Health Organization, the number of people with dementia is projected to reach 82 million by 2030 and 152 million by 2050 worldwide.(2) It’s imperative that we promote a better understanding of Alzheimer’s and dementia, to reduce the stigma and discrimination and foster greater inclusion and integration to support people like my mom, to have a greater sense of belonging in their community, and not be treated like yesterday’s trash.?

"20 Things I Would Want If I Got Dementia" by Rachael Wonderlin, MS :

  • If I get dementia, I want my friends and family to embrace my reality.?
  • If I get dementia and I think my parents are still alive, or if I think we’re visiting them for dinner, let me believe those things. I’ll be much happier for it.??If I get dementia, don’t argue with me about what is true for me versus what is true for you.?
  • If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.?
  • If I get dementia and I can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.?
  • If I get dementia and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.?
  • If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.?
  • If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.?
  • If I get dementia, ask me to tell you a story from my past.?
  • If I get dementia and I become agitated, take the time to figure out what is bothering me.?
  • If I get dementia, I want you to treat me the way that you would want to be treated.?
  • If I get dementia, make sure that there are plenty of snacks for me in the house. Even now, if I don’t eat, I get angry, and if I have dementia, I may have trouble explaining what I need.?
  • If I get dementia, don’t talk about me as if I’m not in the room.?
  • If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you or choose a great new place for me to live.?
  • If I get dementia, and I live in assisted living or a memory care community, please visit me often.?
  • If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.?
  • If I get dementia, make sure I always have my favorite music playing.?
  • If I get dementia and I like to pick up items and carry them around, help me return those items to their original place.?
  • If I get dementia, don’t exclude me from parties and family gatherings.?
  • If I get dementia, know that I still like receiving hugs or handshakes.?
  • If I get dementia, remember that I am still the person you know and love.?

In the spirit of community and in support of mental health, I encourage you to comment or share your own stories that honor someone you know and love who is fighting or who we have lost to Alzheimer’s or dementia. We are not alone. They are not alone.

#FidelityAssociate #alzheimers #caregivers ?

?____________________________

(1) Alzheimer’s Association, 2022.

(2) World Health Organization, 'Mental Health of Older Adults,' December 12, 2017.

Bronacha Taft

Talent Acquisition Partner at Fidelity Investments

1 年

I lost my mother to Alzheimer’s in May 2022 after 10-year battle. I miss her smile, the chats we use to have and everything about her. ??

Joshua Lopez, CFP?

Communications Consultant, Fidelity Investments

1 年

My grandmother, Velta Bekeris, was displaced from her home in Latvia during World War II. She supported her family financially by cleaning houses and raised my mom and aunt in Long Island, NY. Her entire life was marked by uncommon generosity and putting others before herself. She started living with us when I was in high school and over time developed Alzheimer's disease. I remember every time I came home from school she would give me a GIGANTIC hug and ask me what snack I would like her to make me. One of the most profound moments we had the chance to share during this season was towards the final weeks of her life. She had a couple of minutes where she remembered who I was as her grandson, and looked at me with such deep love and said "I can't remember anything, I am ready to go home and see Jesus". This memory has strengthened my faith in ways nothing else has or frankly could. I miss you grandma and believe down to my DNA that we will see each other again in the throne room of heaven living in perfect, unfettered community with the full expression of Yahweh. #fidelityassociate

Rachael Wonderlin, MS

Dementia Senior Living Consultant & Brand Developer at Dementia By Day | 3x Johns Hopkins Press Author | Fractional Dementia Care Corporate Director | Wrote "16 Things I'd Want If I Got Dementia"

1 年

So happy to help!

Elizabeth Shulman

Social Media Manager at Fidelity Investments

1 年

You carry that million dollar smile, Cris! Sending support ??

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