A friend recently said to me, “When my friends learned I had Alzheimer’s, many looked at me as if I had some kind of contagious disease. Then, they just stopped calling or coming around. Don’t they know it isn’t the bloody plague?”

What It’s Not

I’ve spent eight years with people who were in various  stages of Alzheimer’s and other forms of dementia. Although my hospice patients in San Francisco were all in the later stages, I heard painful stories from their families of how people reacted to them when they still could function with some help.

From others who are in the earlier stages, I heard identical stories involving relatives, long-time friends, and close colleagues who drifted away or interacted with them as if they :

-Stepped back into their childhood

-Possessed the mind of a developmentally delayed child.

-Or became psychotic

None of these are true, yet as a society, we treat those with dementia as if at least one of these misconceptions was the gospel.

The Harm We Cause
When we act out of ignorance, we may unintentionally cause immense harm to those who are struggling with the disease. One person with dementia, who held a Ph.D. in chemistry, no longer would order a meal from a fast-food chain because, according to him, “The server made me feel like a moron” when he couldn’t quickly decide what to order from a board menu containing more than 50 items, with a multitude of combinations.

Changing Identities
As memories are lost and the ability to manage those that remain becomes a struggle, the identities of people with dementia change. We all view ourselves—our identity—by the roles we play, the activities we enjoy, the affiliations we have, the values that structure our lives, our abilities, and relationships. Imagine how your life would be transformed if significant parts of your identify disappeared–sometimes quickly, at other times slowly, and maybe the worse, stealthily.

And It’s not only self-perceptions that create identities, but also how others perceive us. Imagine what it must have been like for that chemist who spent 8 years in graduate school and was involved in the development of life-saving drugs to be afraid of ordering a hamburger from someone who possibly never graduated high school.

Pulling the Sharp Points Close
Life is full of choices. We can run away from those with the disease, either out of ignorance or fear of what we might eventually become, or we can choose to put ourselves in the place of someone with dementia. Tibetans have a saying that if you want to get over the fears in your life–the sharp points–bring them closer, rather than running away.

But, eventually, you won’t be able to run away from Alzheimer’s or other forms of dementia. Statistics say that many of you reading this article will develop dementia. If you’re 60, you have a 1% chance of developing some form of dementia and your risk increases every year until you reach 85 when it levels off to 35%. If you have a parent with early onset Alzheimer’s your chances of developing the disease dramatically increase. And if you don’t know someone who is close to you with Alzheimer’s or other forms of dementia, trust me, you will.

How to Help
In many ways, having dementia it’s like being dropped into a strange country with customs and a language you don’t understand. And just as you’re learning how to maneuver your way, something changes and you have to start all over again. And nobody is there to provide you with a GPS for getting out.

So how would you react if was your spouse, your parent or a friend who had dementia? Instead of providing lists of “shouldisms” and going into the specifics of Alzheimer’s and dementia (see the links above), I thought I’d just suggest some things to consider the next time you interact with a person who has or you suspect has dementia.

Be Patient. It may take longer to process information

Memories are not willingly lost. There will be things someone with dementia won’t remember, both recent and distant. Not remembering has nothing to do with not trying.

Accept changes. Dementia is progressive. The person’s abilities today may be different tomorrow.

Offer help to the person. There are few things more frightening then being disorientated, such as being a few blocks away from your house and not knowing how to get home. When you see someone who is obviously confused, don’t be afraid to offer help. The worse that happens is they say “No thank you.” The best that happens is you’ll provide unimaginable comfort to another human being.

Offer Help to the Caregiver. Unless someone has been a long-term caregiver, they have no idea of the effort it takes. Offer to help. Anything will be appreciated. Knowing that people care is a blessing to the person receiving the offer, and as my mother would say a “mitzvah” to the person making the offer.

You live in different worlds. As with any chronic or terminal disease, almost everything is seen through the perceptual filters of the disease, from noises to the frustrated looks of fast food cashiers.

Be Compassionate. Imagine the person with dementia is your parent who you love dearly. How would you want other people to interact with him or her and even more importantly, what would you want them to feel after the interaction?

Leave Them With the Best You Have to Offer
Yes, the person you once knew as gregarious will eventually withdraw inward to the point where you may not be able to connect with them. But that may be years away. Enjoy their presence while you still can and offer them the support and compassion you would want if it was you who were slowly moving on a one-way road to a strange, structureless place.

We don’t know what the person with dementia takes with them to that place we’re not allowed to enter. But doesn’t it make sense to give them memories that are pleasant rather than ones that aren’t?

(to read Of Course You Remember, a poem related to this article, press here.)

34 Responses

  1. Damiano de Sano Iocovozzi MSN FNP CNS

    Dear Stan, What a refreshing article you sent! In our disconnected, fast & furious day-to-day, it is nice to see that people like you live a life of mitzvah, connection & good will. We run so fast now, bracing ourselves from the latest pieces of bad news, shock & fear, moving with the speed of sound without a destination in mind. Most forget about the connection & destination of our lives, how we are agents of change, even in the smallest ways. Your patient with Alzheimer’s has more in common with the other stigmatized illnesses like cancer. Most humans run away when it’s not so happy-clappy, upbeat or meaningful. You are a Mensch in every sense of the word. Thanks for a wonderful commentary, Stan.

    Reply
  2. Sylvia McGrath

    I am in my late sixties, and for the past 16 years I have been the main caregiver for my mother who has Alzheimer’s. Unfortunately because I got sick I had to place my mother in a nursing home, it is something I really regretted at the time. She nearly burnt down the house and her on safety was at risk. However, she has been in a the home now for seven years. At the time I was upset, as I had always promised my father before he died and myself that I would always look after her. A special friend who had also looked after her own mother said that when the time was right I would know, and not to regret my decision.

    Thank you for your wonderful article, it really brought back memories of the struggle she had in the beginning. She is now 93 years old still living in the nursing home which turned out to be the best thing for her. She is cared for in way I never could with around the clock help. My sister and I visit her every week. She remembers us both and pictures of my father and us when we were small.

    Warmets regards,
    Sylvia McGrath.

    Reply
    • Stan Goldberg

      Thanks for your kind words Sylvia.

      I think one thing that people unknowingly do to themselves is make commitments early in the caregiving process that cause an amazing amount of guilt, similar to your early regrets about placing your mother in a home. But as you realized, early convictions that are unequivocal may result in the poorest solution for everyone. I encourage long-term caregivers to begin this life-altering process by understanding we don’t have the foggiest idea of what tomorrow will bring.

      Reply
  3. Susan Baxter

    Hi Stan. I am new here, and wanted to tell you that the above hit home. My father is in an assisted living/nursing home, and other than my brother and his family, and my husband and I, my father has no friends any longer. A few will call me and ask how he’s doing, but he isn’t contagious. He may repeat himself, or forget what he was talking about, but he’s still the same person. He is a mensch. I know you are aware of the meaning, but to those who aren’t, a good man.
    Time to go read that poem.
    Susan

    Reply
  4. Carol Newman

    Good article as usual! A good friend, funny and bright, developed the disease in her fifties and died in her sixties. Saddest thing I ever saw. I must say, you’re definitely doing your part to make this world a better place.

    Best,
    Carol Newman

    Reply
  5. Barb Estinson

    Hi Stan, Your article is so timely. I am in Texas, making one of my regular visits to my mom, who has dementia at age 95. She lives in a wonderful small assisted living home, my brother and sister in law live nearby and visit her several times a week, and I come to town and visit her several times a year. Even with these good arrangements, she is lonely and gets scared and frustrated. Your article helps me to keep clear about my responses to her.

    Thanks,
    Barb

    Reply
    • Stan Goldberg

      Hi Barb,

      I’m glad that you found my article helpful. I’ve found that not only with dementia, but most chronic and terminal illnesses, people don’t know how to interact, even with loved ones. That was the impetus to write my next book: Leaning Into Sharp Points, which will be available in March, 2012.

      Reply
  6. Laura Bramly

    Hi Stan: Great article! Can I post this on the inaugural version of the I CAN! I WILL! stand up and speak out about dementia web site? It will be a cyber library of awareness-raising information to combat the stigma of dementia. It’s also a place for people to tell their stories: people with dementia, care partners, health professionals, volunteers, Alzheimer’s Associations, long term care staff and more. It should go live in late July. I’m working on this project with Richard Taylor and Alzheimer’s Disease International. Let me know! You can look at my website http://www.mindsetmemory.com for a project update and sample posts. I think your article is perfect for the site.

    Reply
    • Stan Goldberg

      Hi Laura,

      Thanks for your kind words and I’m honored that you would want to include the article on your website. Feel free to use this one or any others that appear on my site. I think one reason there is such a stigma to Alzheimer’s and other forms of dementia is that people see someone with the disease and fear that they might eventually be the person’s shoes. We fear most what we don’t understand.

      Take Care,
      Stan

      Reply
  7. Luke Vorstermans

    Hi Stan, Another great perspective on this disease. I provided care giving for my mother who had Alzheimer’s. My biggest challenge was managing my father who just could not accept the fact that this disease was not controllable (he was a controller!). Instead of emotional support, he resorted to mental abuse trying to convince her to ‘fight the disease’, do mental exercises, and like the AA approach, have her acknowledge her condition.

    While well meaning, it made a difficult situation much worse. Thankfully she died after suffering a fall so she was spared from further abuse.

    Alzheimer’s is a tragic disease but there is also a sweetness I saw with my mother as she regressed into her childhood memories. I was her gardener, the neighbor, her father, her lover, a stranger, etc. — all kinds of roles you just play out the best you can. It takes skill and love to handle all of the uncertainty. It also has very frustrating days.

    And as many adult children will discover, we are woefully unprepared to handle what some of our parents will go through.

    Thanks for your insights.

    Reply
    • Stan Goldberg

      Hi Luke,

      Thanks for your kind words. As I write more about Alzheimer’s and dementia I’m amazed by the number of people who write back and tell me about their experiences, many of which were similar to yours. Hope the magazine is doing well.

      Take Care,
      Stan

      Reply
  8. Patra Sengsy

    Dear Stan: I am a Volunteer Coordinator for a hospice and find my patient contact volunteers shy away from visiting with our patients that have dementia and Alzheimer’s because “they feel too close to them (they see themselves becoming like the patients)”. I want to use your articles to help volunteers understand the patients and how they can visit with them and be comfortable doing so. I know it is different when people (our volunteers) meet them only as a dementia or Alzheimer patient, because they only meet them when they become our patient. However, this should be good, because they can meet them where they are. Please continue to send me these articles; I need all the assistance I can get.

    Reply
    • Stan Goldberg

      Dear Patra,

      Thank you for your kind words and please feel free to use any of my articles on the website. My new book on caregiving includes a chapter on understanding and servicing the needs of memory impaired patients. Unfortunately, it won’t be available until March 2012.

      There is a wonderful book written by my friend who has early onset Alzheimer’s that I think might be helpful. It’s Me and My Alzheimer’s by Norman McNamara. I’m helping him with his next book which will be published on Amazon.com and should be available within the next few months. As a volunteer, I’m often assigned Alzheimer’s and other dementia patients for the same reason, because many of my fellow volunteers, just as yours feel, uncomfortable with them. After Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers is published, I will be available for workshops.

      You might ask your local Alzheimer’s foundation group to send someone in the early stages of dementia to talk to your volunteers. I find, when you establish a personal connection with someone who has an illness you fear, much of the discomfort is relieved. Hope this helps.

      Take Care,
      Stan

      Reply
  9. Paula Sussman

    Dear Stan,
    This is a wonderful article. My 79 year old mother was officially diagnosed with Alzheimers this past autumn although my sister and I have seen signs for the past 4 or 5 years. There have definitely been challenges in learning about how to deal with her short-term memory issues, judgment problems, etc. but we have lined up a good support system (case manager who our mom really likes and who is great, good geriatrician and are lining up a bookkeeper) which has really helped and is enabling us to be her loving daughters instead of those who have to control her.

    The hardest thing for me, though, is how many of her friends have “abandoned” her. When our father passed away almost 6 years ago, I remember feeling that it was like she was wearing the “scarlet W (widow)” and some of her friends pulled away. Now, with Alzheimers, the “scarlet A” so many friends do not keep up with her. There are a few who are wonderful, who keep in touch with our mom, invite her out to lunch, etc. and see her, not just Alzheimer’s. I wish people would realize that our mom has Alzheimer’s – Alzheimer’s doesn’t have her.

    Thanks again for this article.

    Reply
    • Stan Goldberg

      Hi Paula,

      I know it doesn’t help, but neither you nor your mother are alone in the type of responses people have to Alzheimer’s and their caregivers. I think part of it is that most people really don’t understand the world of someone with Alzheimer’s nor the effort required of loved ones to care for their needs. Sadly, another reason is that people often fear most what they fear–and I think dementia is a biggy. I wish my book on caregiving would be available to you and others that have asked for it. Unfortunately, it won’t be published until March, 2012. Here’s just a few things to remember (possibly you know them already professionals who are involved with your mother have explained it.

      1. One of things people with dementia lose is an internal sense of structure (what allows us to make sense of our world). You can suppliment it by making structure external(, e.g. graphic representations)

      2. As traditional means of communicating needs and frustrations are lost, ones that appear as bizarre behaviors develop. They’re not bizarre, but rather the use of what is available.

      3. There are triggers that can set off distressful behaviors. Always look for correlations before making judgements.

      Take Care,
      Stan

      Reply
  10. Norrms

    Hiya Stan, as an Early onset sufferer of this awful disease who has had (So called ) friends dissapear quicker than “Lightening” when they found out i had dementia at aged 50, i thank you for explaining this in a way thats so easily understandable for all, please accept, with my grateful thanks this poem i wrote four years ago, hope you and others like it, best wishes, Norrms and family xxxxxxxx

    I Haven’t Got the Plague

    As I walked through town today,
    I saw a friendly face,
    But as he walked towards me,
    He then walked past with pace,
    I’m sure that he had seen me, and saw my friendly wave,
    I’ve only got Alzheimer’s, and not Bubonic plague,
    Why do people treat me so, why are they so cruel,
    I’m just the same as them, not some bumbling fool,
    Some are friends I have known, all my working life,
    Who used to chat and laugh, to both me and my wife?
    But now most of them act, as if I don’t exist,
    And all the good times that we had, are just a distant mist,
    I still laugh and I still cry, and still know that they’re there,
    Even when they ignore me, without a fleeting care,
    But at least I know now, who really are my friends,
    And ones that I can trust, right up to the end,
    So those friends I have lost, I say to one and all,
    I hope the dementia demon, never comes to call…

    Norrms

    Reply
    • Stan Goldberg

      Hi Norrms,

      Thanks for sharing your poem and thoughts in this forum. As usual, they cut to the truth of experience. For anyone who doesn’t know Norrms work I would recommend reading his book Me and My Alzheimer’s, a truly, remarkable and personal explanation of what it is like realizing that your cognitive ability and world is slowly leaving you. A must read for anyone who wants to understand Alzheimer’s and other forms of dementia.

      Take care,
      Stan

      Reply
  11. Katharine Dupre

    That was a very interesting article and one especially interesting to me as my mother got a form of dementia after she had a head injury at age 88.

    Reply
  12. Arthur Friesen

    Hello Stan:

    I am new to your site, having gotten your address through my niece in Toronto. Her father is my identical twin brother, who at the age of 56 got Alzheimers (we are almost 65 now). He is in the last stages of Alzheimers, I am totally healthy.

    You are right about people being afraid of people with Alzheimers. The so called “church friends” left in droves when they heard that my brother had Alzheimer’s. The platitudes were there, the “mensch sein” not.

    The family has gone through the process basically alone, and have shown much courage. I honour them very much for this.

    When I have visited, we have tried to concentrate on making good memories together. Even with having an ocean between us, these memories are very important to me as well.

    Again, thank you for a very touching statement.

    Arthur

    Reply
    • Stan Goldberg

      Thanks for your kind words Arthur. I might suggest the support site called Memory People on Facebook. I’ve found that it’s one of the best places for people with Alzheimer’s, their caregivers, and advocates. And hold on to those good memories.

      Take Care,
      Stan

      Reply
  13. Leanne Miller

    Hi Stan,
    Your article is excellent and thoughtful. My 94 year old mother has dementia and I have watched many friends turn away from her. A life long friend of our family has made several insensitive comments about my mom’s mind, including, she’s lost her mind and she’s a little dingy in the head. This frustrates me and I’ve tried to explain the process to this person. Now I email updates to avoid the insensitive remarks. In the beginning stages of my mom’s memory loss, I watched people become uncomfortable, shuffle their feet back and forth waiting to leave. Now, it’s just my husband, me and my daughter, when she is in town, that are there for her. The excuse I’ve heard over and over again from people is,”I want to remember your mom the way she was.” I take old photographs from mom’s younger years and try to repeat stories about what my daughter is doing in her life. This seems to comfort her along with Sinatra songs.
    The other part of my story is another challenge. My mom was financially exploited and left with only a small SS benefit that barely pays her rent. She was actually evicted from an assisted living facility where she had lived for over five years. I had to move her and it was very traumatic for her. The dementia has progressed and I worry about her future care and welfare without the funds to keep her safe and live in dignity. I am hesitant to say too much here because the misappropriation of her funds is being investigated. I know the people who exploited my mom.
    I hope that everyone who reads this will make sure their at risk parent, neighbor or friend is not being financially exploited by strangers, caregivers, and especially family members.
    Thank you for the article, Stan. I will forward it to others.

    Leanne

    Reply
    • Stan Goldberg

      Hi Leanne,

      Thanks for your kind words. Unfortunately, your story is not unique either in terms of how people react to anyone with dementia or taking advantage of them. I always recommend that the legal instruments to protect elders are put in place well before they are needed.

      Take Care,
      Stan

      Reply
  14. MariJoy

    Hi Stan,

    My mom is very cognitively impaired since she had a brain hemorrhage five years ago. Happily, she is still with us, and getting good care at a nearby long-term care facility. I visit her 2-3 times per week, and it’s true, no one understands until they’ve walked in the shoes of a caregiver…so glad I stumbled upon your site, you do a wonderful service by informing folks that people who have these difficulties should not be treated as if they are “untouchables”…thank you,you are a real blessing.

    Reply
    • Stan Goldberg

      Thanks for your kinds words MariJoy. Hopefully things will change as people become more informed about Alzheimer’s and other forms of dementia.

      Take Care,
      Stan

      Reply
  15. Mary Hamilton

    There’s a silver lining even in this . . . one of my dear friends lost her mother to dementia. She was a heavy smoker without any desire to ever quit. When she got worse with her disease, she ran out of cigarettes one day and forgot that she ever smoked. So, see? There’s a little good in everything bad that we experience, isn’t there? Of course, I’m not taking light the seriousness of the disease. Thank you for sharing.

    Reply
  16. Stan Goldberg

    I agree that often there is a role-reversal. The problem I’ve seen is that sometimes an Alzheimer’s caregiver treats their loved one as if they were a child. I’ve found that in many Alzheimer’s patients, all of the emotions of a cognitively intact adult are there, just that they are expressed in ways we may not understand or mislabeled as “childlike.”

    Reply

Leave a Reply

Your email address will not be published.

Sorry for adding Captcha, but the volume of spam requires it *

Subscribe to get updates and receive your ebook -
Family Conflicts During Health Crises: 13 Best Strategies To Prevent Them

About The Author

I am an author of eight books in four languages. LESSONS FOR THE LIVING: STORIES OF FORGIVENESS, GRATITUDE AND COURAGE AT THE END OF LIFE is my memoir of being a bedside hospice volunteer for six years while battling prostate cancer. My next book, LEANING INTO SHARP POINTS: PRACTICAL GUIDANCE AND NURTURING SUPPORT FOR CAREGIVERS will be published in March, 2012 by New World Library and focus on caregiving for loved ones who have a progressive or terminal illness.