When I am living with Alzheimer disease, which I expect I will be one day, I want to do the things I love to do for as long as possible, and to be offered the opportunity to try new, engaging and enriching activities that will fill the last chapter of my life with joy and happiness. I don’t wish to be labeled or “therapized,” or treated like someone who is less than human, or worse like an object with not more value than a chair.
So please, future care partners, help me to live until I die: interact with me, support me, invite me to grow and learn and to engage life with purpose and meaning and please, please, please don’t stigmatize it by calling it “therapy.” If things keep on as they are, people who live with dementia will soon be getting “food therapy” every time they have a meal! And “sleep therapy” when they go to bed at night or have an afternoon nap. It’s completely ridiculous.
1) Pet therapy
I adored my little cat Pia Roma, who had lived with Mom before she became my treasured housemate. I hope I will have animal companions of some sort near me until I too say goodbye to this place. Taking care of and loving an animal gives people of all ages purpose and joy. Purpose and joy are important. I love to have animals around me; I see no reason to label being with animals “pet therapy” if and when I’m living with dementia.
2) Music therapy
They say music is the universal language. It connects people, speaks to them in special ways, and touches them at their core. I experienced its powerful effects first hand with Mom. Through music, I learned many things and found much joy. While I think I will love to continue to experience music in many forms when I live with dementia, I don’t see why enjoying music should be described as “therapy” simply because my brain is changing.
3) Art therapy
I create art. I’m not a painter or a sculptor or a potter. At least not yet. But I have created and I continue to create multimedia works that bring me and others joy and happiness. I hope that if I ever come to live with dementia that I’m able to continue with the artistic activities I do now. Why should those same activities be labeled “therapy” if I live with dementia? The word therapy has implications I don’t like and I’ll thank you kindly not to use it when I’m living with dementia.
4) Doll therapy
I never played with dolls. Never had children. Not interested, no thanks. But if I did love babies, and playing with dolls as a person living with dementia made me feel wonderful and happy, why would it have to be called “therapy?” Why not just say every human being needs to feel connection, love, purpose, and meaning and enjoying dolls, or stuffed animals or whatever, are other ways of achieving that?
5) Poetry therapy
i love to write and make words rhyme,
so stop the stigma if you please,
just because my brain’s diseased.
It’s writing. It’s poetry. It doesn’t suddenly become “therapy” because one has a changing brain.
6) Exercise therapy
Seriously? Exercise therapy? With a few exceptions, exercise is just plain good for all of us, most of the time, no matter what condition we’re in.
7) Gardening therapy
Ummm. Please. See 6) above.
Come to think of it, when I’m living with dementia, don’t give me any kind of therapy at all. Support me in doing the things I’ve always enjoyed and in exploring new ways of creating purpose and joy in my life. Yes, by all means, do that. But don’t call it “therapy,” because I don’t want to be stigmatized and have labels applied to who I am and what I do when I live with dementia because I will be the person I have always been only in a new, different and equally beautiful way.
This post was originally published on her blog MyAlzheimersStory.com
Hi Susan! I am a student in the AGNG 320 class at the Erickson School of Aging. I really enjoyed your post as it wasn’t a mundane article-like reading. It was engaging, comical and conversation-like which really caught my attention. One of my paternal aunts has dementia and I didn’t find out about it until about a year after her diagnosis. What baffles me most about her situation is that she is able to tell me multifarious life stories from decades ago. Because she is the only person in my family with the condition, I was never too familiar with how to go about communicating with her and engaging in day to day activities. Turns out, activities with her shouldn’t be much different now than they were prior to her diagnosis. I’m sure she enjoys music and dancing just as much as I or anyone else in my family does so yes, why should it be called “therapy” just “because [her] brain is changing.” Furthermore, if we’re going by the dictionary definition of therapy, then most people could use some exercise therapy. Thank you for the insightful and light-hearted post.
Hi, I am a student in the AGNG 320 class at the Erickson School of Aging. I found this post to be very interesting and comical. Unlike most textbooks or informative articles that tell you something about Alzheimer’s, this was more like having a conversation. One of the things that I really enjoyed in this article is the emphasis on what “therapy” is. People seem to like to coin the term “therapy” to anything that they seem will likely help alleviate certain symptoms or bring relief. When you mention things like poetry therapy and exercise therapy as just regular activities that get turned into therapy for kind of useless things, it made sense. Exercise is something that we are advised to do because it is good for our health. Poetry is way that people express themselves through words, and should not be forced as a form of therapy. I think it is important to support those who are going through Alzheimer’s, and let them do what they want to do it and to allow them to do it their way. At the end of the day, it is something they should look forward to do, not something they are forced to do
Young people also suffer for the stigmatization of the word therapy, “1 in 5 young people suffer from a mental illness, and of those teenagers, only 30% will be diagnosed and will be able to receive proper care”. Those are shocking percentages that will only continue to increase if we continue to stigmatize the word ‘therapy’. Therefore, I think that it is okay to use the word ‘therapy’ to describe doing something that brings you joy, relaxation, or a brief mental break from something stressful or tiring that is going on in your life. Among the ideas you have mentioned, we currently have two cats that my loved one enjoys interacting with when he is able to, we go on short walks outside, and we play music on the piano or on old CDs that he will sometimes recognize and sing along to. All of these therapies, or activities, are each wonderful things that bring him back out of his shell that we see though that small spark of recognition in his eyes. He is still the same person, in his new different and beautiful way, but he is not stigmatized because we choose to label an activity as a therapy. That stigmatization comes from others who do not fully understand the implications of the mental illness or disease and create negative projections instead of normalizing and accepting them.
Citation:
Hira, S. (2017, November 11). Why Mental Illness Doesn’t Require A Diagnosis. Retrieved from https://www.theodysseyonline.com/mental-illness-doesnt-require-diagnosis
(Part1/2) Hello, I am an AGNG320 student at the Erickson School of Aging at UMBC. I was initially drawn to your post due to a family member of mine that has Alzheimer’s and wanted to see what more I could do for him. Alzheimer’s is a frustrating disease that is stigmatized and misunderstood by many people; whether it be others not understanding the full implications of the disease, or shying away from the person because they do not know how to “deal” with them. Often, patients with dementia end up not being able to pursue their previous passions for different activities because they aren’t invited, engaged, or remember how to do said activity. As you have reiterated in your blog post, just because a person will participate in an activity they enjoy, does not mean that it is a therapy. However, it appears in your post that you are primarily against the word ‘therapy’ due to the stigmatization of the terminology despite the word having an equal, or even greater amount of positive implications. I think that if the word ‘therapy’ is continued to be viewed as a negative action, less people who are in need of the emotional or mental support will be hesitant and less likely to utilize all the resources that they have available to them. According to research from The Odyssey “1 in 4 American adults need help, but many won’t ask for it [due to] fear of judgement, isolation, and discrimination”.
Hello, I am a student taking AGNG 320 at the Erickson School of Aging and I would like to say that this post put me into a different perspective of how people view a person going through dementia. Although all the “therapies” listed above are things that are enjoyable and beneficial to any person whether or not they have dementia, I wasn’t aware that people were putting the term “therapy” at the end of whatever the person was enjoying. It agree with this post that If I were ever to suffer from dementia which is probably likely, that I wouldn’t want people calling it a “therapy” when I’m just enjoying my music like everyone else. Our book (Health Promotion and Aging, Haber) also mentions a video that went viral in 2012 of a 94 year old African American man, who rarely spoke, that became revitalized when listening to an iPod loaded with all of his favorite music. Because of this, I’m certain that there are benefits that music can have for dementia. I believe all the resources I would ever need if I were to suffer from dementia is mentioned right here in your blog. Finally, I have also previously mentioned in one of our discussion boards on dementia that it is important for all people especially those that work in a nursing home to view themselves as a “care partner” rather than a “care taker” and I believe this blog is somewhat related to this type of viewpoint on people with dementia.
Hello, I am a AGING320 student at the Erickson School of Aging. This blog was not only informative it was hilarious. It truly made me laugh because I see a lot of nursing homes putting the word “Therapy” behind basic activities that the aging community with dementia can perform daily while in assisted living. At the very end of this amazing post, you commented about how none of these should be considered therapies because they’re basic human needs and we should create activities that stimulate their brains and that they enjoyed before dementia.
In my course we recently discussed Dementia and Alzheimers and how to best stimulate the patients brain they should continue to see the people that they are familiar and try to stick to a memorable routine as possible (like how you said they should stick to things they already did). One thing that i’ve learned in this course and my other Aging courses is that we should always treat individuals with dementia as equal and not less-than. It is key to keep older adults with dementia involved and ensure that they maintain a healthy social life.
Hello, I am a AGING320 student at the Erickson School of Aging. This blog was not only informative it was hilarious. It truly made me laugh because I see a lot of nursing homes putting the word “Therapy” behind basic activities that the aging community with dementia can perform daily while in assisted living. At the very end of this amazing post, you commented about how none of these should be considered therapies because they’re basic human needs and we should create activities that stimulate their brains and that they enjoyed before dementia.
In my course we recently discussed Dementia and Alzheimers and how to best stimulate the brain they should continue to see the people that they are familiar and try to stick to a memorable routine as possible (like how you said they should stick to things they already did). One thing that i’ve learned in this course and my other Aging courses is that we should always treat individuals with dementia as equal and not less-than. It is key to keep older adults with dementia involved and ensure that they maintain a healthy social life.
Good evening, I am an Aging 320 student at the Erikson School of Aging at UMBC. I think that the stigma behind Alzheimer’s is perpetuated by the types of “therapy’ that individuals offer to patients who struggle from dementia. I think forcing a type of therapy onto an individual who has no vested interest in a task is counterproductive and oftentimes frustrates the patient and caretaker because the two begin to butt heads with one another. Over the course of the semester, we have learned how to decrease frustration among patients who suffer from dementia and one of the most effective ways to do this is to first understand the patient on a personal level — instead of forcing different types of therapy because of “proof” that has been developed through large-scale data analysis, understand the patient and who he/she is and from there, the care taker can take more productive steps in the care for his/her patients.
Hello, I am an AGNG320 student at the Erickson School of Aging at UMBC. I wholeheartedly enjoyed reading this blogpost by Susan Macaulay because I lived with my late grandfather, Baba, who had dementia. As I child I enjoyed walks with him, and he enjoyed being active and listening to music just as any other person would. Once diagnosed with dementia those very activities, which were a part of his daily routine before, became scheduled “therapy” sessions. Labeling simple activities as therapy can create misconceptions of people living with dementia not being able to do even the simplest tasks, such as listening to music and creating art, without it having to be some sort of remedial treatment. In the aging course we learned about Alzheimer’s disease as well as dementia, focusing on the changes one will experience, but this post helped me view things from the perspective of my very own loved one. If I were to apply it to my life, I would want myself to understand that living with dementia should not make me a special case and others should not pity me; instead I would want those around me to be a support system while understanding that I am still the person they knew prior to my diagnosis. Thank you, Ms. Macaulay for sharing your viewpoint on us needing to abandon the usage of the term “therapy” especially for the basic activities.
Hi, I am an AGNG 320 student at the Erickson School of Aging. I was drawn to this topic because we covered Dementia in one of our previous units. The post spoke about how dementia is stigmatized and how normal activities become therapies, which further isolates people with dementia in our society. The argument made by Susan Macaulay concludes that these therapies are everyday activities that ordinary people do daily, without the therapy label attached. By adding this label, you dehumanize a group of people. Taking away from their daily living by marking it different from the rest of society. If I myself choose to exercise, garden, or adopt a pet, it would not be label as therapy. But as soon as I am diagnosed with Dementia these activities become stigmatized, no longer a normalized routine. Though I have never given this a second thought before it makes completely sense how our words may be isolating our elders. This may even lead to others approaching the care giver to ask about the elders “therapies” instead of asking the elder themselves (Alzheimer’s Association, 2019). As a society we need to focus on how much people with dementia have to offer, by asking and getting input from others we can discover their strengths and give their live purpose.
n.d. (2019). Overcoming Stigma. Chicago: Alzheimer’s Association. Retrieved from: https://www.alz.org/help-support/i-have-alz/overcoming-stigma
Hi, I’m an AGNG 320 student at the Erickson School of Aging. I thought your blog post was really interesting and you make a good point that these activities shouldn’t be described as “therapy” simply because the person doing the activities has dementia. It seems patronizing to me to describe perfectly normal activities as “therapy” like that. Millions of people around the world own pets, and while it’s been demonstrated that pet ownership can be advantageous to people living with dementia, that doesn’t make it a form of therapy. My grandmother is an artist; she has been a professional graphic designer and a painter for over 40 years. If she were to develop dementia in the future, her profession and hobby wouldn’t suddenly become a form of therapy because her brain is changing. I think that referring to these normal activities as “therapy” is a form of what Dr. David Haber (2016) calls “elderspeak”. I really agree with your message that we need to change the way society sees dementia. As people age, their brains naturally change, but this is no reason to be patronizing towards them. Thank you for this great blog post, I really enjoyed reading it and learning your perspective!
Hi Ms. Macaulay, I am an Aging 320 student at the Erickson School of Aging. I enjoyed reading your informative blog post and agree that activities shouldn’t suddenly be labeled as therapy when one is diagnosed with dementia. I have observed that there is a negative connotation that comes with dementia and dementia patients in our society. I believe this is due to lack of proper knowledge about dementia. We’ve learned in Aging 320 course that a method known as the biomedical model views dementia as a fatal problem the needs cure. In addition, it disregards the fact that dementia patients are still humans with a different perception of life due to a changing brain (Power, 2017). However, that method is no help in allowing demented people improve their lives and reach their maximum potentials. Instead, we should adopt the experiential model when we interact with or provide care for dementia patients. This method views dementia patients as regular people with changing brain and advocates for the empowerment and autonomy of dementia patients (Power, 2017). It is essential to eradicate the stigma associated with dementia and interact with patients in a way that doesn’t make them feel like a burden, a problem or a disempowered individual. I believe educating people, as you are currently, is the best way to raise awareness and eliminate the stigma.
Power, G. A. (2017). Dementia beyond drugs: Changing the culture of care. Baltimore: Health Professions Press.
Hi, I am an AGNG 320 student at the Erickson School of Aging. I very much hate the fact that a lot of older patients get treated like everything they do is “therapy.” If someone enjoys playing a sport, even at an advanced age with dementia, it shouldn’t be labeled as “athletic therapy,” or something along those lines. These people need to be treated like what they are… adults. They aren’t some archaic, completely handicapped person that needs constant “therapy” to survive. Although they may need assistance in some aspects of their lives, they should still be allowed to do what they want and love to do without being shamed with such a derogatory label. Not only will is lead to more perceived independence by the individual, but it would lead to much higher self-confidence as well. This could have a positive impact on the disease itself. As a few of my fellow students referred to, we had a discussion post a few weeks ago about how all of these activities can positively impact dementia patients and how they can aid in calming potential outbursts. Again, they were labeled as “activities,” not “therapies.” This subtle change in term can make a huge difference to someone who has enjoyed that activity their entire life and are now suddenly having it referenced as a “treatment” for them.
Good for you Alyssa!
Hi, I am an AGNG 320 student at the Erickson School of Aging. I agree that individuals with alzheimer’s should be treated as equal to individuals who do not have alzheimer’s. Additionally, it is important not to label anything as “therapy”. For instance, it is ideal to have pets around, but it should not be labeled as “pet therapy”. It is significantly important that these things that an individual with dementia has always enjoyed are not stigmatized. I think that exercise, poetry, and art can be good outlets for individuals with dementia, however I agree that it should not be considered therapy. I agree that therapy has implications that are unnecessary. My position relates to the concepts studied in class because we have learned about alzheimer’s and the importance of not discriminating. Two weeks ago, we had class discussion posts on dementia patients and learned about how it can affect those with dementia as well as their loved ones. In the class textbook, it discusses that when individuals with dementia notice “elderspeak”, which is degrading language that can be offensive, they are more likely to resist treatment (Haber, 2016). Therefore, it is very important to treat individuals with dementia as equal. It is important to keep older adults with dementia involved and ensure that they maintain a social life.
References
Haber, D. Health Promotion and Aging. 2016. 7th edition.
Salutations, I am currently a student taking Aging 320 @ the Erickson School of Aging ,and I would like to say that this post speaks volumes. Different kinds of therapy make living with an ailment much easier. You mentioned things such as pet therapy, music therapy, and art therapy. All of which can stimulate memories fostered over a lifetime. We discussed the effects of Alzheimer’s a few weeks ago, and how it can take a toll on the lives of the people effected by it and those that love/look after them. Having such therapies as you have mentioned, make it easier on the person affected by it. They potentially remind the person affected by it the precious memories they hold onto. It also reminds people that those affected by alzheimer’s are still people at the end of the day. They would be less prone to treat them as outsiders, and more like the humans they are. The mayoclinic highlights that being in a positive environment can foster better overall care for the person with the ailment.(Mayoclinic, 2016) Having such positive and lighthearted methods of therapy can brighten the gloomiest of days.
References
Alzheimer’s care: Simple tips for daily tasks. (2016, April 02). Retrieved from https://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/alzheimers-caregiver/art-20047577
I don’t think that follows…
What became of the role of “Shabbaz”. The “house parent” of the Greenhouse project. Compare that role with the objectivizeing role of the “nursing home” medical model. Last Greenhouse we visited the physical therapists had preempted the operation. Not a dignified family like community, but rather hierarchy of invidious comparison. The later created an atmosphere of demoralization; a sense of covert dependency and loss of empowerment.
Hello! I am a student taking AGNG 320 at the Erickson School of Aging and I completely agree with this post. Two weeks ago, we had discussion posts for an assignment in which we discussed dementia patients and how we would treat the patients, specifically what we would do to handle some of their outbursts. A lot of the things you mentioned in this post including the art, exercise, poetry, and music were all mentioned. However, I do not believe we really referred to them as therapies. I agree with this post completely and I think it goes back to the saying we all learned as kids; treat people how you would like to be treated. People who are treated like you mentioned, like nothing more than a chair would have a tough time living to their fullest and would probably lose abilities even more quickly. Socialization and involvement are a big factor in the lives of these older adults.
Something our book (Health Promotion and Aging, Haber) points out is that when these people notice “elderspeak” (the consescending or degrading type of language that can be offensive) they are more likely to resist treatment and act out. They all deserve to be respected and to do the things they love, without it seeming like a chore.
I think maybe if we just think about these things as keeping them active and involved it could reduce the stigma of treating them as therapies. Anyway, thank you for this! I am going to be sure to remain mindful about how I think and speak about all of this.
Good luck with your studies, and I’m glad you intend to stay on the right track!
If you object to the process of being “therapized” it is incumbent upon you to understand what is motivating the “therapists”.
I don’t think that follows…
Re: “With levity.” Phew!
Don’t you realize that by shunning the ministrations of these young University trained Professionals you will be denying thousands upon thousands of young people the opportunity of duly licensed and regulated “job therapy”?!
The next thing you will be wanting to eliminate automobile dealerships.
Not sure how to respond to that r jonathan kramer…
With levity. I wrote it drenched in irony and sarcasm. Basically, the pious practitioners with their community college credentials and condescending grasp of the obvious share much in common with car salesmen who make jobs purveying platitudes while simultaneously failing to deliver any commensurate value.
Don’t you realize that by shunning the ministrations of these young University trained Professionals you will be denying thousands upon thousands of people the opportunity to benefit from the status of duly licensed and regulated “job therapy”?!
The next thing you will be wanting to eliminate automobile dealerships.