In the dementia care arena, every normal recreational pursuit is being labeled as therapy.
I’ve got a real issue with it, as it medicalises everything ‘we’ do, almost as if others don’t engage in these ‘activities’.
Why would I be comfortable going into therapy, when that word implies I’m needy and sick in some way and to ‘cope’ with that, have to go through some kind of intervention or therapy?
I’m already very busy doing the things I LOVE. But maybe as dementia progresses if they all get tagged as therapy, I’ll start showing a few symptoms that some would want to restrain me for?!?!?
Have a read of this article, and see if it gives you any insight into why it could be very important to STOP tagging music, gardening, art, reading or any other pleasurable activity as therapy.
Maybe this quote from the article I’ve referred to simplifies why this needs more careful thinking. And is why we might need to stop imposing ‘therapy’ into all people living with dementia.
Maybe I’m just a bit dumb?
By the way, I’m not adverse to therapy per se.
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Yes, and while I have been “in therapy” at various times in my life, I don’t want any of these “therapies” when I’m living with dementia: http://myalzheimersstory.com/2019/01/11/7-kinds-of-therapy-i-dont-want-when-im-living-with-alzheimer-disease/
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Very relevant to me at the moment within the NDIS – having to justify every part of living a normal life into a this hybrid ‘medical’/’rehab’/’capacity building’ model leaves people living with dementia and their families bewildered, exhausted and disheartened.
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I must say, I found the NDIS challenging to start with, in terms of the processes, but in contrast to what I was being provided, and the way that was provided, is really inferior compared to what I now have with the NDIS. It was definitely worth the effort.
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A bit like “meaningful activities”? O dear…
To me, “therapy” connnotes an intervention (usually led by a professional) with a healing purpose. Pilates is therapy for me, physically, for example, whereas dancing is simply something I love doing. Perhaps there’s a monetary element too: Pilates costs, as there’s a professional & equipment involved, whereas dancing is free. I pay for “therapy”.
I’ve often wondered about “activities” too. I’m pretty sure that term stems from “activities coordinator” job roles & “activities of daily living” (ADLs) but there’s a concept of “filling in time” that doesn’t sit comfortably with me.
It took me quite a long time to understand that just “being” is often enough for the person I love who is living with dementia. Yet I also know how hard it is for her to initiate anything, that she can end up bored, unstimulated, even agitated if nothing happens around her. So do I “engage” her in “activities”? Nope. The reason is that if I lead, say if I pull out some art stuff & suggest she do some drawing (which used to be one of her passions) she’ll look at me as if I’m some stupid teacher! She’ll see right through my intent, i.e. to “keep her busy”. 😉
But if I’m cooking & she comes over to have a look, she may end up doing something with me…that’s living, it’s not an “activity” because there is no expectation of her.
I think it’s the power dynamic that defines who is doing what, to or for someone. Living is being with. Therapy is doing to and for. I’ll just scrap the term “activities” entirely – it’s demeaning.
Love to you Kate.
.
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Oh yes… I detest the term ‘meaningful activities’! Love your insight ‘Doll’ xxxxxxxxx
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WELL SAID Lynda! I began to comment there then moved to my BLOG so I could be longer and add some links. Please check out: https://mhorvich.blogspot.com/2019/04/the-conversation-continues.html
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Love all the sensible thinking we do… xxxx
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Hello. Interesting article, as always. I’m not sure if this is referring to therapy, as in counseling, or therapy of the physical/occupational/speech kind. Well, I’m a speech therapist, so I’ll answer from that perspective. I think maybe at least part of the problem lies in how we present the activities to those we are working with.
I refer back to my mother, who was in rehab following a hip fracture. She also had some moderate dementia, probably vascular in nature. I remember she angrily stated, “I know how to make soup!” I tried to reason with her, by assuring her that her therapist was looking at things like how long she could stand, whether she was able to grasp the can opener or remember how to operate the stove. There has been such a push, in recent years, to make activities “functional,” that sometimes we neglect to fully explain what we’re trying to accomplish.
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Oh wow, how great to hear from you! And I look forward to your new website! Re the term therapy, I’ve got no issues with it when it is therapy in a clinical sense. It’s the ‘therap-isation of everything else!!!! That’s what bothers me. And I wonder if calling it therapy, turns people off of accepting it? Lots to think about as always 💐💐
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Kate,
I seem to always agree with your observations but then feel the need to “point/counterpoint” and to look at the “Gray” vs the “Black and White.” I think that this tendency is a mirror to who I am when I look at most things in life! I will agree and give you that it is easier to refute, argue, fine tune, etc an idea or theory than it is to come up with the idea in the first place. So here’s to you, my friend, keep up the important discussions.
• • •
I agree with avoiding “Medicalization” in dealing with Dementia/Alzheimer’s and that has been one of my platforms in discussing Gregory and my “Alzheimer’s: A Love Story.” We spent our time on “Redefining Sense of Family, Home, and Relationship” NOT on “medicalizing” the twelve years we lived with Dementia.
In this post, you ask “we might need to stop imposing ‘therapy’ into all people living with dementia.” Your comments on “therapy” caused me to wonder about the relationship between “therapy” and your recent discussions on framing Dementia/Alzheimer’s as a “disability” in which it should be treated as a right of the person diagnosed with Dementia to have support in compensating for their faltering abilities
Trambling’s quote that most do not actually enter therapy and/or drop out by the third session is a different issue and is most likely related to all the other care strategies for PLWA that need attention and “fixing;” like caregiver training, safe environments, elder abuse, sufficient staffing, etc etc etc.
(People Living With Dementia = Did I get that acronym correct? P.S. It is easier typing “PLWD” than it is “People Living With Dementia,” but I hate reducing people to acronyms … but that is yet another “front” on with to debate “-)
Perhaps the answer to the statement “Let’s all go into therapy!” might be as easy as when an activity is studied in depth and applied to help remediate and or compensate for abilities lost; physical, mental, cognitive, etc; it becomes a therapy. In other words playing music is for a greater need and seeking a more important outcome than just for the purpose of listening. Perhaps for someone who has lost the ability to play the piano, like my Gregory did, the conscious study of possibilities and use of piano music can provide greater results: listening with headphones to a CD of piano music, going to a piano concert, sitting in front of a piano and “playing” with the keys, and more.
This is a link to several sessions I had with Gregory and the piano at his memory care facility (careful not to loose your place for these comments) https://youtu.be/FGHRGRML4lk https://youtu.be/IGJ1Fs0LUr4 https://youtu.be/7Du-LVoJqOg
So I googled various types of “therapy.” What I found is briefly discussed below. Perhaps those “everyday” activities about which you wonder “the need to be therapized or medicalized when need extra, special, and/or differentiated attention do come under the “medicalization” umbrella.
What is Music Therapy?
Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.
Music Therapy is an established health profession in which music is used within a therapeutic relationship to address physical, emotional, cognitive, and social needs of individuals. After assessing the strengths and needs of each client, the qualified music therapist provides the indicated treatment including creating, singing, moving to, and/or listening to music. Through musical involvement in the therapeutic context, clients’ abilities are strengthened and transferred to other areas of their lives. Music therapy also provides avenues for communication that can be helpful to those who find it difficult to express themselves in words. Research in music therapy supports its effectiveness in many areas such as: overall physical rehabilitation and facilitating movement, increasing people’s motivation to become engaged in their treatment, providing emotional support for clients and their families, and providing an outlet for expression of feelings. https://www.musictherapy.org/about/musictherapy/
What is art therapy?
Art therapy is a mental health profession in which clients, facilitated by the art therapist, use art media, the creative process, and the resulting artwork to explore their feelings, reconcile emotional conflicts, foster self-awareness, manage behavior and addictions, develop social skills, improve reality orientation, reduce anxiety, and increase self-esteem. A goal in art therapy is to improve or restore a client’s functioning and his or her sense of personal well-being. Art therapy practice requires knowledge of visual art (drawing, painting, sculpture, and other art forms) and the creative process, as well as of human development, psychological, and counseling theories and techniques. https://www.arttherapy.org/upload/whatisarttherapy.pdf
What is play therapy?
Play therapy can also be used to treat issues faced by teenagers and adults. By adulthood, most people have lost their ability to playfully explore themselves. Play therapists are trained to help adolescents, adults, and even the elderly relearn the values of play. Playful exploration has been proven to enhance both cognitive and physical behaviors, and there is a significant amount of research from the fields of neurophysiology and molecular biology that supports play therapy as a valid therapeutic technique for those past childhood. A growing number of organizations and experts are dedicated to play research and advocacy, believing that play is important for people of all ages.
Play has been shown to optimize learning, enhance relationships, and improve health and well-being. Adults and children engaged in a therapeutic alliance that focuses on play have an opportunity to choose from a variety of modalities such as movement (body play), sand play, dream play, nature play, social play, pretend (fantasy) play, creative play, storytelling, and vocal play. Play therapy may be used to address a variety of health challenges experienced by adults, especially if incorporated with other treatment modalities. One of the most significant benefits is that play can provide a comfortable and safe environment that may prompt an adult to approach more serious issues. https://www.goodtherapy.org/learn-about-therapy/types/play-therapy#Play%20Therapy%20for%20Adults
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Let me know what you think about Gregory’s piano “lessons.” Did he enjoy, was he frustrated, was it worth the attempt?
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I’m not sure… having once played the piano well, and now no longer able to do more than scales, I find it frustrating! I can only answer for me xxxxx
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This comment needs a blog response… and some time to think! I’ll be back dear friend xxx os remind me if I forget 🙃
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I love when something I have to say triggers thought:-) Love you Kate
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Ditto… and I love you too dear Michael. Ps I wished we lived closer! Could do with a chat and in person hug 🤗 xxxx
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Michael, my thoughts are: http://myalzheimersstory.com/2019/01/11/7-kinds-of-therapy-i-dont-want-when-im-living-with-alzheimer-disease/
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Loving to see the conersations continuing xxx
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Susan, I agree with you and your seven types of “therapy” you do not want to have if you ever had Dementia. I also agree that it is so easy to OVERMEDICALIZE in so many situations.
My personal reaction, however, is that at the point that “others” have to decide for me what they might do to engage, facilitate, interest, or help me occupy my time when I am no longer able to do that for myself, it might just be OK to call it “therapy” if I am able to benefit. There is a definite difference between “Pet Therapy” and playing with your pets.
But when I see the JOY on resident’s faces when pets arrive on a unit and PLWD get to play with them, I don’t really care what it is called.
Decisions also need to be made when not to bring pets in as I had to do with Gregory. He would hold tightly to the dog and not be able to let go. We had to carefully remove the dog’s leg from his clenched hands for fear of the leg being broken. Gregory wasn’t doing this on purpose, he just couldn’t control his hand muscles. To me, it felt like a therapeutic situation needing therapeutic decisions.
I continue to need to filter my views to make sure they are “GRAY” and allow for variations rather than the easier “BLACK and WHITE” ones.
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I love grey… keep up these interesting conversations please everyone! Love you all xxx
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MIchael, I don’t care what it’s called either, as long as it’s not “therapy.” LOL 😛
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I’m wondering if we call this chat friend-therapy??? 🙃🤔🤣
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Agree! I am trained in the creative art therapies, I also work in care communities. Frequently a program will be labeled as “therapy” because of my educational background. I am constently working against that tag. I am not working with an indivudal or group as a psychotherapist, but someone who helps facilitate something the indivdual or group loves. I bring music to the music lovers, I make sure those who want to still garden are planting and tending to the gardens, I am bringing paint to the painter, I teach art history to those who want to study the subject. A place I once worked at proudly announced they now have “Harp Therapy” by someone who will come in once a week. This program is simply a harpist playing music on the harp for an hour. Why do we have to label this therapy when we can call it a recital? I do know that the naming of programs often is to appease the State and financial institutions, but why are they the highlighted group? I work to keep those living with dementia as my guides, I frequently fail, but the “therapy” tag appears to me to be an area that we should always be able to get right.
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Thanks Kathryne… it sounds to me as if we need to clone you XX
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I love my gardening but not safe to cut grass as would cut mower cable, therefore local council providing a volunteer to “keep an eye on me”, whilst I do it. They, nor I, see it as therapy but as me maintaining my independence. We seem to be lucky, therapy is not a word used much with dementia here: support is the buzz word. Support to Scotland means allowing individuals keep their independence and self worth as long as possible, then if in full time care allowing them dignity. Obviously there are failures but seems to work most of the time.
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Keep maintaining your independence… YAY! So sensible to view it this way too 👍👍👍
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So true, Kate
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Thanks Bobby… your opinion matters a lot to me too xx
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Thank you for this blog Kate – it has really helped my thinking. As a nurse and a PhD candidate, I have been critiquing and writing a paper challenging the BPSD model. Part of my argument is talking about how a move from pharmacological therapy to ‘non-pharmacological interventions’ such as music therapy, dance therapy, pet therapy etc. for persons living with dementia is not person-centred, even though literature suggests it is – sadly. In my view, non-pharmacological interventions just papers over the huge cracks of BPSD. Activities are a normal part of having a social life and being a social being. They are a part of life, not a therapy or an intervention.
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The literature is IMO, based on mostly very small samples anyway, and comparing everyday pleasure to therapy. Which, if as you also suggest, PCC was in place, would not be needed. Thanks for thinking differently xx
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Agreed Kate not sure when simple pleasures anyone can enjoy like music or gardening have become therapy for those living with dementia. Just sitting here shaking my head in wonder 😱
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Absolutely xxx
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Absolutely agree with you, Kate. I wonder that the over-professionalism on “therapy” is just a matter of power control and superiority of status. How come the experience of entertaining and enjoyment will become a “therapy” on the person with dementia. Fully support you regarding this warm reminder and make awareness of every “professional”. Thanks a lot ~~~
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Thanks Kenny… in my country, part of the use of the word therapy related to funding! Stupidly IMO.
And also, the other point is if the sector was supporting people with true person centred care, and provided enough suitable hobbies for people to enjoy each day instead of sitting in rows bored, and instead of physically and or chemically restraining people, we’d never need to call it therapy as it would never have stopped happening. Just a few additional thoughts…
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Ironically I used to work in a day centre for the elderly with dementia (!), there was no restraint but there was a one size fits all approach; not good.
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Ironic indeed… so did I! And most definitely agree. One size does not fit all!
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