Therapeutic interventions for dementia

 

Image source: kamoclub.co.nz

Image source: kamoclub.co.nz

I have written often about the value of positive psychosocial and non pharmacological interventions for dementia, including listing the numerous ones I personally use almost every day. And although I find the article below quite useful, I still feel it may be missing the point in some ways. By the way, ADL’s stands for Activities of Daily Living, of which, of course, walking is one as well, so perhaps walking is not wandering after all…

The interventions listed in the article below may work well in residential care, but I do wonder how, or even if they apply at all, to people with dementia living in the community. I personally feel some of the interventions are, regardless of research papers supporting them, inappropriate for many people with dementia, and that they are infantilising and patronising.

I do realise though, they definitely do work for some, and when used appropriately can and do alleviate distress for many.

Somehow, and I’m not really able to articulate why, it is more of an intuitive feeling, but I feel that calling everyday activities such as listening to music, singing or gardening therapy may well undermine their value, especially as they a normal life activity that most people engage in. Why not just call them by what they are, e.g. gardening, listening to or playing music, etc., I wonder?

Personally, I also dislike reminiscence therapy, as many of my long term memories have disappeared, so this style of activity is, for me, far more distressing than helpful. Of course, for people with predominantly short term memory loss, who have long term memories in tact, it is probably great fun and a valuable intervention or activity. But, isn’t it just living. We all look back at photographs and times gone by.

And, I have had many debates and discussions with Leah Bisani regarding Doll Therapy, which I  am not overly supportive of, but I do know she uses it in her practice, and says it really supports some of her clients, and I believe her. For late stage dementia, for those people who want to hold dolls, of course, why not let them. That is rational, and sensible, of course.

With regard to the article blow, ‘ve come to know Gary Mitchell in the online space, even writing a blog for a blog series he ran as part of DAW2015 in the UK, and really respect the work he and Joanna Agnelli are doing, and I was lucky enough to have the pleasure of actually meeting Joanna in person at ADI2015 in Perth.

The important thing, I think, is we are all communicating and collaborating, trying to work together and inform each others work and professional ideas. That is the part of this global community of dementia – people diagnosed, our supporters, and people researching or working in the field – that is really exciting, as we are starting to all work together, and talk to each other.

So, please read the article, and please feel free to leave your thoughts as we are all interested. Thanks.

Non-Pharmacological Approaches for Alleviating Distress in Dementia Care

19 Jan, 15 | by josmith

Gary Mitchell, Dementia Care Advisor and Joanne Agnelli, Dementia Services Quality Manager for Four Seasons Health Care,  led an ENB TWITTER chat on Wednesday 21st January 8-9pm UK time, focused on non-pharmacological approaches for alleviating distress in dementia care. I did not participate in the online chat due to time zone challenges.

Estimates suggest that feelings of distress occurs in almost 80% of people living with dementia (James et al, 2008). Traditionally the management of distress was through the use pharmacological intervention, like Risperidone, Olanzapine, Quetiapine (Sink et al, 2005). While the use of these medications may be appropriate for some people living with dementia, the use of non-pharmacological approaches as a means to reduce distress is recommended because they can be more dignified and are in keeping with the ethos of person-centred care, and are more cost-effective when compared to the prescription and administration of medications (NICE, 2011). The approaches of reminiscence, reality orientation, validation, music therapy, horticultural therapy, doll therapy and pet therapy have proved popular techniques when considering non-pharmacological approaches for alleviation of distress in dementia care.

Reminiscence Therapy – focuses on assisting the person living with dementia to relive positive past experiences of their life and may be related to their family life, their wedding, the places they used to visit or the activities they used to carry out at work.

Reality Orientation – is about re-orientating the person living with dementia to their current environment. Orientation can be achieved directly through open communication between healthcare professionals and people living with dementia. In addition aids such as clocks, calendars, specialist dementia signage and personalisation of living spaces can also aid in assisting people living with dementia to recognise their surroundings.

Validation Therapy – centres on the idea of acceptance of another person’s reality. The clinical manifestations of dementia mean that sometimes people living with the condition may feel they are in another time or place. When healthcare professionals fail to validate a person’s feelings or reality this can intensify the level of distress a person is experiencing.

Music Therapy – is categorised as a sensory therapy which has generated positive results in relation to enhancement of wellbeing and alleviation of distress in dementia care. The personalisation of music therapy is an important element to consider so as to ensure that the person living with dementia actually finds the music, either being played or being listened to, as therapeutic.

Horticultural Therapy – or garden therapy has been emerging as a popular therapy in recent years. Horticultural therapy can be directed by healthcare professionals in a garden area and activities may be guided, for example the potting of plants, the sewing of seeds or the feeding of birds.

Doll Therapy – arguably the most contentious non-pharmacological approach on offer, doll therapy is often unstructured and engagement with the doll could be any number of things to include: talking to the doll, cuddling the doll, dressing the doll, playing with the doll or feeding the doll Benefits to doll therapy include: greater levels of wellbeing through improvement in communication, maintaining a safe environment and personal care. It should be noted that while there are a plethora of benefits associated with doll therapy, there are number of things that healthcare professionals need to consider in relation to doll therapy, the most of important of these is arguably ethical conduct as some critics of doll therapy believe it to be infantile, in that people living with dementia are encouraged to play with dolls like children.

Pet Therapy – is a popular but sometimes difficult intervention to source given the practicalities. Pet therapy or animal assisted therapy has shown positive results in people living with dementia who are fond of animals. The most popular animal used in this intervention is a dog.

Personalisation – Arguably the most important factor in all of these approaches is personalisation. These approaches to care are enhanced through life-history work (i.e. when a healthcare professional has taken the time to get to know the person living with dementia and understands their personality). The final point to note is that note that these approaches are important, not only in reducing episodes of distress, but actually enhancing the wellbeing of people living with dementia.

References

James I, Mackenzie L, Pakrasi S et al (2008a) ‘Non-pharmacological treatments of challenging behaviour’. Nursing Residential Care 10, (5), pp. 228-32

National Institute for Clinical Excellence (2011) A NICE–SCIE Guideline on supporting people with dementia and their carers in health and social care. National Clinical Practice Guideline Number 42. HMSO: London

Sink, K., Holden, F. and Yaffe, K. (2005) ‘Pharmacological treatment of neuropsyciatirc symptoms of dementia: A review of the evidence’, Journal of American Medical Association, 293, (5), pp. 596-608.

36 thoughts on “Therapeutic interventions for dementia

  1. Hey Kate. I have decided (after much discussion about responsive behaviors and how to work with them without use of drugs) that I would chime in (and from the point of view of the caregiver, not the person with Dementia.) This might be controversial but I have tried to be articulate and comprehensive in my experience and in my views. Will be interested to hear what you have to say:-)

    http://mhorvichcares.blogspot.com/2015/06/to-use-or-not-to-use-drugs.html

    • An interesting read Michael, and thanks for referring me to your blog. I probably must’ve known you wrote one, but it passed me by! Anyway, yes, I agree there can be examples of sensible and appropriate use of antipsychotics, and your blog about it is testament to that. The challenge I see all to often, is the exact opposite to that, and more often about families not even knowing their loved one has been placed on these types of drugs, and they are being used as a form of restraint/lazy care. As always, many sides to everything, but I am delighted to read a positive experience. Thanks for sharing. xx

  2. Thank you once again, Kate, for weighing in on something so very important and foundational to supporting individuals so they can live full and meaning lives with dementia!! I too cringed when I saw the wording ‘non-pharmacological approaches’ and ‘therapies’ (e.g., doll, pet, reality), because it uses an outdated medicalized orientation. People are bio-psycho-social-spiritual beings; the bio aspects of living with dementia does requires a medical approach. The psycho-social-spiritual aspects of living with dementia requires a living normally approach.

    Christine Bryden in her book “Dancing with Dementia: My Story of Living Positively with Dementia,” beautifully states – “How you relate to us has a big impact on the course of the disease. You can restore our personhood, and give us a sense of being needed and valued. Give us reassurance, hugs, support, a meaning in life. Value us for what we can still do and be, and make sure we retain our social networks.”

    When care partners have, for example, a ‘pet therapy’ mentality, the interaction becomes therapeutic rather than simply interacting with and enjoying another person. If pets are a part of the setting, they are enjoyed as a part of everyday life. As a person-centered dementia care expert with over three decades of experience across all care settings, it’s when we nurture normal, everyday life and environments that everyone thrives – care partners and those living with dementia. Kudos, Kate, for gently raising a flag about an important topic. Appreciatively, Karen

    • Thanks Karen… it is great that everyone is starting to talk openly about things, and now this includes people with dementia, the very group it really effects. Take care xx

  3. Dear Kate, You have an amazing sixth sense about what people need to be talking about next.

    The fact that you are not feeling comfortable with what is currently happening ie where an ordinary everyday activity is renamed or re labelled simply because the person doing it is living with dementia, means that this is not OK and there is a need for it to be thought about and questioned.

    Judy x

    • Thank you Judy… talking about it is the key, openly, and willing to listen to each other. Previously, people with dementia had for the most part not been talking out, and definitely, when they did, very few really bothered to listen. That is still happening in some sectors, but is very much changing… at last. Take care x

  4. Hi Kate, I saw a valuable segment on this ABC show last night: 9:45pm Grayson Perry: Who Are You? (PG)
    in which he makes a portrait of a “family” with three groups, and the last family was an English couple. He had a diagnosis of dementia and she was his carer. The main theme explored with them was “identity”. I think we should all be mindful of both our own and other peoples identity and how to honour that for people living with dementia and those who are their carers.

  5. If the activities help, in place of drugs, great. You are right to wonder about calling them “interventions” as they are the daily activities of life just used more purposefully.

    I wonder why you feel that many of the activities are good for residential but not in the community use. You say that they are “just things people do” so why not do them wherever and whenever needed?

    I am a person without dementia and I put on my headphones and listen to music when I need to calm my nerves or control my periodic depression. I take walks to help me think. I pet my cat, play fetch (she actually returns the puff ball to my hand,) laugh when she climbs circus style to the top of a ten foot ladder, and cry into her fur when sad.

    My theory is (and it is not original) “Whatever works, works. That is the measure of doing it or not!”

    Gerry, who has advanced dementia, loves her doll, talks to it, protects it, and shushes us when it is sleeping. It keeps her happy and feeling useful. What is the matter with playing with dolls if it works.

    Vivian. who is less advanced than Gerry, says, “That is so foolish to play with dolls. My children are grown and I don’t have to baby them anymore. I’d rather eat ice cream to keep me happy.” What is the matter with eating ice cream and gaining a few pounds if it works. Also in small amounts and if monitored will it really hurt a diabetic?

    Gregory has a Teddy Bear because I felt a “doll” would not “speak” to him but wanted him to have something like a “blankie” to comfort him. It works! He has always loved Teddy Bears. He loves this one who we have pegged, “Peaceful the Bear.”

    He holds it for comfort, throws it down when he is upset. He cries into it when listening to emotional classical music and he fondles its soft fur absent-mindedly.

    The bear has become a mascot for many of the residents and most of the staff at Gregory’s memory care facility.

    I have three more identical ones in the closet in case one goes missing or falls apart. I laughingly tell myself that I am a good mother. And if that works why not do it!

    * * *

    On a separate note, I am thinking about some of your recent facebook issues and your periodic comments: “Please leave your comments but leave your value judgement behind.”

    It reminds me of when homosexuality in the 70’s and 80’s was just beginning to organize itself, become more visible, fight for justice, come out! The Gay Men and the Lesbians more often than not bumped heads and battled when it came to labels like Gay and did that or did that not include Lesbians? And who is speaking for whom and why! Now we are GLBTQ and very visible (including more and more same sex marriage support world wide) So call it what you want Gay, Lesbian, Bi-Sexual, Transgender, and/or Questioning … we have come together.

    The current (for lack of better words) battle between those with dementia and those without dementia, between those diagnosed and those who give care might just be leading us to a better place. Since reading much of your work and having done other research, I find I am being more careful with my vocabulary and realizing that some of my views are arguable and even insulting to some. I just recently (in the middle of the night) revisited one of my blogs to clean it up. It came on too strong and for people who do not know me could very well wreak havoc in opinions. So I was comfortable to scale my comments back enough to still get the message across but not to offend anyone or open wounds or create new ones (especially for me:-)

    • All great comments and some wonderful advice and of course, if anything works – as an activity, as an activity of daily living, as a therapeutic intervention or therapy – use it. It is the use of the words therapy or therapeutic interventions, which I know has probably come rom the academic arena, seems somehow to shift the value of many of the things we enjoy, as they sound less encouraging than simply putting on head phones and listening to music. As someone said here, the accreditors expect certain terms, so we are stuck with them.

      Re the challenges people with dementia are having around language, I often discuss it in terms of the LGBTIQ or disability communities, and say we are there they were 30+ years ago, making a stand and saying what is and isn’t ok for us. It is slow but we are getting there, I think! Take care always Michael…

  6. Kate,

    I agree with you, these are not “therapies,” these are activities that people do to bring enjoyment and pleasure into their lives. Part of the problem is that many people who don’t have dementia are “afraid” of people who do. I think some people just don’t know how to relate to people who are different from them. Or perhaps it’s they don’t know how to relate to people who change or become differently abled.

    Also, it is true that people with dementia lose their ability to do things they are once able to do over time, just as we all do when we age. That means that fewer activities may be enjoyed together. What it doesn’t mean is that new activities, or different activities cannot be found that can be shared and enjoyed. I think people get stuck in boxes, or pigeonholes – maybe they need help getting out.

    As you rightly point out, capacities differ and preferences differ. What’s right for someone else may not be right for you, just as in all things.

    I recently shared a post on my page entitled 101 activities you can enjoy with a person with dementia. It’s here: http://myalzheimersstory.com/2015/05/29/101-activities-you-can-enjoy-with-a-person-living-with-alzheimers-dementia/

    The post has had close to 500 Facebook shares so far, which is a lot for my small blog. What that says to me is that people are at a loss, they’re not very creative, they’re stuck in a mindset that sees disability and loss rather than capacity and capability. I think it may be a matter of reeducation as it is with so many other things related to dementia.

    The bottom line is that I hope that people will continue to support people with dementia to fully engage with life in as many ways as possible for as long as possible. Whatever it takes to make that happen, I think we should do it. And while I agree that the terminology may sometimes be less than ideal, the goal is well-intentioned.

    Susan

      • Hi Susan, I have never been offered dementia medication, as do not have a form of AD. I heard a few weeks ago, from a medical doctor, that many doctors intentionally diagnosis AD – rather than the type of dementia they believe it to be, simply to allow people access to the medications for dementia; I even had one respond, yes, we know they are not for people other than people with AD, but perhaps the placebo effect will help! Whatever happened to ensuring an accurate diagnosis, and do no harm…

      • The person I’m in the discussion with has Young Onset/ Early Onset dementia. He says:

        “I cannot imagine trying to cope with this disease without the medications I take. And, none of the medications I take are for dementia.

        They are all for the symptoms of dementia. None are for the actual disease. Why? Because their is no drug on the market today that will slow the progression of this disease.

        That being said, there are patients I suppose who do not take any medications for this disease. I don’t know of any. But there could be.

        I cannot imagine it. Like I said, if I miss one round of my meds I know it real quick. I am on several meds for anxiety, stress, depression, and that is to just name a few.

        I am on some narcotics, some mild medications, and some that are like a time lapse thing. Take weeks to take effect, but they do help me get through the day to day struggles of the symptoms I encounter.

        I would not recommend anyone who has been diagnosed to go this route with no type of medication at all. Matter of fact, I am a huge proponent of caregivers taking something for the stress this puts on them. Stress is the number one killer when it comes to heart disease, and this disease is loaded with stress factors. It just is.

        The very fact my memory is gone is stressful. That alone can drive a person over the edge if not properly medicated. Least ways it does me.

        Even narcotics taken in the right dosage from a doctor is not harmful. Its these people who think they can self medicate their loved ones. The ones who think Dad would do better if he was taking two of this, instead of one of that. Not many times is the caregiver a doctor, but for some reason, many try to be. Taking anyone off of any medication is dangerous without the permission of their doctor.”

        Your thoughts?

      • I think that is a case oh poly pharmacy, and doctors using medications for issues such as anxiety, instead of providing the patient with good counselling, and strategies to live as well as possible… that being said, some people need those types of medications to cope with the symptoms of dementia. I’ll probably get shot for this, but I do feel, unless there is a real mental health issue, we would be better drug free… but, that is my way, it is not necessary the right way, and the person who is totally reliant on the drugs, is not necessarily going the wrong way.

        ?This is my way, what is your way? There is no wrong (or right) way.”

    • Yes, I agree when the person can make the decision for themselves and what is right for you may not be right for me.

      On the other hand, I advocate passionately against the use of antipsychotic medications to chemically restrain people with dementia instead of helping them live as fully as they can for as long as possible.

      Thanks for your response and openness. Much appreciated.

      BTW, in case you would like to participate or share, I am giving a free webinar based on my own experience with my Mom and anger and aggression on June 8 at 19:00 Eastern Standard Time. Link is here:

      http://app.webinarjam.net/register/2408/bdb9599a21

      Thanks again, Susan

      • Thanks Susan… you will I am sure find Michael’s blog about his positive experience with them interesting… and not sure I can join, as on route overseas at the moment! x

      • Kate, Just read the “Scotland Elders” piece. Who knew there was so much going on about antipsychotics. Turns out the one drug that they think might be OK is Risperidone, the one Gregory is using. It agrees with you and me that “Careful monitoring is the best practice alternative, with evidence that alternative treatments including analgesia and non-drug based approaches provide effective options” The “side effects,” if the drug is appropriately administered and monitored, and if other approaches do not work, gives a minimal risk in my opinion. It may be mean, rude, insensitive, raw … whatever … but Gregory and I did talk about “End of Life” options when he was able and both of us feel (including how I want to be treated) that QUALITY of life is more important than QUANTITY of life. If I am dying, just hold my hand and make sure I am as comfortable as possible. No heroics. No prolonging my life unnecessarily. Sit with me, sing to me, talk to me, stroke me and let me go. I do believe that (and I am not the one to decide when Gregory will die, he and his maker will make the decision) that an early death is better than the alternatives of life with advanced dementia. I know I can get into trouble for saying these things but I have to be open and honest as I have been since the diagnosis was received. Thanks Kate.

      • Michael, I’m all for MINIMAL. Kate, thanks for the link. As I mentioned in my response on Michael’s blog, I am further researching this issue and will keep you both posted.

      • Kate, thanks for the HALT link.

        Michael, I made a video last year with respect to the impact of antipsychotics on my Mom. One of the side effects is “impaired gait” which causes people to fall.

  7. Hi Kate, As a lifestyle co-ordianator for many years, I absolutley agree, we are full of jargon in aged care, we use acronyms, instead of words, and the use of therapy is overused. Unfortunately it is all about funding and how it is applied for. I remember having an argument with a manager because I would not call a music session music therapy on my monthly calendar, She said that it would better for the auditors. Who was attending this group. Not the auditors.

  8. Thanks for that Kate, good to be reminded how all interventions and therapy must be individualised and person centred! I understand your points about some activities being “patronising” but I think it’s important to realise the evidence based value of many interventions used… perhaps not for yourself, but for many people (like you say) in the late stages of dementia these have been known to work well. I have experienced the benefits of music sessions, sensory interventions, doll therapy and reminiscence therapy, allowing somebody with relatively little quality of life to have momentary laughter, enjoyment, value and expression. I agree it’s great to have the beginnings of different elements of dementia care working together to fight it 🙂

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