Engaging people with dementia

imagesI often ponder on the various activities and forms of ‘behaviour management’ or recreation offered to people with dementia in the community, and then in residential care homes. Why not go skydiving, dancing or fishing instead of playing Bingo…  I’d be happy to spend it on that!

I suspect it is likely the reason activities such as Montessori are needed to engage people with dementia is because they have been so disempowered by the Prescribed Disengagement, others unintentionally disabling them, and then being offered activities such as Bingo (!), they have simply become disengaged.

I would too, if Bingo or art classes were all I was being offered as recreational activities, which in for me, are not engaging or pleasurable at all. (No offence to the artists, it is just not my thing, apart from the fact I am totally useless at art!!)

Montessori is being used in many care homes to “encourage engagement, a sense of community, person centred care” and so on, because once the label of dementia has been placed on our head, these things are taken away and we are treated by many as if we don’t exist, and “are not all there”.

Research in Wollongong has just shown that part of this issue, is that people without dementia, have very low expectations of our ability to function in any way. Perceptions and misperceptions have a lot to do with this, and are the reason why I and many others with dementia continue to speak out.

If treating adults with dementia like children, or with activities or methods developed for children is the only way of providing better care for them, I suppose it’s better than not using them, but there has to be a better way, surely? Things like Doll therapy, whilst may be appropriate for a very small group of people in residential care, seem to infantilise us, and devalue us. Personally I’d prefer people with dementia were engaged in some trans-generational activities and outings with real babies and children, rather than dolls. I know some people reading this blog (Sorry LB xx) have researched this intervention for dementia, and support it and use it well, but I still feel very uncomfortable. The key here of course, is they are my feelings of discomfort. I’m ok with that.

In the same way our communication problems, which can sometimes caused a change in our behaviour, most likely because OTHERS have not taken the time to learn to learn how to communicate with us, are ‘managed’ as ‘challenging behaviours’. It is not always possible to engage us in the ways that work for us when we were not disAbled, nor the way that works for people with our dementia, and yet, the sector that cares for us, and some family/friend supporters do not take the time to learn how to communicate with us, then wonder why we might display “challenging behaviours”.

We need to be engaged in ways that accommodate our various and changing disabilities. We need to be fully included. We need environments that are enabling and dementia-friendly and accessible, in the same way we provide wheel chair ramps in all buildings and public areas. We need the community to be dementia aware, and to respect us, and engage with us, rather than accepting that locking us away, or leaving us isolated is ok. All we really want to do is to continue with our lives in the same way we would if diagnosed with any other terminal illness, supported to live in our communities, engaged in the things we loved doing before the diagnosis.

The Dementia Friendly Pilot Project in Kiama NSW is aiming to do just that, and a group of people with dementia, supported by their support people, along with the local council, the University of Wollongong and Alzheimer’s Australia, is leading the way in Australia with engaging people with dementia in their work.

Well done Kiama… and congratulations to Dennis, Tina, Veda and Lynda for leading the way.

22 thoughts on “Engaging people with dementia

  1. Great post as usual Kate.

    I agree with many of the points you make.

    My Mom became symptomatic about 10 years ago, and her abilities and capacities have changed dramatically since then. What I have done during this ongoing journey is to do things with her that she enjoys doing until she no longer wants or is able to do them at which time I experiment and try to find other things that she can do, wants to do and that provide her enjoyment and stimulation i.e. that engage her with life.

    For example: Mom has always been an extremely active person and very sporty, she was always “on the go.” So we regularly golfed together. In fact, in the summer of 2012 when she was 84 we golfed almost every day. Our played our last game together about six weeks before she was placed in a nursing home. However, at that point she was beginning to not be able to hit the ball more times than she could and that sometimes frustrated and disappointed her. In summer 2013, I took her to the putting green at the local course and she enjoyed that; she was still able to sink puts.

    Up until recently she helped me in the kitchen when she came for lunch because she wanted to and she enjoyed it and it made her feel useful. Sometimes just standing next to me and chatting as I made our lunch felt good and comfortable for both of us.

    Mom is confined to a wheelchair now, but she still wants to stand up and walk at times. She is prevented from doing so by the nursing home staff. It’s more convenient for them and “safer” for her if she stays in the chair. I disagree with the way her “care” is delivered, but I’m powerless to change it. However, when I am with her, which is several hours each day, I help her to stand up when I see she wants to get up and I help her to walk when she is able and expresses a desire to do so. Some days she can and some she can’t and she knows her capacity and will say what she wants when I ask her even though her language skills are limited at this point.

    I strongly feel it’s important for people to have PURPOSE and to feel competent, regardless of the state of their health. There are multiple big issues with the care in many care facilities which in large part result in many residents feeling bored, useless and incompetent.

    I also feel it’s important to support people in discovering what they can do and inspire and help them to do it whatever “it” might be.

    On the subject of dolls, I got Mom a beautiful one that looks 100% real. She was delighted with it in the first few minutes she held it, but I could see she soon felt uncomfortable. In her own words she told me she didn’t want to be “responsible” for it. She felt it would be better if I cared for it she said. So in her case, the doll began to make her feel anxious. When I saw her discomfort, I removed the doll.

    Everyone is unique and will have different reactions to different things. The key in my opinion is to support people in finding what brings them the most joy and help them in making that happen whatever it might be: watching game shows on TV, playing bingo, sky diving, golfing, socializing with others…whatever! Our goal should be a rich and rewarding life until the day we die.

    Most care facilities are not equipped to deliver this kind of life engaging person-centered care and many people simply do not have the resources to be able to provide it, even if they are highly motivated to do so.

    I try my best to do what I can to ensure my Mom is as engaged as she can be and wants to be today, which may be different than yesterday and tomorrow. I still have the doll and will try it again sometime in the future. I constantly experiment. I am also advocating for change to increase the likelihood of better care for myself and others in the future.

    That’s my experience so far.

    • Thanks for sharing Susan… having purpose, being engaged in the things you like today which are not necessarily yesterday, are so important. Often I have seen in care homes, that because children say their parent liked X, y or z once, that is all they get offered, if that are that lucky! My kids, even now, have little idea of my every changing likes and dislikes… and especially my sex life!! 🙂

  2. Thanks Kate, my last article was about a year ago so its cool to get another one slotted in, and to know people are actually interested in the topics as well – haha. I hope you enjoy it when it comes out my friend.

    I suppose Aussies do say cheers and beers, but I hate beer and I much prefer a smile – yay!!!!!!’

    In relation to the word ‘activities – it really is only a boring old term for hobbies, keeping one active, things we like to do in our day, interests etc. I don’t believe it is meant to be disrespectful, but on the other hand I would like to know of a word that could be utilized in its place.
    Unfortunately if we pick specific words to bits we may forget to focus on what is really important here, and that is maintaining the person within, their preferences in how they want to live their life, and the quality given.
    We do tend to use the word ‘activity’ in every walk of life though, from kindergarten, school, parties, workplaces, hens nights, games, uni, etc.
    If there was a term I would prefer it is always going to be a persons choice or preference in regards to what they want to keep active doing, but I do only see it as a word. Not the ultimate but just a word.

    I do agree however with the topic touched about when a person lives within a RACF. This is definitely their HOME, and when I managed RACF’s, I always used to reinforce strongly to my staff that this was the case. There is no other way to look at it, and we are getting paid to provide a service to people within their home – not the other way round.
    Therefore it is the person who lives in their home who has the say, the house rules are theirs, their choices, their routines, their life continued as THEY know it.

    How about cheers and rainbows today.
    Leah.xxxxx

    • I dislike beer too! And re a different word to ‘activities’, when we go out or engage in a hobby (pre dementia), do we call it an activity? Mostly not, we call is what it is. The reason ‘activities’ has become the norm, is there has been SO LITTLE CHOICE, IMHO only of course! xxx

  3. Hi April and kgsdtr1,

    I think that both your responses to Kate shows you have definitely taken on board her feelings about dolls,and other activities, how we all have differing views, and how much what you do means to you. This is so commendable.

    Yes dolls and other forms of recreation are definitely positive for specific individuals and this is the only time they should be implemented, as not providing this need could be considered neglectful. If it improves the quality of life of a person, especially if they are in an advanced stage of dementia, and it provides solace, reducing anxiety and fear, yes, it is definitely a wonderful, non pharmacological way to provide peace.

    However, people living with dementia do have the right to have a say, and actually finding out what they prefer re recreation is crucial, otherwise we may be at risk of disrespecting their personhood and who they are as a person in their own right.

    I agree jumping out of a plane may not be the answer for a 90 year old crippled with rheumatoid arthritis and advanced cognitive decline, (oh dear!!!!), but never say never!!! Like I mentioned, if the risk is minimized and it has been expressed as a wish, we can possibly honour that. There are also virtual reality experiences that can sometimes assist someone to feel the experience if they are totally bedridden.

    I question that the more advanced the cognitive decline, the less enjoyment can be attained and felt.
    Dementia does not destroy feelings. We just need to know how to stimulate positive feelings with every aspect of our care. Joy, wonder, excitement, pleasure can still be felt – as opposed to many negative feelings. Sensory stimulation is definitely something that can change feelings and mood positively, even at the most advanced stages of dementia.

    Once again, each persons needs will differ so knowing each person in every possible way, is always going to assist us to ensure we provide individualized, person centered care, and to try to avoid assumptions based on what we may want at the same time of our lives.

    Eternally flexible we must be. Compassionate, empathetic, and imaginative. If we use all the skills we have as caregivers, then maybe we can capture an inkling of life through the eyes of each person we care for.

    Kate’s blog is the education we all need to truly see through the eyes of a person living with dementia. It validates our work in so many ways but also raises questions that are vital to making a difference.
    But then, each person with dementia will see things from a differing perspective, and this is the fascinating and wondrous field we are all connected through.

    I think it wonderful that we can all discuss what it means to make a difference, and together, hopefully create change on a greater scale than we ever thought possible.

    If you would like to read my published case study re use of dolls, April, I would be delighted to send it to you, if you send me your email address to shimmeringspirit@hotmail.com.

    Cheers and smiles.

    Leah.xxxx

  4. Nice comment Leah.

    What do you both think about the word “activities”? I know it’s embedded in care practice and job role descriptions, but it reeks to me of people in positions of power organizing other people’s lives and tastes.
    Kate, can you just imagine Veda’s expression when it was suggested that a beneficial “activity” for her, as a singer, might be to join Sing Australia and join in chorusing “The hills are alive with the sound of music…”?!!!
    “I’d rather be dead!” she said.

    • Hahaha, I’d rather be dead than do that too, and also art classes!!

      I detest the word “activities” as much as I really detest the term “day care” for adults with dementia needing day time respite. Positions of power, and still more of the “them and us” mentally. What they are “doing” for people with dementia, no equality at all.

      Professor John Swinton talks about it in terms of the person in residential care is the “host” – after all, they have been told (sold!!!) the nursing home is their home, and the staff and all visitors are the “guest”, and should behave accordingly. I really like that way of practice and thinking.

      • Thanks Kate and Leah. BTW “respite” is another problematic word. Veda banned its mention in our house for quite a while. For her it was ominous, ie being “sent away”. Why do people pretend that respite is for the person with dementia? It’s not….it’s time out for care partners.

      • Don’t get me started… respite, day care, and personally, even Montessori and Doll therapy for ADULTS, all make my want to yell! Respite, for sure, is time for care partners or supporters, not the person with dementia, which is not to say that time is not needed, but making out it is for us… really???

  5. Kate, your comments as always strike a chord within that urges me to change things! make them better! But we need to start further up with the way that social and recreational activities are funded. We would love to do pottery class, or sky diving or a trip to the reef – but the cost is exorbitant. The current funding model means that the most efficient and effective way to provide any sort of service is in a group, in a centre. Our men specific groups do manly things like aeroplane museums, and sports displays and pub lunches – and it still costs more to provide this service than we are funded.
    We need to lobby for more adequate and flexible funding – and then we can take you sky diving!!! 🙂 xx

  6. Its really interesting reading how you feel in relation to activities I digested what you felt in relation to doll therapy, but this does work, and for some people offers great comfort and I accept that these are your feelings Kate. People are not comfortable still to offer there baby into someone’s lap, with often the later stage dementia for the fear of the unpredicted situation. I don’t want to upset you but this is the case. Communities do indeed need to be more open and I would love it to be what you talk about. I will certainly look up the University of Wollongong and Alzheimer’s Australia

    • Thanks for joining the conversation here April, and yes, perhaps in the late stages of dementia, I might like Doll therapy, as do love holding babies now! And i understand the possible risks owners of real babies would perhaps feel too. There is a health service at a rural community in Victoria here, Winchelsea, and they provide som hospital services, community, residential and dementia services, and are going to build the community child care centre right next door, to allow as much inter generational opportunities as possible. Of course in a small community, many staff are looking after relatives, so to have your own children, including babies right next door will open up a lot more opportunities for this. Keep up your great work xx

  7. I wonder maybe if the level of dementia has something to do with what a person finds enjoyable. And interests a person had pre- dementia diagnosis. I do not have dementia but work in an assisted living facility. Three of our residents thoroughly enjoy art and art classes, even have some of their works occasionally on display in the art gallery. With their disintegrating discs and other health issues I highly suspect skydiving and dancing are no longer on their want-to-do list. But they are also in their 90’s and you are not. One of our residents seldom enjoys much of anything many more but she sure gets excited about a game of bingo. We try to find things each person enjoys and is capable of doing but it is not the same for everyone. I appreciate your blog and find it very informative; this is in no way meant to be a criticism, just a thought.

    • Of course, I can imagine I might not want to go sky diving in my 90’s either, and completely agree things will change as the dementia progresses, and everyone is unique. Oh, and not taken as a criticism at all. Keep up your great work x

  8. Hello my friend,,

    I am so not offended by your comments re Doll Therapy, so please do not apologize – as you know I only advocate the use of dolls, pets, dance, art, going to eat donuts at the market, sitting eating fish and chips on the beach, anything that is relevant to that person, based on what that person prefers. If it is not appropriate to the specific individual, then I would never ever suggest it, other than for those who have indicated this is what they would like. The use of a doll in my paper was just one small example of meeting the need of one individual only and is never to be used in any other way.

    I hope that this was clear in my research, I really do. This is why a case study was conducted as I do not believe we have the right to ‘guess’ what the needs of every different person require to enrich and continue their life as they know it.

    I agree totally with what you have just said, and despise the attitudes of many health care professionals who sit and decide what ‘they’ think is an appropriate activity for any one person.

    I myself, cant stand bingo and if anyone assumed I may without asking me first, they would have a hell of a fight on their hands – lol. I would then be unfairly labelled as exhibiting behavioural expression, when in reality I would just be communicating “I hate this goddamn game” – haha.

    We are all a product of our life transitions, and are all as different from each other as it is possible to be. I believe it is the inherent right of every person, regardless of whether they have dementia or not, to continue their life as they know it, including their preferred hobbies, activities and skills they have enjoyed throughout their life – unless of course it places them at such significant risk that it could be seen as fatal. Most activities however can be adjusted so that risk is minimized so yes, why not jump out of a plane??? I organised a 99 year old lady to go for a Harley ride once as it was her ‘wish’ – it was an amazing sight to witness!!!!!!!

    I used to care for Arthur Boyd s sister who is an artist in her own right – I was disturbed to see staff trying to engage her in activity that she obviously found boring and tedious – once I had her easels and ceramics brought to her she became herself once more and produced some of the most inspiring work of her life I believe.

    Delving into the life history of a person, asking them what they like to do, or what they have always dreamed of doing, should be an automatic part of lifestyle provision, and it is up to us to be flexible enough to embrace the fact that no one deserves any less.

    Thank you as always Kate for being our advocate for all those who are not given the opportunity to continue their journey as they prefer.

    Love always.

    Leah.xxxx

      • Hahahaha – you know me well darling. 🙂

        I have still been reading your blog always, but been flat chat with work, moving my daughter back home, (yay), flitting to Hawaii for a holiday with my girl and other crazy stuff. No rest for the wicked!

        I just read your article in the ADJ as well – awesome as always you legend.

        Next edition I will have an article in the ADJ as well. I have co written it with my mate Sheila Lapping from Alzheimer’s in WA
        I conducted the research to support a communication tool she had developed for people living with dementia who are aphasic, called CiommunicAid.

        Check you soon and good luck with the Dementia Congress – I unfortunately am unable to attend this year but may see you in Perth in April????

        Love and smiles.x

      • Haha, and you sound busy! Well done you on having an article in the next Journal, it sounds interesting. I’ll hopefully have one in that issue on a consumers perspective of BPSD!! xox

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