Please don’t shut us away in the activities room

I strongly believe dementia could be better managed with non-pharmacological interventions used to promote individually perceived wellness and happiness. Often with no treatment options, and the realisation it is a terminal illness, it is a difficult disease to understand.

However to accept it as a disease with disabilities to be managed, rather than symptoms contributing to someone’s demise would be far more productive. It would have also been far more useful if service providers had focussed on what assets I still had [have] to offer, rather than on my deficits. I had features prominent to dementia at least as far back as 2006, which were first formally examined in 2007. They included impaired cognition and comprehension, mild speech difficulties and language dysfunction, episodic memory loss, mild anomia and surface dyslexia. Compensation for these disabilities was initially very easy, but in 2008 further brain scans and neuropsychological tests were performed which showed increased deficits in the semantic categories, increased anomia, object and auditory agnosia, increased surface dyslexia, prosody and behavioural changes; my number cognition was also impaired.  A positive diagnosis of dementia was made, probably semantic, which was confirmed with a second medical opinion interstate in 2009.

Pharmacological interventions were and still are unavailable to me, and due to this, and my proactive response, treatment was and still is positive psychology and other non pharmacological interventions. The advice of medical practitioners and some service providers was to give up work, give up studies and start living for the time I had left. This prescribed dis-engagement seemed at odds with what I perceived to be positive living, so I ignored it, instead developing strategies to be productive and setting up a regime of activities and lifestyle changes specifically focused on overcoming the symptoms and meaningful engagement.

Neuroplasticity exercises, Transcendental Meditation, self-hypnosis, diet, herbal supplements, exercise, education, volunteering, counselling, creative writing, poetry, music therapy, and laughter have ensured I’ve reached wellbeing through engagement, fun and meaning. Resilience has also been vital to remaining positive, so if you don’t have a matured resilience now in your own life, I would strongly recommend you work on it. A phenomenological approach to this illness is my other key to positivity, i.e. studying the nature of things as they are, and investigating and describing my conscious experience in all its varieties without reference to the question of whether what is experienced is objectively real.

My blogging has allowed me to do this, not only by pushing me to think about it, but to try to express it in a way that has clarity and is meaningful for others to share or to learn from. Treating my symptoms as the gateway to supporting disabilities, not managing them in ways that restrict and hinder, and managing emotional changes with counselling and positive engagement, rather than treating symptoms with drugs, have become paramount to my well-being and perceived longevity.

If I had been referred to the brain injury unit (in the early stages, dementia is not that different), I would have been proactively treated to live the very best life possible with the injury I have.

Suggesting I disengage from my meaningful life, and take up activities other people thought might sustain my soul, was not only illogical, it was insulting. Initially it seemed I should join in, I should be grateful for the services people are trying so hard to provide, often with limited funding and resources. But I have found mostly I get no enjoyment from engaging in things that I was not interested in before (doh!!). Why I wonder, are most of the medical profession and service providers not more actively looking for ways to improve our lives in truly meaningful ways, as well as enhancing our perceptions of longevity, rather than simply planning for our demise?

Please don’t simply shut us away in the activities rooms, doing things others perceive we might enjoy or get meaning from. Ask us what we want, who we used to be, and then work with us rather than for us, in an effort to allow us to continue with our lives in productive and meaningful ways.

17 thoughts on “Please don’t shut us away in the activities room

  1. Hello Kate,

    Well, this might be a re-post from 2012, but it is a message that needs re-telling, so well done.

    I totally agree with you. Bingo is not my scene either. Frankly, there is a lot that takes place in the Nursing Home environment that does not qualify as “living well” for me. Dare I say this, bingo would be a cost-effective activity and some people like my partner’s Aunty would love bingo because she has played it at the RSL most of her adult life. But it’s not for me, nor most people I know.

    In the same way, Aged Care Reform has delivered better choices to people living with dementia by being able to choose their Home Care Provider, when they deliver the step of Aged Care Reform residents in Nursing Homes will be the notation ‘owner’ of the Government Funding, so if they are not happy with their quality of life, they will move to a better solution.

    The ultimate aged care is staying in your own home with in-home-enabling-support-and-assistance (commonly known as in-home care).

    Remaining at home is especially suitable for people living with a dementia. Home feels safe and comfortable because your home is familiar. In your own home, your life is all around you, everywhere; your spouse, photos of your family, your degrees on the wall, your dog, your garden, your computer etc.

    When people with a dementia disAbility are taken out of their home it tragically up-ends their life and their sense of who they are. Abilities can and do literally disappear over-night. People with dementia are literally “lost” in their new environment. That would upset anyone wouldn’t it, and it does!!!!! So now the labels start…”challenging behaviour” etc. But if you dropped me off in Russia – I would be ‘beside myself’ – and people would be labelling me as agitated, angry, confused, emotionally unstable, aggressive etc

    One of the great joys of supporting people with a dementia disAbility is that they are almost always more capable than they have been described to us (mostly by their family) and the great challenge of our work is…discovering ‘how can I connect with this person?’ ‘What interests this person?’ ‘How can I support this person’s abilities and how can I re-teach them skills they need to minimise their disbilities?’

    Last week a client kissed our Caregiver’s arm when she re-taught her how to spread butter and jam on her toast. Next step is to re-teach the client how to make the toast, get the butter and the jam. You can see the pride and self esteem in that lady’s face and body language.

    People with a dementia disAbility can be taught to re-learn skills (Prof Camp). Prof Sabat says they also make new memories and we see that time and time again.

    Last week we had a Christmas Lunch on the verandah overlooking Narrabeen Lake attended by 4 X 93-year young ladies who have a dementia diagnosis and live at home enabled by our Live in Care service. They chatted away making perfect sense and with a great sense of humour. Unprompted and with no aids one lady recited long poems from memory. She was impressive. We sang Christmas Carols together and they knew the words better than people HALF their age. They checked in on each other during the lunch, asking how they were, including a young man who is 70. And they really enjoyed the delicious food, going back for seconds and expressing their delight.

    As one lady left, she said to me “they are happy and friendly here”. That lady is described as having aphasia and yet when given time she gets her message across quite well. When she is relaxed and focused on a topic – such as art, she speaks fluently with no difficulty.

    Thank you for raising the problem with bingo. Too many Nursing Homes provide what I call “battery hen care”. Warriors like you Kate Swaffer and your colleagues are changing expectations. So are organisations like Daughterly Care, where we try our best to be person-centered in our enabling support and assistance, within the time limits dictated by the budgets of our clients.

    And because our clients keep placing spouses or parents in Nursing Homes…we are opening a Joyful Living Home in February 2018. (But we will always believe …your own home is best, especially with dementia).

    I hope you have a relaxing and happy Christmas with your husband and sons.

    Kate Lambert
    Daughterly Care


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  3. Kate,
    What you have shared with us, really should be compulsory reading for everyone associated with the treatment and caring for sufferers of dementia. I like your analogy to the treatment of brain damage patients. I also like your revulsion at being asked to participate in activities you never enjoyed before. It really is offensive.


  4. here is the issue with why I am so passionate about the Keith Hospital, the staff do not force anything on anybody, our able bodied old farmers – who may not know what day it is will willingly sweep the courtyard, dig out the garden and plant vegetables, carry laundry bags and help lift the heavy things as most of the staff is female. Just occassionally one will take his clothes off and the other will spit, these are small problems that do not need sedation they just need care and I am proud that Keith Hospital has this standard and will continue to do so as long as we survive


    • Thanks for sharing this, and let me RAISE MY FLAG LOUDLY here to say well done to the staff at the KEITH HOSPITAL. Perhaps they should collectively write a paper and have it published about what they are doing, for other service providers to learn from? I’m sure you could help them, and I would be very happy to assist also, expecially re where to get it published to have the loudest audience. May the hospitals doors stay opened forever.


  5. Kate, Thanks you for this post. Your explanation of issues and treatment are really interesting in their own right. As interesting is your ability, your IQ, to write so well and creatively about such a complex situation, 3-4 years after diagnosis, that is a real eye opener for me.


    • Hi Paul, Yes, it is an eye opener for many to see someone so positive in the face of dementia. As you well know I am guessing, a lot of the time it would be very easy to give in to it and not be positive. I am glad too that you found my explanation of issues and treatment of value. Take care, Kate


  6. on tuesday mum was over from tumby and i took her to visit her sister who now lives in an aged home. i sent text messages to a few others and we all met there and had a lovely visit. i noticed that betty was very aware of all around her and recognised all present. mum took her a jar of crystallised ginger and she had a piece, counted us and informed us she was not sharing as there were too many of us. it was a fun few hours with lots of chatter and i was so glad i made the effort, for all concerned benefited from this visit. mum and her two brothers caught up with their sister, betty’s son could visit his mum with a few laughs, as although he visits twice weekly at times she can be tiring. his wife also has dementia and he has had to stop working to devote fulltime care. it was a wonderful afternoon and i am sure betty enjoyed herself much more than the bingo she was playing when we arrived.


  7. What a great insight. You offer a truly valuable insight to these providers. I HOPE THEY ARE LISTENING AND LEARNING. I am everyday.


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