A Changing View – New Insights into People with Dementia & their Care (Community story)

Community Article

By Chris Bell ©Dementia Care International

A sudden and devastating stroke took a growing conviction that my mother-in-law had dementia to a definite diagnosis and urgent need for facility care. Beyond the diagnosis and admission, none of us considered or realised that we had the power to keep hope alive for a positive future for her. We simply accepted that the shocking blow was tragic and there was not much we could do.

Now I know better and that dementia does not have to be all doom and gloom.

I also know that visits to facilities can be joyful and not merely painful, depressing obligations. I’ve learned that we can’t change the person with dementia but we can change how we view the visit; and how we go about it, which can make each time into a special event. I’ve discovered that I need to take the joy, colour and fun in with me and not expect it to appear simply through interacting with our darling Mum. Now that she is in the later stages and has become more insular and not connecting with us being there, I have become inspired to put the Spark of Life Philosophy into effect and also to smile and include any resident in listening range in our conversation, smiles and presence. I have discovered that we can bring joy to more than just our own family member during a visit, especially once communication is more difficult. The delighted responses from other residents can help ease the pain of those times when I cannot seem to connect with Mum. I feel so good when I can pass on the joy of a visit to someone. Through Jane and DCA, and earlier the presence of Jane’s Mum, Kisse, I have learned that joy is in the little things, smiles, the clapping of hands and finding sheer delight in a flower or a bird in a tree. I can now appreciate more the simple every day pleasure my Mum experienced in the folding of napkins or in watching the bushes outside her window delight her again with each new recognition rather than mourning all that she can no longer do.

Bus stop – When I first read about the bus stop concept in dementia care, I originally thought it a great idea to satisfy the urge in people wanting to go home. I entirely missed that it wasn’t satisfying the need, but merely offering something to occupy the person. Now I see the bus stop more as disrespectful – a band aid measure applied because people with dementia won’t remember in five minutes. But if they so desperately want to go home, there must be an underlying need. What are they not getting at the facility that makes them want to go home? If they have no memory, why do they remember home? Everyone knows what home represents for them and now it is so obvious to me through DCA that the elements that home represents are missing for the person in residential care and it is those things we need to work on putting in place, not a bus stop. Isn’t it better to fulfill the needs home provides, such as love, security, feeling needed and giving back in this reality rather than sitting someone in a mock bus shelter waiting for a bus that never comes?

People with dementia are not generally physically ill and can participate in many meaningful ways. Their activities should have purpose and fulfill the basic human need to feel needed and useful and in turn have their self-esteem lifted by the satisfaction of a job well done and the boost we all get when our efforts are appreciated. Activity programs can be really joyful, not just time fillers.

People with dementia thrive on being part of things and really need more than being left to sit in a chair in a day room in front of a television. For those who are in the early and middle stages and happy to be occupied, the majority of their day could be inspired with familiar, meaningful activities like ones they might help with or do if they were at home. I understand the inclusion of these type of activities would depend on many things including family perceptions of unpaid help, and the stage of dementia. However, I also realise now that residents are not necessarily sitting in the chair nodding off or gazing into space because they are tired or interested in dust specks floating in the sunbeams or just because “it’s part of dementia”. More often, it’s because they are bored or discouraged or totally uninspired to do anything. I watch now when I say hello or make a comment to residents whom I don’t even know; their eyes light up and they respond and become more animated. I don’t know or understand yet why residents rarely seem to speak to each other in the day room or around the dining table. This is an insight I’d really love to gain, especially if there was a way for me or others to encourage positive interaction between the residents. (I don’t know if this lack of communication between residents happens everywhere or just where Mum is though.)

If dementia ever visits my family again, I will ensure I have a say in decorating the person’s room in the facility, including which things should go with the person. I didn’t feel free to change curtains or decorate this time. I didn’t even know you were allowed to. I also went along with the general fear that we couldn’t let Mum have her lovely things around her because what if someone took them or they went missing. Now I think, label everything and if someone else calls by and “borrows” a treasure for a while, it will eventually turn up again. Obviously I wouldn’t send a valuable family heirloom but certainly the special things that the person still treasures.

We used to hold gatherings in Mum’s honour with her 7 siblings and their partners – a large, laughing, noisy crowd – and then we would all feel disappointed when she wanted to go back to the facility after a couple of hours. I now understand that people with dementia do not like or even tolerate a lot of noisy laughter and external noise because it can really disorient and confuse them. I recognised and learned through Kisse’s presence at our office parties that though she delighted in presents and happy gatherings, she did not enjoy or tolerate lots of noisy revelry or loud laughter. Though Mum handled our get-togethers quite well, the sheer numbers and general noise ensured she did not enjoy any real participation or interaction. I wish I had been better educated or more knowledgeable on people with dementia earlier, but, for some reason, we just accepted the irreversible deterioration and devastating diagnosis without question. When Mum’s symptoms and reactions were labelled as “just part of the dementia” we accepted without question. It didn’t occur to us to look deeper to a need. Now it seems blindingly obvious.

I have gained a greater understanding and acceptance about seeing Mum as the person she is now rather than trying to maintain the one we’ve always known. I’ve learned that it doesn’t matter if she comes out with her shirt buttoned haphazardly if she has managed to dress herself and is so proud that she has done so. Once I would have believed that I would fight to maintain the person my own Mum or Dad had been too, knowing that they’d rather die than think they’d walk around wearing two shirts or not looking well dressed. My mother-in-law was very poor throughout her life but placed high value on stepping out neat and tidy. When she couldn’t have her teeth in due to ulcers and needed new dentures, I was horrified that they were not going to be replaced. I knew Mum would be distraught to be going around without her teeth; not to mention that she would only be able to eat soft pureed foods from now on, but I was forgetting one very important point. Mum is not the Mum we knew. In the later stages of dementia, she doesn’t care if she’s not wearing her teeth or that her food is minced. At least she shows no sign of it. Would the alternative of distressing her to fit new dentures and the subsequent pain of getting used to them be worth it? For whose benefit? I prided myself on having great empathy but missed these points entirely. I now know it’s so important to ask: What does it matter?’ For whose benefit are we doing this? The person we loved is simply a new person we love too. Mum is not the same as the Mum we once knew; and life is happier now that we have accepted the changes and no longer try to impose the persona of who she once was upon her.

Jane Verity taught me a most wonderful lesson in how we can totally change a new acquaintance’s perspective regarding our family member with dementia simply by how we refer to them. By introducing her mum to new people ie: hairdressers, shop keepers, in fact, all they came in contact by saying, ‘And this is my beautiful mother, Kisse,’ Jane ensured that the new person immediately saw, not a person with dementia, but Jane’s beautiful, loved and valued mother. Jane’s positive view of her mother was passed on to all others who met Kisse through this approach. What a wonderful insight? How we value and perceive our family members with dementia is how the world will view and treat them too. I strongly suspect it affects how we cope and respond to them too.

It was a huge insight to learn that behind everything a person with dementia says and does is a meaningful reason. Too often, once people with dementia have lost much of their language, we tend to think that they don’t know what they’re saying. I often followed my mother-in-law’s meaning even though I couldn’t understand her words; so it rang true to learn how only 7% of communication is through actual words. When my Mum would cry and desperately try to tell me something, facility staff would shake their heads and tell me, ‘Don’t worry, love. It’s all part of the dementia. They just get upset sometimes.’ I cannot believe that I accepted this explanation. Now I would spend a lot more time trying to discover what lay behind Mum’s tears. No wonder people with dementia cry and are depressed. We don’t ignore the person who is ill or in pain and tell their family, don’t worry it’s just part of the illness. We do something about it and the more pain a person is in the more measures we take to try to alleviate that pain. Why on earth do we say that the anguish of dementia is just part of it and not take all possible steps to ease the person’s misery by discovering the need behind it? Maybe people with dementia are just miserable sometimes, like we all can be, but with any other human beings beside those who have dementia or mental illness we do all in our power to find the cause and make them feel better. We wouldn’t walk past a stranger crying on the street without trying to see what was wrong. Why then do we do this to people with dementia?

Now I know of important ways I could make a difference. I, too, tended to focus on only the physical and not on the whole person. I accepted what I was told about depression and tears simply being part of dementia. I accepted that vascular dementia is worse and nothing can be done and that I just had to accept this was the way things would be. I know now through Jane and DCA that there are many things that I will change and get right if ever my own parents walk a similar path with dementia. I will look for every positive and not focus only on a devastating prognosis without being able to see beyond or sideways to ensure we pursue every opportunity to bring, inspire and rekindle joy in the person with dementia and now I truly know through Jane, Kisse and DCA that this is indeed possible.