Building a dementia tolerant society

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These days I feel a persistent urge to speak out about the issue of ageing. This is hardly surprising in the midst of the work of Australia's Royal Commission into Aged Care Quality and Safety, in the midst of my own worsening memory for the names of things and my partner's lessening ability to remember what happened yesterday, and after the terminal dementia of both my beloved father and former husband.

An older woman receiving birthday gift from friend in diner booth (Credit: Hero Images / Getty)The underlying tragedy will always be that the people who directly experience the condition of ageing and dementia do not survive to give us their evidence. But perhaps this puts more responsibility on those of us who can feel that they are drawing closer to it.

As I see our friends finding it harder to engage my partner and me in the entertaining conversation they have come to expect, I can see that our achievement and distraction-oriented culture is against us. But all may not be lost. Maybe we can change it. Look at the increased inclusion of disabled people in our community since the advent of the NDIS.

We are learning that people can be different in all sorts of ways so, why can't we accommodate people who are becoming repetitive or who cannot quite recall who they are? Surely we can learn to embrace such old friends and, if they become a risk to their communities, develop a signal like the white stick carried by the blind, so that we can look out for them in new and effective ways.

We must do something to hold our dear ones close to us and away from ghettos of so-called 'aged care' where their challenges are multiplied not only by under-qualified, underpaid and overloaded staff, but by engagement with others with the same problems.

Cultural change is what is needed. Most less developed countries do not share in our ever-expanding aged care industry and I suspect they have accommodated their aged, dementing and dying amongst them in, at least sometimes, more humane ways. How can we learn to do this? How can we, for instance, listen to friends who are becoming repetitive and forgetful so that we can meaningfully relate to them and keep them among us?

Vigorous conversation need not be our only meaningful link. Dementing people are the sum not just of what they can say to us today, but of what they symbolise about the parts of our lives that we have shared with them. They are a presence that can remind us that lives wax and wane, that our lives are vulnerable and that we become dependent on one another quite often. We have all been dependent as babies, in achieving joint outcomes in families, in work and in communities, and we become dependent as we become demented. Dependency is nothing to be ashamed of.

 

"Many of us learned to change the nappies of our kids in a loving frame of mind. Maybe we can develop the same tender intimacy with our demented friends in their final stages."

 

True, in the last extreme stages, when such a person may not know us or even accuse us of betraying them, they are going to need special care. But maybe this difficult and unthinkable stage would be less likely to occur in the ongoing company of known personnel, and more easily accommodated with a bigger team of people which included their loved ones.

When we are losing our memories, we need more and more people who have learned to love us to help us, not fewer. This means that we need, more than ever, to remain in the community which has known us. How can we learn to accommodate these people whose conversational and independent living skills gradually but surely fade?

We need to focus more and more on the particularity of the people we have loved. And we need to learn new conversational gambits. One which I have found works for me is to adopt the view that, when repetitive questions or comments are occurring, I think of them as 'choruses' in a song, rather than as a new 'verse'. Psychology has long demonstrated that such a change in attitude to what we are hearing can change our perceptions. Choruses are times to rest, times to enjoy familiarity, without expecting new material.

I can see my closest family learning this new listening skill but, for friends, it's more difficult. However, in the best possible world, I would see the royal commission propose ways in which we could all begin to learn to embrace and enjoy our ageing relatives and friends as part of a natural life span.

In this case I would expect it to recommend a massive increase in resources for mature and able adults to get together to enjoy sharing the presence and care of their ageing friends and relatives. This would involve considerable cultural change. But many of us learned to change the nappies of our kids in a loving frame of mind. Maybe we can develop the same tender intimacy with our demented friends in their final stages.

Learning to sing along with the chorus would only be the beginning.

 

 

Jill SuttonJill Sutton has written for government policy, for NGOs committed to social justice, for statutory bodies, for a leading activist, for her partner's sermons, for local poetry publications, for the Canberra Times and for Eureka Street. Her favourite things are teaching at any level and conversation over shared meals.

Main image credit: Hero Images / Getty

Topic tags: Jill Sutton, aged care, dementia

 

 

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I always believed that medical research was important to conquer the ills of Humanity and spent a professional lifetime pushing back the barriers. In some ways it was a great privilege to live in the era following the discovery of penicillin, the transplantation of organs and mastery over cardiovascular disease and once untreatable cancer. I look back now at what we have done and ask, "Why?" What we have done has caused so much human suffering by prolonging life to an age where other incurable diseases now dehumanise the sufferers. We now prolong life to an age where dementia raises its ugly head, where cancer and cardiovascular disease are far more common and incurable because age prevents some of the massive surgical treatments necessary. Rather than playing God perhaps we should have left some things to God - perhaps he alone is the best judge of what constitutes the life he has created. Pope John Paul II defined human life as the possession of that "unitary and integrated whole that is the personal self". Our modern medicine often prolongs a life in which that integrated whole is lost and impossible to regain. When I thought I was doing some good I now realise that I also did a hell of a lot of harm. Hopefully God will be merciful and forgiving when we meet face to face.
john frawley | 29 October 2019


John Frawley, I’m not sure what you are talking about. Medicine would have had no need to encounter those supposedly lucky people who died peacefully in their sleep in their 60s and 70s. Those who, courtesy of medicine, lived to die not as peacefully in the later decades would, by definition, not have been the ones who would have died peacefully in their sleep in their 60s and 70s. Instead, at whatever earlier age they would have died but for medicine, it wouldn’t have been peaceful. All medicine has done is given those who would have died unpeacefully while still relatively young a shot at dying peacefully when relatively old. As for dementia, isn’t it still a minority percentage in every age-band? Apparently, it’s still only 40% for centenarians. Old age is a natural time for prioritising eternity over what hopefully would have become a body that is uninterested in the usual fleshy and worldly things. A clear mind is a necessity for cleansing the conscience and soul. A clear mind in an old body is probably the best combination of attributes to make a person get serious about doing what is needed to be saved. Viva old age!
roy chen yee | 29 October 2019


Thank you Jill. I think you hit the nail on the head with "Cultural change is what is needed." When I first experienced dementia among friends and relatives I would ponder how traditional societies coped with so few "services" or "institutions" to house the "problem". After a moment's consideration I realised those societies were perfectly qualified. The patient is cared for, fed, actively engaged and valued in the familiar village they know, by their family, friends and community. A benefit and comfort to themselves, and also valuable life experience for all involved. Later I found this first-hand during my time in Pacific communities. The problem is that ours is not a communal culture, rather one of "collective individualism", where the healthy and able de-value the vulnerable and decide their "care". There is hope though for a rethink, as the recent experiments combining child and aged care show.
Kevin Wilson | 30 October 2019


Thank you for this article. My husband of 57 years has Alzheimer’s and it is frightening to see how apart from family how quickly our friends have stopped contact. Yes there is the occasional phone call of enquire but visits or invitations to coffee or lunch are almost non existent. Thank God we have a little dog and my husband still is able to take him for his daily walk. When he gets back home his mood is so much lighter and smiling and happy as he tells me of the other dog walkers he has met along the way. His beautiful smile at these times is such a joy. Back to family. How wonderful our children grandchildren and great grandchildren are as their visits bring great contentment, an Occassion to love and interact with the toddlers and to talk to all of us of the memories good and bad, funny and so different from our experiences. It is a joy to see the interaction as our family learn so much more about him and his long and interesting life. But it is still sad to watch as he dozes away his once full and active life.
Anne Chang | 30 October 2019


Mr Frawley's comment makes sense, in that to play god by interfering with the natural process of decrepitude may expose those rescued from cancer or stroke for example to the humiliating loss of control that is dementia. Medicine has also led to a serious overpopulation problem that is destroying the planet (not to deny the greed of rich nations) One could argue that antibiotic resistance might be god's way of reversing the arrogance and selfishness of those of us who want to live to ninety. A priest friend of mine who contracted golden staph in hospital had to have leeches to clean out his terrible sores.
Karis | 30 October 2019


Roy. Medicine clearly has done many remarkable and good things for the benefit of many who might otherwise have died but have been salvaged to live happy and fulfilled lives. I was referring to those Medicine has salvaged for a life of misery not only to themselves but for those who knew and loved them as the real person they once were. Anne Chang understands what I mean. Incidentally, I am not an advocate for euthanasia but very definitely a strong advocate for the sensible and considered application of medical technology. Humanity has an overwhelming penchant for abusing the great revelations of Science and Medicine for self interest, income and fame while ignoring the common good and the benefits or downside to others. And most health professionals are human! The old adage has it that the difference between God and the surgeon is that God doesn't think he is a surgeon.
john frawley | 30 October 2019


Thank you Jill, for giving voice to what is otherwise silence. Of course it hurts when my workplace in aged care is called a ghetto. Thanks, too for pointing to how the NDIS has changed the landscape for some people. But such an image of “chorus”... it so helps me. Please don’t dismiss the workforce though... I see acts of love every day.
Ross | 31 October 2019


Thank you for a very moving article and so important. But one should not generalise. Dementia does not always have a completely ugly head. I was inspired, for example, by the way in which a former Archbishop of Sydney in his late years with dementia (I was going to write "suffering" dementia - but that was not so in his case), was lovingly cared for by his family, still singing with a son (two sons being priests) the hymns he had learnt by heart and joining the prayers he also knew by heart from The Book of Common Prayer, even much else was hidden. (I wonder how many today are storing comparable memories. But as very old hospital chaplain myself and former C.of E. parish priest, I know it is not only those with dementia who are forgotten, very often by their Church, and sometimes by their families.
John Bunyan | 02 November 2019


Thank you Jill for this thoughtful and strong piece. I am experienced with family members with aged dementia and I am sure it is a cultural change we have to have. The expose of poor treatment in aged care facilities is an expose of how we think about aged relatives. I am saddened by the sad tales of individuals who think the failure of care is somehow only to do with care providers! We are all responsible and cannot expect governments and private businesses to take up the care of our beloved older relatives and friends alone. Some will need constant professional care but this does not exonerate the relatives from spending as much time with the person as they reasonably can. We are all 'busy', but care of children or the aged needs to be a priority not something we attend to when we have some spare time. For around 10 years caring for a relative I observed many, many aged people who did not have either any or just the minimum of visits which were often perfunctory and brief. I discovered that staff were grateful when I pointed out that someone needed some assistance or I discovered what I, as a visitor, could help them with. As a child needs a village in which to grow, our oldies need a village to care for them as they prepare to depart.
Jennifer Raper | 03 November 2019


A rather cheering article, Jill. My wife (62) has suffered Early Onset Alzheimer's - a form of dementia - for the last 2 years. It crept up upon us very quickly. Rita was always a feisty character. She still is. It's her words that fail her and she becomes easily disoriented. My example here is my father, who was magnificent for so many, many years, when Mum, a former headmistress and M.A. (London) became demented. I always saw Dad as a sort of John Masters/David Niven stiff upper lip sort of chap but he was far, far more. Gone now, sadly, but he stayed on the ball till he died at 94. I can't talk to him now, but it was his long term example which helped give me the courage to cope. NDIS is a godsend. We have had superb help from the doctors and nurses at the local medical centre, Queensland Health and the respite and home assistance from Ozcare (a spinoff from Vinnies) and respite from St David's (a work of a local Uniting Church parish). I guess these are part of a functioning community. We need to build on this as a nation.
Edward Fido | 05 November 2019


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