Safety vs autonomy in residential care

Screen Shot 2015-08-07 at 1.13.13 pmI’ve been asked to write from a consumer’s perspective about whether I think the views of people with dementia could influence the design of residential aged care, and if there is a difference between the view of people with dementia and their families about what a care home should be like. It has been a difficult task, and is for now, still a work in progress. But I do have a few initial thoughts… mostly about what a care home should not be like.

There is little doubt the view of the family care partners versus the person with dementia are vastly different.

We want autonomy. They want us to be safe. .

We want freedom and a front door key. They want the doors locked to ‘know that we are safe’. We see and feel like this as being in jail.

We want to walk. They see our walking as wandering, and want us to stop wandering, seeing our desire to continue walking as a ‘challenging behaviour’.

By the time we probably do need residential care, we may not know we need care, and we certainly don’t want to be in care. If we become angry or upset about being ‘made’ to move there, we are viewed as having ‘challenging behaviours’, rather than people who do not wish to go and live with strangers, or leave our own homes.

We want to continue to live our lives, in our own homes, the place we are familiar with, and have always lived. However, we are sold the concept of residential care being our new home. So, if it is our new home, why are we are not given the key to the front door of our new home, or at least the back door, out to a garden. How can it be our new ‘home’, if we can’t get out?

On top of this, we are expected to live in a commune with strangers, and eat in dining rooms with people we have never met, and may not ever get to like.

We are told it is good for us to go to the activities room, and participate in the various (or not) activities provided, at the times on the printed timetable stuck on the door in our single room with our single bed. More often than not, these activities are just ‘time fillers’, with no inherent value other than socialising, and with people we may not consider friends.

Meaningful activities don’t only have to engage people, they have to have some value and inherent purpose, for them to be of any real benefit… a reason to want to get out of bed. This point is missed in almost all activity or life style coordinator programs that I have read about or seen. Activities are for the most part, simply ‘time fillers’.

And then onto the topic of our bedroom, in our ‘new home’. Yes, a single bed. If it was really our home, we would be in a Queen, King or at least a double bed. Oh, and this room, supposedly our personal, individualised private space, cannot be locked, nor do we have a key to it, and rarely does anyone knock to enter, they just come in when it suits them, We might be resting, or wanting to be alone, but no, when it is time to eat, or to be bathed, or go to an activity, we are disturbed, often without the courtesy of the visitor in ‘our home’ asking if it suits us.

At some other stage, I will think and have a go at writing about the views of people with dementia could influence the design of residential aged care… The whole topic is though, a real conundrum, as our safety is almost always put ahead of our rights to autonomy and to take risks, including the risk of staying in our own homes.

31 thoughts on “Safety vs autonomy in residential care

  1. Pingback: How much fun is someone with dementia allowed to have? Safety vs Autonomy when capacity is compromised |

  2. I agree with all the points you are making, but all people who care for a loved one with dementia don’t want safety above everything else. I look after my 89 yr old mother who has vascular dementia and mixed Alzheimers. I am youngest of four, my siblings want mam in residential care, the whole safety card is played but,it’s mainly to rid them of their couple of hours a week they help,out. Mam went into a care home for one week ( I had a breakdown, she was put in against my wishes) it was the most devastating thing I have ever witnessed. One week, and everything you say happened, mam didn’t show challenging behaviour, she tried to fit in and communicate, but she cried and begged to come home every day. I went every day and put her to bed on a night as it was then she was most frightened, she had a key for her room but so did the staff, so not sure what the point of that was, she would lock her door then every hour a member of staff would unlock,it to come in and check her, she would wait till they went out get up and lock it every time, this went on all night. The most frightening thing was how social services and the staff at the care home manipulated things to try and make it look like she was better off staying there for her own safety. Because I was emotional they were implying I was not fit to,look after mam, eventually I got sisters who are both lpoa to allow her home on the promise that i would do all the caring for her. She lives in her home she has lived in for over 50 years, I stay every night, she has her dog and her garden and her queen sized bed ! Her dementia is progressing but we live and laugh and sometimes cry, I believe this is where she wants to be, I hope I’m right x

    • Thank you so much for sharing your own personal experience of supporting your mum with dementia… and keep doing whatever feels right in your heart. Cry, laugh, be kind and gentle, and love a lot. I feel you are right xxx

  3. Okay – but I am just saying that, as mum’s primary carer it is ME who fights for her right to go out and to take risks. It was me who signed the form to say we would not hold them responsible if she met with a mishap. The single thing that helps where she lives is the kindness of neighbours and strangers who bring her safely home again. We need the world to be a more humane and understanding place.

    • Kindness goes a long way… and would change so many things for the better. Keep fighting for what you believe in is right for your Mum, and of course, we ar all different, and what is right for me, may not be for someone else xx

  4. This is a very important topic, Kate. I could write a book on this! I am interested in seeing your write-up. The topic ties up neatly with some of your other blogs especially the one about people doing to others as they would want to be done to.
    Everybody wants autonomy, independence, freedom to take “informed” risks, and ill-health does not diminish these fundamental needs. Family members and friends also feel they have needs – a need to feel they are doing their best for their loved ones with dementia; a need to feel less guilt when they know they can no longer cope on their own; a need to ensure that their loved ones are “safe”.
    Governments in most countries legislate to ensure a near-normal environment in care homes, thereby unwittingly putting restrictions on any “adventurous” providers. Safety comes first in those legislations. Hence you see single beds rather than sprawling ones, and locks and restricted movement everywhere. Legislating without a bit of common sense and empathy is part of the problem. But the biggest problem is money. Care costs. Adequate staffing levels, for example, would drain the coffers. Some service users might just require one care-giver spending 6 hours in a day to assist them, whilst others might need two round the clock. Also on funding, personalising individual service user’s environment would mean replacing/repairing individualised items when they become faulty – a costly undertaking.
    In an ideal world, everybody would remain in their own home till the day they die; they would have a choice of whether to go into care or not, and when; they would take risks as they see fit; they would have all the funds required to enjoy their way of life. In an ideal world, there would be no Dementia…..

    • Kiki I just worry that especially in the uk, it’s becoming the norm oh mams got dementia best get her into a care home, then you hear the unfortunate heartbreaking news that she’s refusing to eat, and she’s staying in her room, all blamed on dementia, not many smack their hand on their forehead and say no she’s refusing to eat because she’s devastated and depressed, she’s trying to communicate and tell you but it’s not being heard. My best friend cares for a lovely lady who this is happening to and she has now been told she is in the last days of her life. She has successfully,looked after her in her own home and then in assisted living for over 15 year, her weight and size became a problem she had several falls, shipped in and out of hospital around 10 times in 8 weeks, assisted living wouldn’t take her back so she was admitted to a care home, where the deteriation quickly consumed her, it’s tragic. I hope we all keep fighting for our loved ones to,keep them as well and as happy as we can. I know there’s got to be some great care homes out there just my own experience they have been so so awful x

      • Thanks for sharing your personal stories and experience here… it is important we acknowledge and recognise they are not all good, and not all bad. It is, for me, very encouraging to see so many people working hard to make ‘good’ the norm.

  5. A very important conversation to have and many / some / most? residential care homes are as you describe. However thankfully not all. I wonder if we can encourage those of us who are trying so hard to be what they need to be if we are constantly told we are all the same and failing? I’m not sure what the answer would be as there is most definitely a need to highlight what is so wrong with so many residential homes, but I think it is important at the same time, to showcase what is good and working.

  6. Kate, a number of care partners want the same for the person they support as they would want for themselves, ie privacy, keys, large queen beds, somewhere for visitors to sit, a small frig, free IT access, ongoing links with our communities, friends & family…however defined.

  7. I’m so pleased I have resisted the suggestions of those who have suggested I become Maureen’s jailer. If I had strayed down that road she made it quite clear she would leave me! Stroke she may have had but thankfully she is still the full shilling!

    • Well done Paul… and I am glad it is working for you and Maureen. I read your struggles, and challenges and it scares the hell out of me some days, but I also know my husband is on the same page as you with how to best help me. xox

  8. I have struggled with the lock her in approach. Colleagues on T P say ‘keep her safe, lock her in and hide the keys’. I am not prepared to do this If I take away Maureen’s liberty and become her jailer all is lost. Sounds like Prescribed Disengagement dominates the thinking on T P.

  9. Kate, what to say is so true!

    However, to be fair to those of us care partners who would rather see the people we love and who live with dementia engaged with life and living in their own homes but who, like me, are not in legal control of the care situation, please know that it’s not within our power to do as we and our loved ones would wish.

    Also, some people simply cannot muster the resources financial or otherwise to keep someone living with dementia in their own home.

    I don’t know how communities can be transformed to meet the needs of people with dementia on a mass scale, but I hope we find a way to make it happen somehow…

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