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10th July 2020

Barriers to Realising Human Rights for People Living with Dementia in Care Homes

Human rights and deprivation of liberty are at the forefront of policies and reforms when considering how to improve the quality of life of people living with dementia in care homes. We strive to provide person-centred care and promote independence, but sadly the care that we provide does not always provide the quality of life for our residents that we would strive for. What is stopping us? What are the barriers we face?

People living with dementia, their families, carers and professionals associated with their care are increasingly making their views known. They don’t want to be confined in institutionalised care settings with locked doors, bed rails and lap belts. They need ample space inside and outside as well as access to other outdoor recreational areas for fresh air, exercise and to enjoy nature (Steele et al June 2020). And why wouldn’t they? If this lockdown has taught us one thing it is that freedom and fresh air is essential to our wellbeing.

There is evidence that the “safety features” used for “protection” such as locked doors, high walls, fences and immobilisation in deep chairs can actually increase depression and agitation and lead to attempts to escape. So, if you are removing someone’s walking frame or placing a table in front of their chair to stop them getting up, stop to think why you are doing this. Is it for your benefit or theirs? Sometimes it may be necessary in the short term, but is it the least restrictive option? Imagine how you would feel if you were wedged at a dining table unable to get out. You need a wee, your leg is itchy, you’re confused, and you can’t make your wishes known. How agitated would you be? I’m pretty sure my shrieks would be heard all over the building and missiles may be thrown at unsuspecting passers-by!

The families of people with dementia rightly place high priority on physical safety, yet they also want plenty of activities to be offered that may carry risks of accidents and falls. We are focused on keeping people “safe” and constrained by lengthy risk assessments. By the time you have considered all the risks for a particular activity, you may be too cautious to proceed for fear of backlash from family or being sued if things go wrong. So, we resort to the easier alternatives that probably don’t promote the quality of life we strive for. The last thing any of us want to do is telephone a family member to tell them their loved one has fallen and broken a hip.

The increased restrictions of COVID-19 have no doubt compromised the human rights of those with dementia to protect their safety. Worryingly, there is evidence that this may have contributed to people with dementia becoming more confused, immobile, depressed and just giving up. We cannot remove all risks, but we need to keep striving to balance these restrictions with person-centred care that respects human rights and maintains overall well-being and quality of life.

To promote the wellbeing of people with dementia, they need access to mobility aids, fresh air and exercise, and meaningful activities to prevent deterioration and distress. Positive changes are happening all the time in dementia care, but we must continue to fight for more resources and advocate on issues relating to communal access, recreational activities, exercise and meaningful activities in care homes.

*All information is correct at the time of publishing. Use of this material is subject to your acceptance of our terms and conditions.

Katie Farrar

Occupational Therapist

Katie qualified as an Occupational Therapist in the year 2000. For most of her professional career she has worked in the field of older people’s mental health services within community mental health teams. As part of this she has had extensive involvement with people with dementia and their carers, both in the community and in care home settings. Katie is currently working with the Dementia Pathway Team supporting people with dementia in the care home setting and particularly with advanced care planning for end of life care. She has also recently completed the Mental Health Act Best Interest Assessor Course at Leeds Beckett University. Katie has developed and delivered training to care homes on dementia awareness, managing delirium and managing challenging behaviour. As well, she has supported carers to offer meaningful activities and experiences and provided guidance to care homes on improving environments to become dementia friendly. Read more

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