Locked in jail

For more than a decade, I have regularly stated in writing or verbally that I believe people living in residential care facilities with locked doors, or in secure dementia units, are locked in jail, and that the only other people who are also routinely locked in jail are convicted criminals.

Secure dementia units also equate to confinement, as well as segregation.

I still believe this.

My father on law, who had Lewy Body Dementia asked why we had ‘locked him in jail’, every time we visited him over a period of more than three years.

The guilt trip of the Century in this house…

It is also a large part of why people experience so many symotoms of distress, that have been so harmfully labelled as the Behavioural and Psychological Symptom of Dementia (BPSD), and why I am so passionate about banning BPSD.

Being physcially restrained, has also caused a second form of unlawful restraint, which we know as chemical restraint.

Anyway, I’ve been reviewing a number of articles I’ve been invovled in co authoring or writing, and doing a lot of other research on the topic, and today highlight a part of one article, Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes[1].

“Confining people living with dementia within residential aged care facilities through locked doors and gates can be framed as a violation of the right to liberty and security of the person, provided for by Article 14(1)(a) of the CRPD (Pyaneandee 2019, p. 25).

The UN Disability Committee has identified the right to liberty and security of the person as ‘one of the most precious rights to which everyone is entitled’ particularly for people with cognitive disabilities (UN Committee on the Rights of Persons with Disabilities UN Disability Committee, para. 3), and Article 14 has been identified by dementia advocacy organisations as a significant right, particularly for individuals with late- and end-stage dementia (Batsch et al. 2017).

Deprivation of liberty occurs when individuals ‘are confined to a restricted space or placed in an institution or setting, not free to leave, and without free and informed consent’ (Special Rapporteur on the Rights of Persons with Disabilities 2019, para. 40).

Article 14 requires that States Parties ensure that people with disabilities, on an equal basis with others ‘[e]njoy the right to liberty and security of person’ and ‘[a]re not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty’.

Confining people living with dementia through locked doors and gates inside DCUs, within the entire care home building, or within the outer perimeter of the care home grounds, constitutes deprivation of liberty.

Residents with dementia do not have the freedom to leave the premises when they choose because they do not have access to the means to unlock the doors and gates (Smith and Sullivan 2012).

This deprivation of liberty is unlawful where there is no legal order in place permitting this deprivation of liberty and, as discussed in Part 2 above, it is widely understood that, in some jurisdictions, locking occurs without routinely seeking consent.”

Read the full article here.

[1] Steele, L.; Swaffer, K.; Phillipson, L.; Fleming, R. Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care HomesLaws 20198, 18.

4 thoughts on “Locked in jail

  1. I’d also like to offer a viewpoint here.
    Whilst we might not agree that those with dementia should be in secure units, there is a reason for this. I have experienced dementia with my father in law and I also work in a secure unit (and outside of it).
    Before my FIL went into full time care, he managed to get the car, that had been disabled from use, working one night and took it out for a drive. (He was an extremely resourceful man lol). The windscreen was so covered in dirt from being stored in a shed, it was difficult to see through. This story has a happy ending because he returned unharmed and there were no accidents caused (Thank goodness). When he went into care, he attempted escape on numerous occasions but when we took him outside of the secure area he was disoriented and wanted to return.
    I can see both sides of this issue, but really having a person in a secure unit is for their own protection. Being in a safe environment where they can walk around and do their own thing is a better outcome than worrying about them endangering their lives if they leave. There are also issues involved when those whose families wish them to stay in the areas other than the secure unit. The person who goes into other rooms often meets with a hostile reaction from co-residents causing them distress (or harm), or they become a high falls risk because they enter gardens or other areas not designed for someone with dementia. That person can also find their way out of the facility and into a community that they don’t know. The staff working in the secure unit have a greater understanding of dementia than many of those who don’t work in it, and this can cause issues also.
    I do understand what you are saying Kate, but it is not a perfect world and those who care for people living with dementia do the best they can to keep both the person and others around them safe.

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    • Hi Suz, thanks for sharing your point of view. I once would have agreed with you wholeheartedly, but no longer do. Slowly, the world will be de-institutionalising our elders in resi care, and especially people with dementia, who we will also stop segregating. We do first though have to set up the suitable alternatives for those who do need assisted living, that are alighend to our rights as individuals, and where people are not detained. As you saym we do not live in a perfect world, but my goal is to aspire to one, or at least, to a world where we are not violating people’s rights. Take care… Kate

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  2. kate i have one question well two what if there are no locks or fences  and someone manages to wander out onto a road  and is hit by a car . or walks through a golf club like there is behind one village / care facility and is bitten by a snake . who is then held responsible . i see the  amount of times Veda gets away on Lynda and how quickly she does it . So who is responsible . and we have had this discussion before but i would rather be in a place where im not only looked after but cant hurt anyone else . you make much of peoples human rights  but what about people who do not have any form of cognitive impairment what about their human rights to feel safe . . Now i dont agree with people being locked in rooms or wards but if the version of dementia friendly care facility i have heard of is an thing of the future then i would prefer it to being placed in a place i wasnt wanted or safe from abuse or being taken advantage of ……But thats just my opinion  

    Hope this finds you well Kevyn Morris  

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    • Hi Kevyn, that questions needs a long reply, so I will do it via a blog when I have time. Also, lettign you know I removed your phone number from showing here for your security, as adding it publicly here might cause you to receve SPAM calls! Take care, Kate

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