A Human Rights Commission report raising concern about admitting people into secure dementia units without their informed consent fails to acknowledge the difficulties in obtaining consent from people with cognitive impairment and the processes that providers rely on to ensure the safety and care of these residents.

The report, ‘This is not my home’, contains a collection of essays from lawyers, doctors, academics and a District Court judge and does not necessarily represent the views of the Commission.

In the report’s foreword, Disability Rights Commissioner and acting Chief Human Rights Commissioner Paula Tesoriero expresses her concern at “the systematic paternalism within our community” with regard to people being admitted to secure dementia units against their will.

“These individuals live in locked facilities and are prevented from leaving. Even if they are compliant and do not object, they have their liberty and personal choices curtailed.”

Tesoriero says the report was “concerning to read” as very few people in secure dementia units had “formally consented to being held in these locked facilities”.

Alzheimers New Zealand has welcomed the report, saying that sadly people with dementia often have their ability to make choices and decisions overlooked.

However, aged care providers argue that people admitted to secure dementia units typically lack the capacity to give informed consent. Instead, providers must rely on robust assessment procedures.

Chris Sanders, General Manager at Sprott House says there are a number of legal safeguards in place to ensure this issue is navigated correctly and ethically.

She points out that there is a “significant amount of input” before a person is admitted into a secure dementia unit. While a person’s Enduring Power of Attorney is included in the decision-making, the most important trigger for admission is the assessment process.

“Nobody can be admitted to a dementia unit until they have been assessed as requiring that level of care.

“Unless I’ve got a psychogeriatrian or a psychogeriatric consultant who has assessed that person as needing that level of care I would not accept them into my dementia unit.

“We’re very, very clear about making sure our paper work is in order. The risk of not doing that is too high.

“With the advent of interRAI there is a lot more ongoing assessment of people so people living in dementia units are assessed at regular intervals.

Sanders points out that assessment will have taken place over a number of years. She describes it as “a life process where incremental change has led to a point where there is the risk of harm”.

Sanders says having dementia is not itself a ticket to a secure unit.

“You’ve got to remember that not everybody with dementia is not in a secure unit.

“We have someone in our rest home who could easily be in a dementia unit – but she’s not a wanderer and she doesn’t exhibit any difficult behaviours. She’s what I call the ‘gently demented’.”

Sanders says although technology is advancing all the time, currently there are no reliable alternatives to secure facilities.

For now, Alzheimers New Zealand is calling for the government to fully and urgently implement the NZ Framework for Dementia Care, which would help to ensure a better quality of life for people affected by dementia and their care partners.

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