Since being diagnosed with dementia and joining the global campaign by people with dementia to help improve things such as person centred care, and advocating for what are the most basic of human rights for PWD, it fascinates me we still have so far to go in achieving this.
Why are people with dementia having to fight so hard to be treated as whole and individual human beings, when virtually all other groups in our ‘civilised’ western society are accorded these rights?
What I find so curious about this, is people with dementia have always been ‘cared’ for by an industry sector whose whole focus is to care for people who are sick or infirmed! They are trained to ‘care’, and yet so many are not providing care that respects our humanity.
Dementia and aged care is definitely not ‘sexy’, and it is easier and cheaper to care for task needs rather than to care for the whole person It seems to me these days this sector is mostly trained to treat the symptoms of disease and illness, rather than the person.
Those who view involuntary restraint – physical or pharmacological – in aged care facilities or hospitals unquestionably and simplistically as a ‘best interests’ regime should be asking whether involuntary treatment in fact amounts to less favourable treatment. In terms of a person’s subjective experience, and the fundamental rights and freedoms so central to the a person’s human rights, it certainly is. This treatment of people with dementia often will have serious, debilitating and stigmatising side effects.
Something that should be understood about involuntary restraint, is that it usually involves a strongly felt and expressed resistance to the treatment, as opposed to an inability to express or make a decision due to an impairment relating to communication or cognition. The expression usually manifests itself in ‘behaviour’, and there will often be good reason for a person’s resistance quite apart from the restriction on their autonomy.
And don’t ever forget, the restraint is ALWAYS involuntary on the part of the person being locked up or restrained.
Being restrained – locked in a ‘secure memory unit’, given drugs to make us compliant, or using physical restraints such as being strapped to the chair or bed – is done with the justification it is for our safety, and helps aged care or hospitals comply with their duty of care (avoid insurance claims!!). As I see it, restraint is used as it is the quickest, cheapest and easiest way of providing ‘care’ with limited staff and funding.
In many cases, it is worse than being locked in prison. The person with dementia has not broken the law or done anything wrong, they simply have a degenerative cognitive illness.