By Marvin Ross
I always thought that the only area of medicine that applied absurd political correctness concepts to the detriment of those needing help was in the treatment of those with serious mental health illnesses. I was wrong. And note that I am not being politically correct when I say mental health illnesses rather than mental health issues and problems.
Readers of this blog probably need no introduction to one of the main deterrents to treatment for people who are ill and do not know they are ill. In most jurisdictions in North America, it is hard to hospitalize someone against their will when they are very ill because we bend over backwards to defend their rights to not be hospitalized. Better to let them live on the street or be in jail than to force them into a medical institution.
Sadly, Ontario goes even further by allowing someone who is hospitalized involuntarily because they pose a danger to themselves or others to then refuse the treatment that will enable them to get well. Consequently, there are people in hospitals for years left sick and untreated because we respect their right to not take medication.
It turns out that we apply the same stupid rules to those with Alzheimer’s. In Ontario, at least. A number of years ago, I arranged for my mother to go into a nursing home because she had dementia. She had been assessed at a geriatric facility in Toronto described as “a global leader in geriatric residential living, healthcare, research, innovation and education, with a special focus on brain health and aging”. She did not have Alzheimer’s but dementia which was visible on MRI studies of her brain.
As a result, I had no difficulty finding a suitable nursing home for her. She was not happy going into it but she did become a long term resident for probably well over 20 years, enjoyed her stay and was well cared for. It was probably the mid 1980s when she went there.
Fast forward to today and I am the power of attorney for someone with Alzheimer’s as his family is spread around the globe with no one locally to look after his needs. The disease has robbed him of his ability to have any insight into his diagnosis much like anasognosia for those with serious mental illness. His Alzheimer’s was diagnosed by a leading Toronto hospital affiliated with the Faculty of Medicine at the University of Toronto. He has been assessed countless times with the standard mini mental status exam and it is obvious talking to him that he has dementia.
But here is the thing. He is not capable and while he lived alone, he had to have substantial support at home and he was going to a day program for those with dementia. When a spot opened for him at a very good home for dementia patients, we arranged for him to be admitted. He refused, of course, and as his power of attorney, I was worried about moving him and selling his condo. I spoke to the social worker at the geriatric unit who told me that his test scores were bad and that if I listened to him and did not have him placed, I would be remiss in my duties.
Two members of his family flew to Toronto and had him placed there. He got used to it and is happy and safe.
The problem for the future is that the home is not capable of providing intensive nursing care so their residents will eventually need to be moved to a nursing home. With the aging population, there is a shortage of these beds and a long waiting list. Beds in acute care hospitals and dementia homes are held by people who need nursing home but are occupying beds until a place opens up in a more appropriate setting, As this individual is starting to deteriorate, I tried to fill out an application for a nursing home to prepare for his future needs.
Turns out that is now complicated. Ontario has a bureaucracy called the Community Care Access Centres which co-ordinates home care and placements. It is a huge bureaucracy which no longer exists by name as it was merged with another large bureaucracy but the functions are there. My charge has a case worker who authorized some minimal home care for him and did periodic assessments. I called her to get an application and left a voice mail.
Next day, I received a call that they cannot send me an application because his file is inactive and I have to start intake all over again. It will only take a few minutes and I was transferred to someone else who took down the information they already have. I was told I would get a call to arrange a new assessment. Another one.
I then got a call from someone who I could not understand on my my voice mail but I did get the phone number and extension. I fully expected the person who called to answer but no, I got someone else. She had no idea who called me or why but found the name of the case manager who would call me. When I did get to talk to the case manager, I was told that she must do an assessment because his last assessment was a year ago and his status might have changed.
Of course it has, I told her. He has Alzheimer’s which does not go away and is progressive. In the past year, he has gone to living alone with support to needing a home. He now has a small GPS device in case he gets separated from his caregiver while out which did happen. And he will continue to deteriorate and will eventually need a nursing home. I wanted to put in the application because it can take 2-3 years to find a good one. Regardless, she said, I have to test his competence and tell him we are applying for a nursing home.
But if you tell him about a nursing home, it will set him off and he may not recover from that. He denies he has the disease and he thinks he is employed at the day program he goes to. His competency can be assessed without the need to tell him. I have to tell him she said. It is only fair and I cannot hide it from him.
As a result, I told her no. I will wait until he deteriorates to the point where his placement is an emergency and he will remain in a bed that someone else could use until the system finds him a place that is more appropriate. This is a problem that is happening throughout Ontario. Patients blocking beds in acute care hospitals they do not need because they need a nursing home and can’t find one. And the blame for all this goes to the bureaucrats.
Since this encounter, the Canadian government announced a $50 million dementia strategy that includes prevention and anti-stigma. Sound familiar to the mental illness advocates? How does one prevent Alzheimer’s and other forms of dementia when the causes are not known? What does stigma have to do with anything. As an aside, I wrote a book on Alzheimer’s in the late 1980’s and nothing has changed from then. Same with our treatment of schizophrenia. My 10 year old book on Schizophrenia is pretty much as relevant today as it was in 2008 when it came out.