Dementia care models must change, doctor says

Newfoundland doctor says it's time to look at dementia care models in other countries to tackle health-care crisis

It was an otherwise great New Year's Eve in 2018, with celebratory drinks among loved ones.

But by the end of the night, a moment Mallory Wilson and her mother, Valerie, had known was approaching was too obvious to ignore.

"It was the worst day of our lives. Much worse than the day he died, weirdly enough," Mallory wrote in an email to Saltwire Network.

Mallory's father Nicholas, who had dementia and was, by all accounts, a sweet and gentle soul, had become agitated when they tried to get him home to bed.

"He couldn't sit still or lie down," she recalls. "And when we tried to explain it to him, he took a swing at mom."

He didn't understand what he was doing.

Thankfully, he didn't hit her.

That's when Mallory's mother told her it was a nearly nightly affair.

All three began to cry. They contacted a cousin who was a nurse, saying, "We need help."

"I knew it was the last straw," Mallory says.

They had been reluctant to put Nicholas in a long-term care home. They worried loved ones would think it was selfish. As well, a bad experience Valerie had with her mother, who had Alzheimer's, made them worry about how Nicholas would be treated.

If they had adequate support in their home in Trepassey, maybe Nicholas could have stayed in the home longer, Mallory says.

But that wasn't the reality they were living in.

DENMARK

Her cousin told them to contact a social worker they had spoken with when they arranged for home care to explain the situation.

''The process happened fairly quickly," Mallory says. "He went into Pleasant View Towers Jan. 17,2019. They got him in as soon as a bed became available, which was surprising. We knew we couldn't pass up the opportunity."

But if this had been Denmark, rather than Newfoundland and Labrador, there would have been no longterm care home for him to go to. Or, at least, it wouldn't have looked in any way, shape or form like it does in this province.

Denmark stopped building nursing homes in 1987, Dr. Roger Butler explained in a video interview.

Butler is the medical lead for the provincial home dementia care program and helped author the "Aging Population" section of the Health Accord.

In a conversation that spanned more than an hour, Butler went through entire histories of changes in health care around the world, all while periodically fielding phone calls from patients and their loved ones.

But one statement rang out loud and clear: "We should not build another nursing home in this province," he says.

For someone who co-authored a section called "Aging Population," two words that come up in N.L. frequently, it seems odd to hear him say that.

But Butler is firm.

"We don't have the staff to look after them, and Number 1, we can't build enough to meet the needs. All we're doing is pissing in the wind, as a Newfoundlander would say," he said.

"Now, (Denmark has) no nursing homes. They look at alternate home arrangements and they have boosted their community supports like crazy. And they do it at twothirds of the costs we're currently doing it at."

It's not rocket science, Butler says. Despite it being unpopular politically, "You damn well can do it and we can do it better. And you will find that a lot of those beds that are currently being utilized will evaporate once we put the services in the community. People don't want to go into the nursing home to begin with."

KEEPING SENIORS OUT OF THE ER

Butler has been involved with dementia care since 1997. In 2014, he began to develop his concept of how it could be managed in the province. This led him to Australia. "Back around 2004 in Australia, there was a major lawsuit because a young boy went into the emergency department and died and wasn't seen by anybody," Butler said.

After an inquiry, Gideon Caplan, who is now an associate professor at the University of New South Wales' school of clinical medicine, was asked to devise a program to prevent seniors from filling the emergency department so younger people couldn't be seen.

He went on to investigate how to treat seniors coming into the emergency department more appropriately.

Years after that lawsuit, when Butler travelled to Australia for research, he found hospitals that could get patients assessed and out quickly.

"And what it is, is they have a team approach," Butler said.

At a certain point, if an older patient is lying around without being seen, they will likely get worse, he explains, because the chances of comorbidities increase.

"They get drugged out of their minds because they're getting agitated, then they get restrained, then the pressure sores and then they never get out of the hospital," he says.

"It has to be appropriate, and we've got to get you in quick and get you out quick."

What Australia did was challenge the status quo and the inpatient structure.

HOME AS HOSPITAL

Caplan began exploring what the ideal timeframes were for patients to be in hospital for a variety of diagnoses.

For a heart attack, for example, after seven days with physical rehab, patients don't need to be in a hospital.

"(Caplan) said to his colleagues on the floor, 'Why don't you discharge those people and I'll follow them at home,"' Butler said.

He was told he couldn't do it as all the occupational (OT) and physiotherapists worked out of the hospital.

Caplan proposed sending all the appropriate health-care staff to the home for the same number of hours a patient would get in the hospital.

"And under that circumstance, they agreed," Butler said.

It cost two-thirds less by offering therapies in a patient's home. And there was one more benefit.

"And guess what? They recovered at rates of 100 to 200 per cent faster. Why? Because they're in a familiar environment. They're not getting drugged out of their minds with sleeping pills."

For people with dementia, sleeping pills can put them into a delirium, Butler said.

'OUR CURRENT THINKING IS FAILING US'

Eighty per cent of nursing home beds are filled with dementia patients, Butler says.

"We don't have enough beds now to cope with the geriatric crisis," he says.

"We've got to say, 'Our current thinking is failing us. We cannot afford to spend another billion dollars a year on nursing homes. We don't have the money.' The cost now for me to house your mom, if she has dementia, in a tertiary care nursing home is $120,000 a year."

In 2014, Butler put together a research project where he took 20 families - 10 in a test category, 10 in the control group - all ofwhich had a comprehensive assessment. Then he sent a letter to their family doctors with recommendations. This could be anything from putting in a railing to lowering a drug dosage.

The control group had the usual care from their famthe ily doctor and the test group was followed by Butler every week with a phone call and an app he had made to track for depression, delirium and caregiver stress.

"In the 10 that I did the frequent call back on, guess what? None of them ended up in the nursing home. Not one," he said.

Since then, the federal government put $1.7 million, which the province administers, into a home dementia care program. A total of 475 families have gone through, or are in, that program, Butler says.

"If they were on a nursing home trajectory when they got in our program, we doubled that length of time. We've halved the time in the emergency department," he adds.