Fredericton man with Down Syndrome, dementia spent 131 days in hospital; his family says he didn't need to

Jamie Aird has the type of smile that’s got to be more contagious than the common cold – he has everyone around him grinning in seconds.

The 59-year-old Fredericton man has Down Syndrome and dementia, and those familiar with the condition know he’s beating the odds.

Jamie spent more than 25 years working at the local Co-op as the egg manager, and became a well-known face in the community.

But a broken hip last June landed him in hospital for so long, his family says, that infectious smile became a rarity.

“He wasn’t happy, most of the time. Jamie’s a very sociable person, so if he was talking to people he’d be happy, but if he was stuck in his room, he wasn’t. He spent a lot of time in bed, or in a wheelchair, sitting up, sleeping,” said Jamie’s brother, John Aird.

Jamie had surgery, but recovery was slow. John felt there wasn’t enough staff to help rehabilitate Jamie’s movement, so one week led to several months.

“They didn't understand the Down Syndrome side of him, so they would talk to him in a language he didn't understand. They would talk medical terms. They would say, you know, ‘Do you need a bowel movement?’” John explained. “He doesn’t understand that… The hospital staff was good. They are understaffed, overworked. I don't want to say they didn't know what they were doing, but there was not a good understanding of the Down Syndrome side of things, plus the dementia, which made it difficult.”

Jamie had called the Southside Special Care Home “home” for over a decade prior to landing in the hospital. But about two months into his stay, John says a social worker did an assessment on behalf of the Department of Social Development.

It was done in the late afternoon, when Jamie’s dementia is often worse, and without his family present. Unable to communicate well – and in a wheelchair with weakened muscles – Jamie was deemed in need of a nursing home bed.

John says they weren’t changing their mind.

In total, Jamie spent 131 days in the hospital.

It was only when Jamie’s family, the owner of the Southside Special Care Home, and the president of the Special Care Home Association all got in touch with officials at the Department that Jamie was allowed to return to his familiar home.

A plan was drawn up to ensure Jamie had the right supports in place at the home.

‘Not everybody fits into the slots’

Special care homes in New Brunswick are staffed 24/7, but do not have round-the-clock registered nursing care. But a change in 2023 matches an extra-mural nurse to each special care home resident across the province. Staff at the homes can call those nurses for help anytime – rather than having to rely on paramedics.

Those are improvements Janice Seely says are making a real difference.

“There's not just one government department that we can blame for this. It's a broken system. The good news is that there's many good people working in the province, and I've seen more collaboration amongst departments in the last six months than I’ve seen in the last three decades working to repair and reform this long-term care system,” said Seely, who’s the N.B. Special Care Home Association president.

But she says change needs to continue for the sake of those still in hospital.

As of Jan. 1, the number of people waiting for a nursing home placement was 935. Of those people, 463 were waiting in hospital. The Department of Social Development has said about 150 New Brunswickers find a nursing home placement each month.

“I think about Jamie and his special care home operator that advocated hard for him and reached out to us and we did the same. But what about that frail 90-year-old that, you know, her husband's passed away and she's in hospital and her son lives in Alberta and she has nobody here to help her. That breaks my heart. So the urgency is now and it has been for many years, but now it's hitting a crisis point. So we need to fix this,” Seely said.

In 2023, the province added 195 new nursing home beds and 15 more so far in 2024. As well, the department says 18 memory care beds were awarded in Bathurst in April, 2023 and 40 Generalist Care beds were placed in Moncton in August 2023.

Jamie’s family wants more people in the system to recognize the unique challenges of patients with dual diagnoses – and that there’s not a one-size-fits-all solution to long term care.

“The government or whoever has to start looking outside the box and saying, you know, do we need to put people in nursing homes? Is that the final answer?” asked John. “Not everybody fits into the slots. You know, you just can't say that Jamie is the same as is me.”

Shortage of social workers part of assessment delays

Social workers are the ones who do long-term care assessments on behalf of the Department of Social Development. But there’s an ongoing shortage — New Brunswick’s Association of Social Workers says before the COVID-19 pandemic, the province was looking at about 275 vacancies over the next few years.

“So we are working with the province on a five year strategy to enhance the numbers of social workers and to also regulate a social work technician per profession that will provide that support so that is hopefully coming,” said NBASW executive director Miguel LeBlanc.

The shortage is one part of the reason why assessments can be delayed. But LeBlanc says there are also many moving parts, including paperwork that needs to be approved or signed off on by healthcare professionals.

“I believe that anything can be improved. And I am aware that there is an effort to try to improve the assessment. But it's complex because it's not just one profession, right. There's other pieces to this,” he said.

He did acknowledge the social worker is supposed to look at each client on an individual basis – and that the assessment is supposed to look at the person and their environment.

But there is a process in place, and that process is meant to keep the person safe.

Seely is still hoping that process sees some change.

“We need to make sure that we can speed up and reform this assessment system so that there's an urgency behind this. These people deserve it,” she said.

‘He’s back home where he belongs’

Today, Jamie is back to his vibrant self. He can make his way around his special care home with a walker, attends teatime with his personal support workers, and spends his days visiting with family, colouring and watching movies.

He’s even dancing. John says it’s a relief.

“It’s his home, he’s happy here. And the improvement since he's been here, his mobility improvement, his attitude, his happiness, it's just it's gone through the roof. So good to see,” he said.

It’s not necessarily permanent, Jamie is still technically waiting for a nursing home placement. But at least he’s waiting at home. 

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