Little things to look for in a care home

IT’S incurable, terminal and more than 300,000 Australians have it. At some point, one of your loved ones will have this disease —  and you need to know what to do.

Elderly group

Each week more than a thousand Australians are delivered the brutal diagnosis of dementia, a disease that’s incurable and terminal. It works slowly, steadily disabling the person, one memory or ability at a time. Often people stumble into the advanced stage of dementia before a formal diagnosis due to its subtle development. Loved ones watch from the sidelines as it distresses or exasperates the mother who never missed a birthday or impacts the intellectual husband they once knew.

As head of dementia services, Margaret Ryan leads Bupa Care Homes in the delivery of education for caregivers around a “person first” approach to care for people living with dementia. Part of her role includes breaking the stigma and correcting common misconceptions surrounding the disease.

One is the difference between dementia and Alzheimer’s. In a nutshell, dementia is an umbrella term for symptoms that affect mental cognitive skills. There are more than 100 different types of dementia, with Alzheimer’s disease being the most common. So in short Alzheimer’s is a type of dementia.

Another is the idea that Alzheimer’s, which accounts for about 80 per cent of dementia cases, is strictly a disease affecting memories. In fact, it usually involves many mental processes, including the ability to focus attention, organise thoughts and make sound judgments. It can affect emotions and personality, as well. But perhaps the biggest misconception is that although the disease is brutal, it doesn’t define the person.

“In the past, people were labelled by their condition. Historically, sometimes people were referred to as 'demented',” Ms Ryan says. “We need to break that stigma. You’re living with dementia; you aren’t dementia. It’s not your whole existence, and you’re not defined by the disease.”

She says care should be tailored to different personality types, life history and stage of the disease. When care is provided in a truly personal way, new possibilities open up. In Bupa care homes, for example, raised garden beds offer passers-by the opportunity to do tasks they’re familiar with like planting and weeding.

“We had a librarian in one of our homes, so they set up a little library station for her with a stamp so she could do a task she was familiar with,” she says. “It’s not about role-playing or pretending or anything like that. It’s just about meeting that need for that person and adapting to what is part of their identity and their history. It gives them a sense of comfort and keeps them occupied in a meaningful way.”

There are no blanket rules when it comes to the broad strokes of living with dementia.

“We have a person-first approach because that reminds our team members of who that person is first, and whatever we’re supporting them with comes after that,” Ms Ryan says. “We meet regularly as staff to educate about how dementia affects the brain and how it will be different for every person, because every person’s life experience is different.”

She recalls a recent situation where a resident became distressed when a staff member greeted him by name.

“It turned out the resident was formerly a judge so of course, he was confused. So it became, “Good morning, Your Honour” instead. It’s all about working out how we can communicate effectively with the person, how we can really understand and adapt our approach to who that person is,” she says.

Due to factors including the stigma attached to the disease and the importance placed on independent living, she says many families end up looking for a care home in a crisis situation.

“One of two things happen: either the person living with dementia has deteriorated due to something like a fall, or they’ve been found walking down the highway. Or a crisis has happened for the carer. Maybe they’ve become unwell. This is very typical in a husband and wife situation where they’re looking after each other,” she says.

Another scenario is when family members are just not in a position to take care of a parent with dementia. They might have a young family to care for or career commitments. They are often wracked with guilt that they cannot extend themselves to meet the needs of their family member.

“Usually the healthcare professional is the one to tell the family they need to find a care home. Often they only have a short period of time to do that in, and that’s very, very stressful.”

Ryan says future planning and upfront discussions can help reduce the stress. Knowing about the services, government policies and costs of residential care beforehand can help you make the best decision, even if the decision has to be made quickly. When the time comes, there are some things that families should consider when choosing the right care home (or type of care) for their loved one.

“What a lot of people usually do is get a lot of information about all the costs, the finance and the features of the home,” she says. “But my best advice is to look, listen and feel.”

She says to keep in mind a flashy building doesn’t make a care home; it’s the people and the feel of the place. When touring a care home, Ms Ryan recommends taking note of how the residents seem.

"Do they look relaxed and comfortable? Do they look dignified and cared for? What are the noise levels like? Is there engagement and activities going on?" she says. "If you feel comfortable, then most likely, your family member will too."

A good care home will provide opportunities for residents to enjoy activities independently and with others like knitting, puzzles or gardening. Check the noticeboard to see whether events are going on or personal things like birthday celebrations. The place should have a homely, familiar vibe.

“And are there personal things in each room? If every room looks the same I’d be a bit worried,” she says.

By the end of the visit, you should feel that your loved one will be treated as an individual and their daily life will be maintained with dignity. Choosing a care home is a difficult process, but if you start researching early and know the key factors to look for you can feel confident you are making the right decision.

Originally published as Little things to look for in a care home