How should we care for residents with dementia?

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Forgetfulness is a natural part of the ageing process but people who suffer from dementia or Alzheimer’s Disease are often viewed and treated differently.

Caring for residents who are experiencing cognitive change is now a key issue that every aged care residential home must deal with. An estimated 70,000 Kiwis are living with dementia today but that is expected to rise to 170,000 people by 2050.

So what are the key challenges for our aged care workforce? And what is the best way to care for these residents?

Wants & Needs

A qualitative research report released by Alzheimer’s New Zealand in April this year says those with dementia value being able to take care of themselves. They want to shower or bath without assistance and do household tasks. Their daily activities are important in defining how they see themselves and  they wish to continue hobbies they’ve always enjoyed to stay active, maintain friendships or establish new ones.

Many people with dementia are healthy, mentally alert and maintain a sense of purpose. While forgetful, most describe themselves as capable of thinking and reasoning and with the right information, enough time and support they can make decisions.

The report also highlights the importance of meeting the cultural needs of Maori and Pacific people including culturally-appropriate food to provide comfort and familiarity. For example, providing food from the earth, not out of a packet.

“Having appropriate food is a way to build trust between residential care staff and the person with dementia,” the research report says.

The aged care sector must also look at meeting the needs of people through language. One man the researchers spent time with only spoke Te Reo as he declined, which limited his interactions with people.

Opportunities Ahead

Age Concern NZ Chief Executive Stephanie Clare says we have a changing demographic with a growing number of Asian, Maori and Pacific peoples entering aged care facilities, many of whom will be affected by dementia or Alzheimer’s.

“We’ve also got an increased opportunity to then meet the needs of these communities who currently we maybe don’t serve the best we can. That could be around providing culturally appropriate food, activities or language – just saying ‘bula vinaka’ or ‘kia ora’. We need to think about how we can be a bit more innovative in this space and how can residential aged care staff, who are our best resources, harness, drive and influence that change.”

Stephanie travelled to the Netherlands earlier this year to see first-hand how dementia patients were being cared for and returned home feeling excited about the opportunities for change here in New Zealand.

“In the places that were really good, they had waiting lists for both residential care and for staffing. So when you get it right, you get it really right. For me, it’s about culture in an organisation. Where’s your culture in your residential care facilities? Where’s your leadership? That’s so important.”

The Eden Alternative

One example of an aged care residential home taking the lead in this space is Elizabeth Knox in Epsom, Auckland. They do not have a specific dementia unit and instead cluster their residents into ‘households’ of between 12-15 residents.

Elizabeth Knox CEO Jill Woodward says between 50 and 60 per cent of the 200+ residents suffer from forgetfulness to varying degrees.

“I think the greatest challenge for people providing care, and for people who come into care, is all about meaning. Every human being has a need to be well-known and for their life to have meaning. That’s a greater challenge when you have problems with your memory. So for us, it’s about making certain that we understand the resident’s story.”

Elizabeth Knox’s care partners (or health care assistants) are closet to the residents and help to establish what their needs are and what gives their life meaning before communicating that information to the wider care team.

Staff follow the ‘Eden Alternative’ philosophy which is an approach to aged care that emphasises de-institutionalisation and culture change in our aged care sector. It covers four ‘domains of wellbeing’:

  • Identity – being an individual, knowing your story
  • Growth – the opportunity to evolve, develop and learn
  • Autonomy – the freedom to make your own choices and have self-determination
  • Security – to be free from anxiety or fear

“When these four domains aren’t provided, there is an unmet need. We have to be smarter at identifying what those unmet needs are for our residents,” she says.

A resident with dementia who walks off is ‘searching’ due to an unmet need rather than ‘wandering’, Jill explains.  “They’re searching with purpose. It’s not aimless. Why does a person disappear at the same time every day? Because they’ve got a routine and they did something every day of their life at this time. We must find out what their story is and what has meaning for that resident.”

Jill believes the aged care sector should focus on de-institutionalisation in order to best serve those with dementia. “We can be a safe home but let’s not get ourselves bound up in rules like ‘you can’t go there; you can’t do this’. We should always ask ourselves ‘would we do this in our own homes?’ If the answer is no, then why should we do it in someone else’s home? These places are residents’ homes, they’ve chosen to come and live here. They haven’t chosen to come and live in our workplace.”

Staff must be given the freedom to care for residents in a way that’s instinctive for them, and intergenerational interaction is also important to create an engaging environment.

Jill says there’s often an assumption that people with dementia can’t engage in an intelligent manner or in activities they were previously passionate about. Elizabeth Knox residents with advanced dementia are still involved in all aspects of running their households – from hiring staff to choosing the seasonal menus.

“They are intelligent, educated people. There are all sorts of strategies people engage in such as remembering to follow sequences of certain things in their daily routine. But their humility, depth of perception and ability to teach us is incredible.”

Creating environments that are easy for people to use is another important aspect to consider, such as installing fully functioning kitchens that residents are welcome to use.

“I’ve had people say it’s dreadful we don’t take the knobs off the stoves in case someone with dementia turns it on and forgets it. Well, I sometimes walk away having left the element going myself. So what? The next person coming past will turn it off. And those things just simply don’t happen. I think if we build environments that are as near to home as possible, residents can absolutely continue a life as close to the life they had before.

“If there’s predictability in the environment but there’s also spontaneity, I think it’s a place people can settle into and enjoy.”