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Spending time with a loved one who has dementia

An elderly woman sitting on a bench in a garden for a story about visiting loved ones who have dementia.
Sitting outside can make us all feel a bit better and is a good alternative if the person's not up for a trip out to lunch or away from the facility.()

Lucy Shannon had never known someone with dementia until her mother was diagnosed with the condition at 57.

"They say you have seven to eight years from diagnosis to death with early onset and that's pretty much what we got," she says.

For the last two years of her life, Lucy's mother Moira was in a care home as her needs were too much for the family to handle at home.

"The last thing you want to do is put a loved one in a home," she says.

A young woman hugging an older woman from behind, both are smiling
Lucy Shannon with her mum, Moira, around the time she was diagnosed with dementia.()

As the disease progressed, conversations became difficult and then impossible, but Lucy found other ways to connect with her mum.

"One thing we tried to do is going back to those memories that gave Mum a good feeling. Music was really important for us," Lucy says.

"We always had CDs with Mum's favourite music from when she was younger."

Lucy would also brush her mother's hair or paint her nails as a way to connect.

"Giving them a shoulder massage or foot massage, brushing their hair, giving them a warm foot bath … You can still connect and show your love in other ways [than talking]," she says.

Colm Cunningham is director of the Dementia Centre Sydney, leading research into the care of those with the condition, and he says simple things like holding the person's hand and just sitting with them can bring a lot of comfort to someone in later stages of dementia.

He also says it's very common for people to be scared or nervous about visiting a loved one in a care facility.

"People get worried about doing the right thing and they build themselves up at the idea of a visit and it can become bigger than Ben-Hur for them," Professor Cunningham says.

We spoke with experts in dementia, a volunteer who spends time in residential care homes as a visitor, as well as those who have experience with family members in residential care, and have pulled together their strategies for making a visit with an elderly loved one better for everyone involved.

These might help you feel more confident when visiting someone with dementia or who is physically incapacitated and might need help with having a conversation.

Ask the care home for their rules and what's available

First up, always check visiting hours and what's allowed in the nursing or care home. You can call the home first and ask questions before you get there to help you prepare for the visit.

"I was completely petrified of going. I still am, I hate to say," Lauren Naden says.

Lauren's step-father has been in a care home for about a year. For Lauren, the first visit was particularly unnerving as she didn't know what to expect.

"Nothing can really prepare you to go and see a loved one in a place where they're not coming out," Lauren says.

It took a while for Lauren's mother to be ready to visit her husband in the home.

To make it easier, Lauren rang the home ahead of time and they arranged a room away from the general population for them to meet and had a nursing staff member in the room to help if anyone became too distressed.

Most nursing and care homes don’t mind you bringing in things like photo albums, mementos or even some familiar household furniture to make your loved one feel more at home.

Take tech, books and games with you for a better visit

Two photo albums with old photos in them open with a young woman's hand pointing at a photo
Going through photo albums can be a good activity for older people to do with their grandchildren as it can bring back a lot of memories and stories the grandkids might enjoy to hear.()

Take in things you can talk about with the person, such as a magazine on a subject they love. Or if talking isn't easy, try looking at a picture book together.

Playing a game together, cards or a board game, for example, can be a way of interacting when talking isn't easy.

Dementia Australia has a game app for tablets that has been designed to help people interact with their loved one with dementia.

Maree McCabe, CEO of Dementia Australia, says the app has simple activities, such as fishing games or tic-tac-toe, which allows you to sit with someone and engage with them over an activity.

"We developed this because carers and loved ones would say, 'I really want to go see Mum or Dad, but I don't know what to do when I'm there'," Ms McCabe says.

"They're very simple. Children can play with them with their grandparents."

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Bring the kids with you. It's a family journey

Lucy was pregnant with her first child when her mother was diagnosed and by the time her mother was in a home, her daughter was about five. Lucy always took her daughter with her to see her grandmother, even though the five-year-old would get a bit bored at times.

"I think it was an experience that was worthwhile rather than not, because they [kids] pick up on what you're feeling," she says.

"I think she could be quite scared; a lot of the nursing home residents make funny noises that can be quite scary for a child.

"[But] I think it also developed a bit of empathy."

Ms McCabe says it's worth taking activities for kids to do when they visit — for instance, colouring in or a book to read — which they might be able to do with their grandparent or alone.

"People love having young children around often … it's not even that they have to engage, necessarily, it's the joy of just watching them," she says.

A toddler entertains residents in an aged care home
Taking the grandkids in when you visit can brighten the mood of everyone in the care home. Just remember to bring them something to do so they don't get too bored when you're there.()

Visit with the family pet — if allowed

Malcolm Cowan is a volunteer with a Launceston community service. He visits people in residential care who don't have family or friends that visit often.

He was able to work with a Launceston facility he visits to get a canary to live on the premises.

"Introducing a pet has been a huge hit. It brings some normalcy to the place," he says.

Malcolm says if the home doesn't allow pets, bringing in things like plants can also be good as it gives the resident something to care for.

It might not be appropriate or practical for a pet to live on the premises, but many homes allow visits from family pets and patting a dog or cat can be very therapeutic.

There are also some community services that take trained assistance animals into care facilities for regular visits with residents, so if you don't have a pet yourself to take in, you might be able to arrange visits with assistance animals.

Think about contrasting colours with food

Most homes will allow you to bring in food and drink for your loved one — just ask what their rules are or what options best suit your situation.

Professor Cunningham says it can be important to think of the colour contrast of the food with the crockery available, because if you try to serve a white cake on a white plate, someone with dementia might have trouble with that.

"You can't understand why they're not eating it after you've made all that effort. They might not see it," he says.

Get out in fresh air

A young woman with dark hair is smiling with her arms around an elderly man and an elderly woman
Speaking with the staff before you visit can help you prepare and calm nerves.()

Being outside can make anyone feel better.

Even if your loved one isn't up for going on a day trip or out to lunch, most homes have places where you can sit outside together.

If you are planning an outing, think ahead about where you're going, says Professor Cunningham.

Some things to keep in mind:

  • Patterned carpets might be difficult for someone with dementia or an elderly person with vision issues;
  • Noisy places are often not great for older people who have trouble hearing, and loud noises can cause pain for some people with dementia;
  • Know where your nearest toilet is and ensure it is easily identified and accessible;
  • Take a bag with things you might need, such as a change of clothing if the person spills food on themselves or has an accident.

Remember their reality is real, too. Don't correct, try to direct

Lucy says one thing she learnt with her mother's journey with dementia was to try to never argue with her mum.

"Don't disagree with someone with dementia … there's absolutely no point," she says.

"Just try and hook in with where they're at and just try and make the conversation or the moment something's that not stressful for them."

Professor Cunningham says correcting someone with dementia or repeatedly asking them the same question when they're having trouble with memory can make them embarrassed and distressed.

He says a common problem is when someone close to the person with dementia dies and they then forget that person is gone.

Reminding them their husband or wife has died over and over again can be very distressing for everyone, so instead you can try to direct the conversation.

"Rather than talking about the fact of their death, talk about their life," Professor Cunningham says.

So if Mary's asking where her dead husband John is, you could look at photos of John as a younger man and talk about things he did, like, "Didn't John work on the railway when you first met?"

Professor Cunningham says another common issue can be that the person with dementia doesn't recognise themselves when they see their reflection and they might tell you they've seen their father in the bathroom or something, so you might be best covering or removing mirrors to avoid distress.

What not to say

While it's good to reminisce and talk about their past, don't try to force someone to remember something or ask them too many questions all at once.

"Give people time to answer because they can't process things as quickly and it might take them a while to respond," Ms McCabe says.

Rather than saying "Don't you remember?" or "Remember when…?" ask open questions such as, "What did you do on your bus trip this week?" or "What was your first job out of school?" and go with whatever they say.

Ms McCabe says it's best to introduce yourself to your loved one each time you see them with a simple, "Hi Mum, it's Jane, your daughter", rather than "Don't you remember me?". But try not to get angry or upset if they forget you or mistake you for someone else.

"The best thing to do is to be with them wherever they're at," she says.

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Connecting when talking isn't possible

There does come a time with many dementia patients or elderly people when they're not able to talk much anymore.

Professor Cunningham says music can be really useful when talking isn't easy.

"A person may not be able to articulate a sentence, but that doesn't mean they can't sing along to a song," he says.

Professor Cunningham says it can be hard to see what effect your visit has someone, particularly if they can't verbally tell you how they're feeling.

But he says every minute you are able to be there can have a positive effect.

"If you're only there for five minutes … the positive hangover of what you've done might stick with them for a lot longer," he says.

"There's a lot of guilt that goes along with entrusting the care to outsiders of someone you love.

"Don't underestimate the value of a minute with somebody."

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