" People living with dementia are some of the most vulnerable people in our community right now. "
Isolating does not have to mean isolated

Dementia Australia has called on the community, including health and aged care staff, to work together to maintain engagement with people impacted by dementia during this unprecedented time of enforced isolation.

Maree McCabe, CEO Dementia Australia said people living with dementia are some of the most vulnerable people in our community right now.

“We are all physically isolating, but it does not mean we have to feel socially isolated,” Ms McCabe said.

“Ramping up the focus on engagement and communication at this time of restricted physical contact is vital for all of us, but especially for people living with dementia.

“If stimulus is reduced for people living with dementia the loss of cognitive function can escalate.

“Over time these are losses that most people will not be able to regain.

“Being aware that your cognitive abilities may ‘slip away’, as one client described it, is a profound concern.

“With innovative strategies and working together it doesn’t have to be that way.

“For people living in residential aged care we encourage staff to involve families wherever they can to actively plan for different forms of engagement and methods of communication.”

Some of the fantastic examples we have heard about through aged care providers and our clients are:

• Maintaining regular visits from a family member at key times of importance for a person with dementia so that routines are maintained as much as possible or to assist with the care of their loved one;
• Staff scheduling window visits with phone calls, walks in gardens and courtyards within the homes so loved ones have been able to visit safely with no contact with other residents;
• Sharing of photos of residents enjoying activities with families;
• Arranging video calls, or if that isn’t practical, sharing video messages between residents and families;
• Printing out emails or photos to give to residents to enjoy;
• Providers inviting schools and community groups to send jokes, stories and messages to share;
• Where residents have needed to be confined to rooms, providing writing materials for residents to write notes to each other;
• Staff creating WhatsApp chats for residents to help maintain social interaction when perhaps they are not able to see each other as much;
• Providers creating closed Facebook Groups for families to communicate with each other and the staff;
• Day respite staff dropping activity packs off to homes instead of clients going to them.

“There are still many ways that families continue to be included, even if they are not visiting in person as often,” Ms McCabe said.

“For people living with dementia not every idea will work every time – but this ongoing connection is important for everyone.”

Social media campaign

To encourage everyone to remain socially connected during this time, Dementia Australia launched social media campaign, #IsolatingNotIsolated.

The campaign is sharing information, tips and personal stories on how we can all remain socially connected during isolation.

“With 70 per cent of the 459,000 Australians with dementia living in the community it is time to consider how you might check on someone who may be more physically isolated or vulnerable so that they do not feel socially disconnected or alone,” said Ms McCabe.

“Calling a person who lives alone or knocking on a neighbour’s door and from a safe distance, checking if they need any help with getting to medical appointments, or if there is anyone you can contact on their behalf are actions that can make a significant difference.

“Dementia is a progressive disease, which means that people with dementia may be as yet undiagnosed and may need your help at this difficult time.

“I also encourage you to share what you are doing to remain socially connected with others using #IsolatingNotIsolated. It is a great way to inspire others to take action and we would love to hear your ideas.”

Help Sheets

We have also developed Help Sheets outlining tips to navigate COVID-19 for people living with dementia, carers, families and friends of people living with dementia, residential care providers and home care providers. These have been shared on our website, on our social media channels and through the media and have been downloaded more than 5,000 times.

We developed these Help Sheets to provide clarity on what people can do to achieve the best possible outcomes for people living with dementia during this difficult time.

The Help Sheets include:

  • Tips for people living with dementia – outlines the coronavirus COVID-19 symptoms, hygiene tips, the importance of having a good support network, ideas to remain active and engaged while in self-isolation, and where to go for help.
  • Tips for carers, families and friends of people living with dementia – outlines the coronavirus COVID-19 symptoms, hygiene tips, helpful tips for primary carers, as well as for family, friends or neighbours, ideas for remaining active and engaged while in self-isolation, and where to go for help.
  • Tips for residential care providers – outlines the impacts coronavirus COVID-19 may have on residents, tips on alternative activities and how to support continued engagement with families and carers.
  • Tips for home care providers – outlines the impacts coronavirus COVID-19 may have on a person living with dementia, tips to reduce heightened anxiety and where to go for help.

Keeping busy in isolation

We asked Dementia Advocates and consumers how they were keeping busy and staying connected while in isolation. These are just a few of the great stories we received.

Trevor

Namaste! Trevor and his wife Jill would normally practise yoga in a class, but in these unusual times they have adapted their routines.

Trevor lives with dementia and has found keeping active is as important as ever.

“My wife Jill and I are going to continue our yoga practice at home. We have both been going for umpteen years, so we go through some of the routines we both know to keep things flowing,” Trevor said.

“I also go for a good walk in the quieter residential streets of my neighbourhood. This is really helping as my gym is currently closed, and my golf course only recently re-opened (with strict new measures in place!)

“I am taking this time to listen to my body. I actually had an afternoon kip on the weekend. It was great to be able to take the time to put my feet up and relax when I needed to.”

Myra

While most people are spending more time at home, Myra is getting out and about and making new connections.

Myra lives with dementia and, initially, was unable to access social support for her regular walks due to restrictions.

Meanwhile, aged care worker Sharon, who had some spare time, contacted Dementia Australia asking if she could help.

Hanna, a Dementia Australia Younger Onset Dementia Support Worker, introduced the two women and now Myra and Sharon are hitting the pavement, going on long walks twice a week.

“These two are now best of friends and it looks to be a working relationship that will be kept long after this pandemic is over,” Hanna said.

Bobby

Dementia Advocate Bobby celebrated her birthday recently and, despite self-isolating, enjoyed a day full of celebrations and connections.

First thing in the morning, Bobby was greeted by her Google Home with ‘Good morning’ and ‘happy birthday’ messages. She then headed to the kitchen to make some pancakes.

This was followed by an early morning Zoom call with friends at Dementia Alliance International, where she heard an international chorus of people who, like herself, live with dementia, singing her Happy Birthday.

In the afternoon, Bobby celebrated with a virtual birthday party with her daughter and grandkids.

Finally, the local club had been running a seafood platter for Easter, so she called to see if it was still available. Unfortunately, it was no longer on the menu. However, when the chef heard it was for her birthday, he let Bobby know they would certainly make it and deliver to her for a 6pm dinner.

Bobby said her day was full of well wishes, social connections and birthday celebrations.

For more information and suggestions on how to better support all people impacted by dementia in relation to coronavirus (COVID-19) visit https://www.dementia.org.au/an-update-from-dementia-australia or call the National Dementia Helpline on 1800 100 500.

 Posted: May 19th, 2020
Discussion

V. F. said:

All the above is fine if the person with dementia can respond instantly to an approach from staff. As my husband can no longer respond there is no gratification for the staff so they don't want to bother communicating. What my husband needs is my gentle physical communication by touching and the smell of my perfume. With his nursing home in lock down I am barred from touching him.

Bob Leicester said:

Most of the work by Dementia Australia, is irrelevant to people requiring acute care such as my wife Allison. Allison was diagnosed with Alzheimer's about 15 years ago, and during the past 2-3 years has required acute care. She does not know who I am, cannot move her body, cannot talk and she is blind. When she is happy she smiles and may jiggle her toes in response to music. Of the 10 suggestions by Maree MaCabe for mitigating the effects of isolation, only the first one is possible for Allison. This suggestion refers to the maintaining of regular family visits. Pre COV-19 days I was visiting Allison 2-3 hours every day. During the lock-down this was reduced to only half an hour each week for all nursing home residents, regardless of their normal visitation practices. It would be very useful if Dementia Australia could advocate for acute care residents in nursing homes to be given visitation rights during lock-down in proportion to their normal visitation frequencies.

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Call the National Dementia Helpline: 1800 100 500