Help and support for navigating the dementia journey
For people in Nova Scotia living with Alzheimer’s disease or other dementias – and for the people who surround them - the Alzheimer Society of Nova Scotia (ASNS) wants you to know they provide help and support by phone, mail, email and/or virtually.
“Alzheimer’s is a disease there is no cure for,” explained Linda Bird, director of programs and services at ASNS, “but, there are a lot of people here [at ASNS] to help support families and people living the disease. We care. We want people to call, get connected and get the education and support they need, so they can make it a better journey.”
To that end, Bird brainstormed a few holiday tips to help reduce the stress that sometimes comes with holiday cheer.
HOLIDAY TIPS FOR THE JOURNEY:
1. Be candid with your people - including caregivers, family, housemates, partners in care and/or friends – about what would make you happy, what you want to do.
2. If you want to be involved in planning activities, ask to be. With good intentions, your people may assume responsibilities on your behalf.
3. When visiting - whether in person or online - let your people know that you may leave to take a break and assure them, suggests Bird, there is no need to worry.
HOLIDAY TIPS
FOR CAREGIVERS, HOUSEMATES:
1. Whether you are two people or five, choose a few favourite traditions and modify them to assure there is space for everyone. For example, maybe wrapping gifts is a challenge but bagging them isn’t; maybe measuring ingredients is a challenge but stirring isn’t.
2. Stagger online or in-person visits, said Bird, adding to think of time of day.
“Gatherings earlier in the day may be better - maybe a holiday breakfast instead of holiday supper.”
3. Prepare visitors in advance, especially if – since the last visit - there is a significant change in the person living with dementia.
“Prepare people before they come and provide some communication tips,” suggested Bird.
HOLIDAY TIPS FOR VISITORS:
1. Sometimes between visits, people living with dementia will change. Visitors may feel sadness, said Bird, “and that’s OK.”
“It is natural to feel sad … realizing there has been some losses. It is normal and part of life,” said Bird. However,
there is no need to feel uncomfortable or disengage.
2. If you are not remembered, for example, simply introduce yourself, advised Bird. “Say, ‘Hi, I’m Linda, your daughter.” Or, make and wear nametags.
3. Watch for signs of fatigue or anxiety.
“Be aware that a person living with dementia may not be up to the same amount of stimulation that they were able to in the past.”
4. To create the best space for someone living with dementia to participate in, Bird suggests modifying some communication behaviours.
"Speak calmly. Speak directly to the person. Look them in the eye and [meet] them at their [physical] level. Wait for them to answer questions,” Bird suggested.
“At the dinner table, don't have three or four conversations going on at once. If you want to include the person with dementia … [then] one conversation at a time and make sure to include them.”
ONLINE RESOURCES:
Along with the ASNS website, there is a youtube channel - ‘AlzheimerNS.’
Bird and colleague Jenna Farrell, coordinator, communications and marketing at ASNS, recommend a series of short videos from the ‘Reason
to Care’ campaign featuring people living with dementia, caregivers, volunteers and donors speaking about the reason they care about Alzheimer’s and other dementias.
“Most people have someone they know; have that personal connection,” said Farrell, adding the videos are more than education - they spark conversation.
“The really big thing when embarking on a journey with dementia is for everyone to get on the same page,” said Bird. “That is what these resources are for.”
Visit Alzheimer.ca/ns or call 902-422-7961 or 1-800611-6345.