Talking Dementia BlogDiscussing the support and skills you need in caring for someone living with dementia
Self-care can be a loaded term for caregivers/ care partners of someone living with dementia. Care partners can react with exasperation at the mention of the term. Statements like these are common:
“I don’t have time and it’s too much work”
“I’m fine…I’ll focus on myself later”
“It doesn’t help me, it only makes me feel guilty”
The lives of dementia caregivers/ care partners are often externally focused on those they are caring for and conversations about self-care can create feelings of stress, frustration or anxiety because many messages about what self-care is can be confusing or vague.
In this article, we’ll explore two common myths about self-care. We’ll break down what they are, explore the obstacles they involve and offer some alternative ways of understanding and engaging in self-care activities. Self-care is a very important tool that can assist in preventing or improving symptoms of caregiver stress or burnout.
Self-Care Myth: I don’t have time.
Self-care is time consuming and needs to be planned in advance.
Myth Breaker: What is Self-Care for Caregivers?
Self-care can be anything, as long as it gives you a sense of accomplishment or pleasure.
Sense of Accomplishment: Activities that offer a sense of accomplishment are often practical in nature; for example paying the bills, tidying an area of your home, mowing the lawn.
Sense of Pleasure: Activities that offer a sense of pleasure are not practical. These activities help us to enjoy ourselves, feel calm or energized; for example, a bike ride, gardening, visiting a place of worship, meditation, going out to the movies, a nap. If you are not interested in an activity, then it is not self-care.
Obstacles to Self-Care
In our work we often hear from care partners that it’s easier to emphasize the practical activities and more difficult to make time for activities that offer pleasure and calm.
Many care partners report feelings of guilt, remorse or regret when they try to plan a self-care activity. They may also feel pressured to “get the most” out of their self-care activity, because they know the experience was planned as a way to relax.
Learnings: What Can I Do?
It’s important to understand that doing self care activities may not feel good right away. As you make your self care a priority it’s normal to feel frustrated and for thoughts like “it’s useless, I don’t have time, it’s not working” to come up. This is a normal process of change. These thoughts and feelings will decrease with practice. Small consistent changes will add up over time.
- Look ahead in your calendar, and find a time that works for you. The amount of time is up to you, 5 minutes, 15 minutes or 1 hour.
- Then list the activity you plan to do:
- Are you planning a practical activity, like getting the bills paid, folding the laundry, a doctor’s appointment for yourself?
- Is it a pleasure activity, like a short walk, gardening, reading, coffee with a friend?
- Be mindful if you are scheduling more practical than pleasure self-care activities.
Self-Care Myth: I feel fine
I don’t need self-care, I feel fine.
Myth Breaker: What is Self-Care for Caregivers?
Everyone can benefit from reducing stress. Research shows that people in a caregiver role are at higher risk for physical and mental health illnesses. For example, caregivers can have more difficulty with sleep, heart health issues, and an increased risk for diabetes, depression and anxiety. You may feel exhausted, depressed, anxious and irritable on a daily basis. The physical and emotional challenges occur over the period of caregiving.
Obstacles to Self-Care
Focusing on the person you are caring for, their emotional, physical and practical needs, becomes second nature for care partners. Some care partners describe feelings of guilt, frustration and resentment when they are told “take care of yourself”. Trying to balance all of the tasks and responsibilities, while also doing things for yourself can seem impossible.
Learnings: What Can I Do?
Caring for someone with dementia is complex and challenging. Improving and maintaining your own well-being will help improve your mental, emotional and physical health. Taking time for self-care can help you do the caregiving tasks in a more efficient and productive manner. When caregivers include their own self-care as a priority, both the caregiver and the family member with dementia benefit.
Quiz: Are You at Risk for Developing Caregiver Stress?
People who experience caregiver stress report feelings of physical and emotional exhaustion, new or worsening health problems, difficulty concentrating and increased feelings of anxiety, depression and irritability. Take our quiz to see if you are at risk for developing caregiver stress.
Andrea Cain, M.A., R.P.
Mental Health Clinician and Instructor
Gita Lakhanapal, OT Reg(Ont), R.P. , MES
Educator – Mental Health Clinician
Cyril, Dorothy, Joel and Jill Reitman Centre
for Alzheimer’s Support and Training & Outpatient Geriatric Psychiatry
The Globe & Mail highlights our Enhancing Care dementia support programs as care models for the looming aging and caregiver crisis.
The front page of this Saturday’s Globe and Mail featured a powerful story by @ZosiaBielski on the elder care crisis that’s leaving “families stressed, exhausted and looking for help…” The article, With a looming aging crisis, who is helping the caregivers?, defined the crisis in these terms:
“…elder care leaves families stressed, exhausted and looking for help, a challenge particularly felt by women. A patchwork of hospital programs, government supports and online communities….offer a blueprint for the way forward, bringing family caregivers to the foreground in medicine, while keeping them healthy themselves.”
The Globe highlighted the Enhancing Care for Dementia Care Partners program as one of those models offering “a blue print for the way forward”, saying:
“…For caregivers helping relatives and friends who live with dementia, the Sinai Health System’s Reitman Centre in Toronto and Alzheimer Societies across Ontario now provide in-person and online programs that offer psychological support and skills training on managing dementia-related behaviours. Funded by the province, the programs teach caregivers how to overcome difficult scenarios at home and meaningfully communicate with their loved ones as the disease takes its toll.
Ms. Beed believes these kinds of educational help hubs are increasingly necessary.
“Our generation is looking at caring for really complex illnesses in our parents, siblings, children or partners,” she said. “The complexity of the demand has shifted over the generations. It’s not like we have a lot of role models…”
Below are a sampling of some of the professional voices, caregiver advocates and discussion generated on social media around the article:
André Picard |
Health columnist at The Globe and Mail
Kelly Grant |
Health news reporter for The Globe and Mail
Zosia Bielski |
Journalist for The Globe and Mail
“Our generation is looking at caring for complex illnesses in our parents. …The complexity of the demand has shifted over the generations. It’s not like we have a lot of role models,” says Janet Beed. I spoke to caregivers, and those starting to care for them @globeandmail https://t.co/TdY4ZiC6G4— Zosia Bielski (@ZosiaBielski) April 13, 2019
Dr. Nathan Stall |
Geriatrics/Internal Medicine @MountSinai
Two must-read articles in the @globeandmail on #caregiving:— Nathan Stall 🇨🇦 (@NathanStall) April 15, 2019
Outstanding and important journalism by @ZosiaBielski.@TheChangeFdn @CaregiversNS @DrSamirSinha @RyersonNIA @CanGeriSoc @CaregiverON @MountSinai @WCRInstitute
Elder care leaves families stressed and looking for help, a challenge particularly felt by women. A patchwork of hospital programs, govt supports and online communities shows a way forward. @ihpmeuoft‘s @NathanStall shares his thoughts https://t.co/kvo84Rfjjx @globeandmail pic.twitter.com/pV2B6fFEI1— U of T Public Health (@UofT_dlsph) April 17, 2019
The Change Foundation
ICYMI: Featured in the @globeandmail over the weekend, were the #ChangingCARE teams and the initiatives they are leading to support #caregivers in Ontario: https://t.co/80nsqaCVm0 https://t.co/OeYKRybsMq— The Change Foundation (@TheChangeFdn) April 16, 2019
Nearly half the population has cared for an aging, ill or disabled family member or friend, according to Statistics Canada. @GlobeandMail looks at how programs like those at Sinai Health + organizations like @TheChangeFDN are helping. #ChangingCARE https://t.co/ebBeeuxTg6— SinaiHealthSystemTO (@SinaiHealthTO) April 15, 2019
Elder care can leave families stressed and looking for help. This article from the @globeandmail shares how hospital programs, including those offered by Sinai Health and organizations like @TheChangeFDN can help #ChangingCARE https://t.co/tJ8L0uNBPa— Mount Sinai Hospital (@MountSinai) April 17, 2019
With National #Caregiver Day upon us we’re starting a short series of wellbeing and safety tips for senior caregivers who are caring for someone living with dementia.
One in five Canadians are caring for someone with dementia. More than 1 million caregivers are older than 65. Seniors are caring for seniors and caregiver wellbeing is critical to the health and safety of those they are caring for.
When caring for someone living with dementia the use of gentle touch can be comforting and reassuring to the care recipient and for the caregiver too. Holding a hand or a friendly hug can maintain a much needed connection for both.