By Nira Rittenberg

As Canada’s population ages, the number of caregivers who are involved in dementia care is on the rise.  The latest statistics from the Alzheimer Society show that there are 25,000 new cases of dementia every year and by 2031, the number of cases will increase 66% from today.

Individuals with dementia often require quite a lot of care, and it's usually the family that provides it. CBC documentary, The Caregivers' Club profiles three Ontario families as they struggle to care for their loved ones.

Caregivers for People with Dementia Burnout More Often

Caregiving is challenging, and people with dementia often require long care hours. This type of caregiving is associated with higher levels of burnout than non-dementia caregiving.  Research has shown that it is much more difficult to do than caring for someone with a physical disability.

For almost all carers there is the balancing act of family life, careers and other relationships. Some caregiver demographics, such as homosexual, Indigenous and caregivers of individuals with early onset dementia, may experience additional stressors in their roles. Each of these caregiver groups has challenges that are specific to their situation.

Early onset dementia caregivers are often in the phase of life where they are raising younger children and carry more of a financial burden. They may have not fully developed their caregiving skills and feel more unprepared for the task. Homosexual caregivers often have to deal with prejudice and lack of sensitivity in the healthcare system; while Indigenous populations may not have access to mental health services.

Stress Warning Signs

The stresses of caregiving can be insidious and often trace back to the caregiver neglecting their own mental and physical health. These triggers may happen slowly and make burnout hard to identify.
 
Some warning signs include:

•         You are not enjoying social activities and friends
•         You find it a chore to leave the house
•         You are more irritable and have mood changes
•         It is difficult to concentrate and get things done
•         You are having trouble sleeping
•         Your weight may be affected (up or down)
•         You feel anxious or depressed
•         You have physical complaints such as headaches, pains
•         You get sick more often, with both minor and major ailments

Caregiving Will Not Change the Course of the Dementia

Some caregivers feel the self-imposed responsibility that their efforts can somehow change the course of the illness by keeping the individual with dementia “happy and healthy.”  Many caregivers report that they end up feeling upset with the person they are caring for. Though they are aware that feeling this way is not rational, it makes them feel worse.

Many caregivers saddle themselves with unrealistic expectations of what they can handle on a daily or practical level. Money, resources and ability to manage may not be adequate and can make a caregiver feel impotent.  The lack of ability to control this situation combined with a complex health care system can be difficult and frustrating.

Fortunately, not all symptoms occur for every caregiver, and there is no timeline on when they will feel that things are not working. 

How to Access Support for Caregivers

The good news is research has shown that support can make things easier for caregivers. 

SCENE FROM THE FILM: "We're not just walking for my mom, we're walking for my dad."

Interventions can come in different forms like receiving help to get things done and assistance with housework, bathing or other tasks.
 
The caregiver also needs support to deal with the stress of watching someone they care about deteriorate to help them cope with the emotional struggles that are part of the journey.

These supports can come from both professionals as well as peer caregivers. Every situation is different and supports should be built around need. There are a variety of services and resources that can help. The key is to find one that suits your family.

Reach out to your doctor or your local health agency. Find someone who will help your family to find what it needs to get the care, education and support to be both effective and healthy.

Resources include:
Your local Alzheimer’s society through Alzheimer’s Canada
Your local Health Integration Network
Dementia: A Caregiver’s Guide Information and Strategies for Family and Friends, Baycrest, Third Edition 
Canadian Government website for Dementia

Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Center and in private practice. She is the co-author of Dementia: A Caregiver’s Guide.