Who is a family carer?

A carer is a family member or friend who provides unpaid primary physical support (dressing, toileting, bathing, eating, etc.) and often emotional support for another person. You will find that sometimes we refer to the role as a family caregiver, a care partner or a carer. All these terms mean the same thing, but they have different nuances.  When we use the term ‘caregiver’, it implies that the relationship is one-sided, and that one person ‘gives’ to another, and this is not necessarily the case. The terms carer and care partner try to address this.

Family carers provide support to approximately 75 per cent of adults with cognitive impairment, (Health Council of Canada, 2012). Carers are unique because their roles are often split between other responsibilities such as paid labour, childcare, and their own health concerns and needs.

The importance of family carers

In Canada, 1 in 4 people identify as family carers, (Statistics Canada, 2013) and collectively contribute $25 Billion in unpaid labour to our healthcare system, (Hollander et al, 2009) by caring for 70-80% of community-dwelling older adults, (Health Council of Canada, 2012). Carers can change lives as they can reduce the likelihood of a person with dementia being prematurely institutionalized in a hospital or nursing home setting. Carers assist older adults to age in place, and fulfill wishes of the older adult to live in their own home for as long as they can. Family carers maintain people’s dignity, values and beliefs through the work they do and the meaningful care they provide. This important work is often difficult and at times feels unrecognized.

Risks associated with being a carer:

• Emotional strain from changes in the relationship and lack of reciprocity. There is a significant change in the relationship when one person becomes a carer. This can result in feeling unappreciated, resentful and guilt-ridden.
• Social isolation (a high risk factor for the development of mental and physical health problems). Carers share a unique experience that is time demanding, and it can be very isolating if their peers do not relate in these experiences
• Psychological stress: carers often report feelings of stress, depression, and anxiety associated with being a carer that are significantly higher than their non-carer peers.
• Overall health: carers have a 23 per cent higher level of stress hormones and a 15 per cent lower level of antibody responses than non-carers.

These risks contribute to a phenomenon called ‘Caregiver Burden’ that is often used to describe the physical, psychological, social and financial problems that can be experienced by carers of people with dementia.

How to get started as a family carer?

When you first enter the role of a carer it can be very challenging to navigate or even know where to start. It can be overwhelming, scary, anxious, and rewarding all at the same time. Experienced carers have shared one tip that has guided them through their caregiving journey: figure out what gives you strength. Then, try to make time for the things that make you feel strong. Many caregivers feel stronger when they:

• Understand the carer role and feel knowledgeable
• Set boundaries and adjust expectations
• Link with social supports such as family, friends, neighbours etc.
• Connect with healthcare professionals, for both their care recipient and themselves
• Develop a self-care routine and stick with it