Caregivers may face a range of issues arising from the care recipient’s fluctuating, or reduced cognition. Reasons for changes in cognition may include chronic and/or life limiting illnesses, acquired brain injury, dementia, mental illness and addictions, and/or developmental disability. Compromised cognition can be very challenging for caregivers and may create emotional, financial and even physical conflicts with the care recipient, including legal issues (e.g. consent for treatment) and future planning, especially for older caregivers.
Several studies have found that compromised cognitive status is common among informal caregivers of older adults, particularly if the caregiver themselves are older. If a caregiver themselves has cognitive issues, this may place service providers in particularly challenging situations[i]. Issues of caregiver cognition may be increased through experiences of caregiver stress and distress, such as lack of support networks and/or respite. Competency means that caregivers are able to provide care that meets the basic needs of the care recipient, as well as being able to take care of themselves. Service providers can support caregiver competency through validating their knowledge, experience, providing appropriate resources and information. Alternately, service providers can damage caregiver competency by ignoring or minimizing their experience and knowledge thereby eroding confidence. Caregiver competency requires a sustainable system of support, including provision of services and information.
Other issues specific to caregiving to those with mental health and addictions, as well as developmental disabilities, is explored further in the following sections.
[i] Miller, L. et al. (2006). Caregiver cognitive status and potentially harmful caregiver behaviour. Aging & Mental Health, 10(2): 125-133.
Mental Health & Addictions
Approximately two percent of the population (18 years and over) provides care to a family member, friend, or neighbour diagnosed with a mental illness. This translates into approximately a half a million Canadians. One in five caregivers also care for someone who is ill or disabled in addition to providing care to someone diagnosed with a mental illness. Seven in ten report that they had no other reasonable options when they decided to become the primary caregiver. Approximately half are providing the care because they believe there to be a lack of home care and/or mental health services. Close to half of these caregivers have been providing on-going care for an extended period (5 years or more), and most describe the condition for which care is required as something that is long-term. A sizeable majority of caregivers provide the care in their own home. Almost six in ten caregivers pay out-of-pocket expenses, mainly paying for transportation-related costs and medications, with three in ten are spending over $300 per month (Canadian Community Health Survey, 2003; Health Canada, 2004).
Family members caring for those with serious and persistent mental illness tend to find themselves becoming a nurse/counselor/advocate/crisis worker/home-care and income provider all rolled into one. Although a majority of caregivers say they are coping reasonably well, many are experiencing at least some difficulties in other aspects of their life as a result of their caregiving duties. This is most often the case for balancing their personal and family needs, and least likely in terms of their own physical health. Despite the fact that a majority of caregivers are confident they have the necessary skills, almost all would welcome help performing their caregiving tasks. However, when asked what would be most helpful, there is no clear consensus as to what types of assistance would be most beneficial.
What are the issues when the caregiver has mental health concerns? Caregiving can extract both a physical and an emotional toll. Symptoms of depression and mental health problems are much more common among caregivers than among non-caregivers. Proportions of caregivers reporting depressive disorders or symptoms range among studies from 30-59% (Gray, 2003). According to a 2002 Health Canada Study, caregivers are most likely to feel stressed in terms of their emotional health, with close to eight in ten reporting that caregiving has resulted in significant (29%) or some (48%) emotional difficulties for themselves.
Mental health issues and addiction often go hand-in-hand. Little research has been done on caregiving and addiction. One prominent American clinician-researcher working states that, in particular, caregivers of chronically ill patients are more vulnerable to addition as a way to “self-medicating anxiety, depression and fear” (Huysman, 2010). If a care recipient is addicted to drugs, alcohol, pharmaceutical medication or a range of illicit/illegal behaviours, caregivers may face challenging behaviours. Stigma also is a problem as caregivers of addicts may not receive the same social sympathy as caring for someone with cancer, or those with chronic illness(es). Addictions and/or mental health issues may also become an issue in receiving services if home service providers feel unsafe, thereby negatively affecting caregiver resiliency.
Canadians with developmental disabilities can now reasonably have a life-expectancy that extends beyond mid-life. Parents are still the primary caregivers for adults with developmental disabilities and are themselves aging. Combined with the de-instutionalization of persons with developmental disabilities have given rise to situations where parents in their eighties or nineties are still the primary caregivers of their developmentally disabled adult child in his/her fifties or sixties. One age-related concern is providing support to the family caregivers who themselves are experiencing diminished capacity (FCA, 2012). Caregiving parents find it extremely difficult to locate resources to help them plan for the time when they can no longer care for their son or daughter and consequently, adult children may be left at risk and/or homeless when their parents die (Canadian Council on Aging, 2004). Further, some aging parental caregivers may be reluctant to access services if they have had negative experiences (such as being encouraged to place their children in care) early in the care recipient’s life.