Caregivers may neglect their own health because they don’t have the time or energy to care for themselves.
This article of anna maroon, western university; Maureen Markle Reid, McMaster UniversityY Patricia H Strachan, McMaster University It originally appeared on The Conversation and is republished here with permission.
Stroke is one of the leading causes of disability in Canada. More than 50,000 Canadians suffer a stroke each year and about 40 percent of them will live with the lasting effects of stroke on their health. Once a person living with stroke returns home, 80 to 90 percent of care at home is provided by family and friends, known as informal caregivers.
Caregiving can be a wonderful and rewarding experience. However, when care continues for months and years, it can become difficult and caregivers’ own health can begin to suffer.
To better support caregivers, we sought to understand the considerations they made in choosing to access and use support services. Our research involved conducting interviews with stroke caregivers and health care providers. This allowed us to better understand their experience as caregivers and helped us identify what helped or hindered their ability to find and use appropriate supports.
Stroke and the brain
A stroke occurs when blood flow to the brain is interrupted by a blocked blood vessel or when a blood vessel in the brain bursts. As a result, part of the brain is damaged.
In the most severe cases, a stroke causes death. In other situations, the impacts on a person’s health will vary. Some people have mild effects from a stroke, such as weakness or numbness in a particular area of their body that will quickly return to normal.
However, in moderate to severe strokes, the effects of a stroke can last and even be permanent. These effects can include depression and anxiety, mobility problems such as paralysis, communication and swallowing difficulties, changes in personality and cognitive abilities, and prolonged fatigue.
Life after a stroke
After hospital treatment, people living with the effects of a stroke will need rehabilitation services, which are offered at both inpatient and outpatient facilities. In the case of outpatient rehabilitation, the person living with a stroke usually lives at home and attends a program two to five days a week for a period of at least eight weeks. Carers also often attend, to support the person living with stroke and to learn about managing stroke.
Depending on the needs of the person living with stroke, caregivers can help with dressing and washing, and provide support with mobility, communication, and many other tasks. Becoming a caregiver is a big adjustment and it can be overwhelming. Over time, caregivers may become more comfortable with caregiving and find it rewarding, but caregiving can also affect their health.
Our study confirmed that some caregivers experience depression, especially if they are unable to participate in activities such as socializing with friends or exercising. In some cases, their social networks change because people are uncomfortable or unfamiliar with the effects of stroke, and friendships are lost. Caregivers can also neglect their own health because they don’t have the time or energy to care for themselves.
Programs and barriers
Services are available to help caregivers and the person living with a stroke. Support programs include home care, caregiver support meetings, community day programs, and overnight respite. These services provide rehabilitation, exercise, and social engagement for the person living with stroke, and allow the caregiver to take a break from their caregiving role or seek support from other caregivers.
Using these services can also allow the caregiver to take care of other responsibilities, such as shopping or managing their own health by keeping appointments, socializing, or participating in physical activities. However, many caregivers do not know what services exist or are unable to use them.
Some community programs cost money, and the person living with a stroke may need specialized transportation, which also costs money. Sometimes caregivers must leave their job or the person living with a stroke is no longer able to work, resulting in a loss of income. Over time, the costs can become prohibitive.
Our study found that caregivers may not be able to leave the person having a stroke alone to attend a support group. The caregiver may be reluctant to accept support because they do not trust that the person suffering from a stroke receives adequate care when they are not there.
It can be difficult for caregivers to find out about services. This means that many caregivers do not use these services and continue to manage their caregiving responsibilities on their own, even though they might benefit from the services.
Better policies and programs are required to support these caregivers and help them maintain their health and well-being. Our research suggests that potential improvements to existing policies and programs could include:
Increased availability of accessible community health and social services, such as health and wellness activities for caregivers that are offered at the same time and place as programs for people living with stroke, and hybrid support meetings for caregivers that offer alternatives in online to in-person meetings.
Support to navigate the health system to identify and access services.
Greater access to financial help for caregivers, such as enhanced subsidies or income tax reductions.
Health care policy changes to emphasize continuing family-centered care within community settings. This will help build trust between caregivers and health providers, facilitate early detection of caregiver concerns, and provide more opportunities for caregivers to access services.
Better funding and availability of community-based health professionals such as social workers, nurses, occupational therapists, physical therapists, speech-language pathologists, and recreational therapists.
Stroke caregivers provide critical care and support to enable people living with stroke to live at home in the community. More needs to be done to formally recognize and support caregivers to engage in this important task without sacrificing their own health and well-being.
anna maroonAssistant Professor, Arthur Labatt Family School of Nursing, School of Health Sciences, western university; Maureen Markle ReidProfessor and Canada Research Chair in Person-Centered Interventions for Older Adults with Multimorbidity and their Carers, School of Nursing, McMaster UniversityY Patricia H StrachanAssociate professor, McMaster University