By Sue Lantz
Transition points in care are an opportunity to extend support to caregivers. When a patient is transitioning from a hospital to the community, or between care settings or clinicians (e.g. discharge from hospital to home, or from home to a long-term care or retirement home), this presents the key opportunity both to identify caregivers and to help them to seek support with their own transitions.
When a patient transitions to home or a community setting, informal caregivers usually take on a larger share of the responsibility for supporting or providing care. At this point in the care process, it is vital that patients and caregivers are given clear, concise information and directions, as they take on more tasks and responsibility for maintaining the treatment plan and day-to-day care. A collaborative relationship and clear information help to increase the skills and understanding of the caregiver, support the patient to maintain the treatment or rehabilitation care plan and create a more reassuring situation for everyone.
Care for caregivers
When a person requiring care lives with the person delivering that care, this can create a demanding environment for the caregiver, both physically and emotionally, and sometimes be isolating. Failing to meet the caregiver’s needs can lead to high stress levels, declining health and burn out.
According to Statistics Canada, 60 per cent of caregivers have been in a caregiving role for more than a year, which means most caregivers have long-term responsibilities toward their loved one. For caregivers, maintaining such ongoing responsibility for care in the home can pose risks to their own health. If their health (physical or mental) declines, this often means they can no longer sustain their caregiving role. Therefore, by delivering good, early support to a caregiver, health providers are contributing to a more sustainable arrangement for both the patient and the caregiver.
During transitions in care, the primary focus of health care providers is naturally on the patient and their care needs. Yet, by building everyday health care practices that recognize the involvement of a caregiver and help them to seek their own supports, this can improve the quality of the experience of both the patient and the caregiver. Likewise, caregivers can contribute to the patient successfully receiving the support they need by identifying themselves to health care providers (including doctors, pharmacists, nurses, occupational therapists, physiotherapists, personal support workers and administrative staff) and cultivating respectful relationships.
What matters most: Respectful, compassionate and timely communication
Just like the patient journey, caregiving is not a linear path. Each caregiving situation is unique and fluctuating. But there can be cycles where things are more certain, stable and manageable (or in a “steady state”), and times when things are unpredictable and overwhelming. There can also be a “layering effect” of complexity; for example, when an aging person acquires additional health challenges or has a life-limiting or degenerative health condition. As a patient’s health becomes increasingly compromised, the caregiver role becomes more challenging, complex and demanding.
Respectful, compassionate and timely communication and interactions throughout the health care delivery process (among health care providers, patients and caregivers) is what caregivers say make the most difference to both the patient and their own experiences.
In 2018, Collaborative Aging and the Alzheimer Society of York Region co-led a consultation and design effort that culminated in the production of a policy framework for health care providers called the “Caregiver Support Framework.” This consultation reached more than 800 caregivers and health care professionals. The findings illustrate that timely access to care for the patient is paramount to caregivers, including access to home care and respite services (that give the caregiver a break). Beyond this, it is the quality of the interaction between health care providers, patients and caregivers that matters the most. Specifically, the consultation identified four key actions that can improve the caregiver experience.
- Recognize caregivers as a valued partner in the health care team
This valuing of a caregiver’s contribution can be shown by listening to their input in discussions, hearing their perspectives and observations, answering their questions and helping them find the right services or resources. This approach creates a compassionate culture of providing care—and involves various members of the team, including clinical, front-line and administrative staff.
- Listen to the caregiver’s concerns
Being “heard” can involve several things—including caregivers having the chance to ask questions and to request resources, training or the information they feel they need to be oriented to the situation. Or, they might need someone to listen to their emotional concerns, such as their feelings of fear, loss or grief, or concerns about maintaining their own wellness and self-care.
- Identify a clear contact person for the caregiver
Having a reliable contact person can be a “lifeline” for caregivers. This person can help the caregiver deal with fluctuations and changes in the patient’s condition, find the right health care resources for the patient and feel less isolated or alone in their situation. Contact people can also help caregivers find the right training resources, counselling or social supports for themselves. Sometimes the best contact person for a caregiver can be a peer, such as another caregiver in a similar situation.
- Ensure that clinical and logistic information is shared between health care professionals or settings in a timely way
This saves time, avoids confusion, reduces mistakes or gaps in care, and minimizes disruptions to care. Caregivers want clear and reliable channels of communication about the various aspects of care at home in ways that reduce their burden and uncertainties for all involved. For example, a caregiver might want to know the name of the worker that will be visiting the home, the time that they are scheduled to arrive and what supplies, drugs or equipment will be needed. Through modern communication methods and technology the partnership can be made even more effective, reducing the amount of the caregiver’s time and energy that is spent on information gathering and coordinating with various health care staff just to ensure continuity of care.
Communicate, communicate, communicate
Better communication creates a collaborative culture of care and a partnership dynamic between patients, caregivers and health care providers. Ultimately, better communication also creates better outcomes for patients, while helping caregivers achieve the best support system for themselves.
For more information about the consultation findings and policy directions of the Caregiver Support Framework, visit alzheimer.ca/en/york/We-can-help/Support/Caregiver-Framework.
Caregivers are the people—friends, family or neighbours—who provide essential and often ongoing support, on an unpaid basis, to a person in need of assistance because of frailty, illness, degenerative disease, mental health conditions or a physical/cognitive/mental disability, or a person at the end of their life. The types of help that caregivers provide can range from personal, financial, social, psychological and physical support and assistance to hands-on care. A key type of help caregivers provide is navigating the health system to help find the right clinician, or access the right type of resource or service.
Sue Lantz, BA, MPA, is the managing director of Collaborative Aging.