The number of people living with dementia in Canada is on the rise. So, too, is the number of unpaid caregivers—more than 8 million, at last count—with that number expected to increase over the next 10 years.
If you are a physician who has had to deliver a diagnosis of dementia to patients and their families, you know first-hand that sharing that news can be difficult and challenging. But in doing so, have you ever found yourself speaking exclusively to the family member or caregiver―even if the patient was right there in the room?
It may well be that you spoke directly to the caregiver because you thought the patient may not be cognitively capable of understanding.
This is the intuitive thing to do. But to the caregiver, who may not be attuned to your approach, it may feel like you are shutting out their loved one. This is a common experience for caregivers who look to health professionals first for guidance, support and, most of all, empathy.
Sharing information with patients and their caregivers together is one of the subtle shifts that will go a long way.
As one caregiver has stated, “It’s the small things that matter.”
How to initiate the shift
Shifting to an inclusive and compassionate approach has obvious benefits for patients and their families. But it can have tremendous benefits for health professionals too.
Caregivers want to be seen as an integral part of the care team—because they are. Along with caring for their loved one’s many needs, caregivers are your “eyes and ears on the ground.” They are intimately familiar with your patient’s health and daily routine. They are in tune with moods, nutrition choices, cognitive abilities and energy levels. Who better to report on changes in a patient’s health or care needs?
It’s important to recognize that often caregivers themselves are often dealing with a host of emotional and, in some cases, physical health issues of their own. No matter how “together” a caregiver may like to think they can be, their world has been shaken up. Caregivers may be worried, nervous and anxious―just like the patient. They might find it difficult to speak with health care providers. They often have no idea what to expect down the road.
Did you know?
- Almost 75% of the care that older adults get comes from their family.
- Over 1 in 4 (27.8%) Canadians who work also take care of elderly friends or family.
- On average, unpaid caregivers devote 19 hours per week to caring for loved ones (often seniors) with chronic illnesses or life-limiting disabilities.
Understanding caregivers’ 4 main challenges
Caregivers are often thrust in a situation suddenly due to an unforeseen incident, such as a loved one’s stroke, fall or quick diagnosis of dementia. Other times, it’s an “incremental series of losses.” Family relationships and dynamics are altered. A caregiver is sometimes sandwiched between caring for an aging loved one and their own children.
Increasingly, there is no upper limit for the expectations of people providing unpaid care. Their responsibilities can vary greatly, from providing one hour a week for grocery shopping and errands, to providing 24/7 nursing care, such as toileting, wound care, and managing feeding tubes and ventilators.
Sometimes, caregivers take a break from working outside the home in order to care full-time for their loved one. This means not only lost wages for the caregiver, but also a gap in their professional career.
Caregivers can experience isolation and loss of their own social time with colleagues, friends and family. And it’s not unusual for caregivers to grieve the loss of their familiar relationship with their spouse or adult parent.
Caregivers can experience a host of physical and emotional problems while managing their caregiving responsibilities. Compassion fatigue can include sleep deprivation, depression and decline in quality of life.
How to become a “compassionate gatekeeper”
1. Do your homework
- Educate yourself on the nature of your patient’s condition and how to explain it to caregivers:
- signs and “red flags”;
- what to look for, changes to be aware of;
- when it’s time to consider a move to long-term care.
- Educate yourself on the unique needs of caregivers (I included some above to get you started).
- Consider the family's social determinants of health—the economic and social factors that can affect their health outcomes. Explore the benefits of taking a population health approach to caregiving, drawing on community resources.
- Familiarize yourself with retirement residences in your community. Depending on the level of care your patient needs, residences can offer a place for them to receive quality care while they're on waitlists for long-term care.
- Stay up to date with the long-term care wait lists in your community. Most provincial health organizations keep a running list like this one.
2. Be helpful
- Include caregivers in meetings to discuss goals and expectations;
- Provide clear information for patients and caregivers on medical tests, diagnoses and illness, treatment choices and medication. For example:
- Explain test results and what they mean.
- Explain what further tests might be necessary, why it would need to be done and what the test might show.
- Tell families about their loved one’s illness and what to expect as time goes on. Encourage open dialogue and answer all their questions.
- Talk about treatment options and any physical, mental or emotional side effects. Also explain why (in some cases) there may be no treatment options.
- If new prescriptions are needed, provide details on why the patient needs the medicine.
- Provide the family with a list of resources: in-home private services; retirement living; public health; local seniors’ organizations; hidden resources at community centres, libraries, cultural centres, recreation facilities; meal-delivery services; information on financial and tax breaks.
- Talk about respite care and its benefits:
- Provide a list of facilities (for example, local retirement residences) that can offer respite care. Many can provide assisted living, including secured memory care, for a period of a few days to a few weeks.
- Become familiar with and refer families to local professional senior living advisory services.
3. Explore creative and innovative solutions
- Consider adopting an integrated approach to care.
- Think digital. Is access to virtual care and consulting a solution that could work for you and your patient? It could be.
- Sometimes caregivers are required to support their loved ones with direct care—toileting, ventilator, wound care, feeding. Are there any informative online resources that you can share to help train them?
- Connect families to Telemedicine.
4. Provide care for the caregiver
- Develop a self-care plan for caregivers that focuses on their physical and mental health.
- Set up regular check-ins and appointments with caregivers, as part of the family treatment plan.
- Source out, connect with and refer caregivers to support groups (it’s one of my resources below).
5. Design a personalized roadmap or pathway
Whether you are an acute care provider, family physician or specialist:
- Help with orientation for the caregiver.
- Provide them with access to a checklist based on local resources.
- When discharging, transferring or treating at home:
- Understand the importance of a “warm hand-off”.
- Ask: Can the caregiver meet the patient’s needs? If not, what help is available?
- Assess: Does the caregiver need any special training? If possible, provide access to training, support, back-up, resources.
- Communicate: explain the next steps and tell caregivers what to expect for other appointments and tests (physio, geriatric assessment, bloodwork, rehab and/or pharma).
There’s no “one size fits all”
When considering these suggestions, know that every situation is unique. There is no one-size-fits-all approach when it comes to working effectively with caregivers.
Compassion for caregivers comes full circle. Along with tending to your patient’s many needs, a critical part of the caregiver’s job is to provide you with insights and information to better treat their loved one.
Recognizing that you play an important role in equipping caregivers with the tools to do their job is essential to becoming a well-oiled machine.
I’ve listed some additional organizations with resources below to get you started. Some are national while others are Ontario-specific. But, I encourage you to find local and provincial resources wherever you may be.
- Caring for Caregivers Handbook by RGPs Ontario
- Ontario Caregiver Organization helpline
- Caregiving strategies
- Ontario Caregivers Coalition
- The Change Foundation
This material is for informational purposes only. It is not intended to be a substitute for professional medical advice and should not be relied on as health or personal advice. The opinions stated by the authors are made in a personal capacity and do not necessarily reflect those of the Canadian Medical Association and its subsidiaries including Joule. Feel passionate about physician-led innovation? Please connect with us at firstname.lastname@example.org.