Table 4 Caregivers experience: recommendations and priority research areas

Supports and services

Caregivers require supports and services, such as community resources, workshops, emergency management, placement options, and respite services. “We need resources, placements, guides in order to let people know how to find the right accommodation that meets the needs of both the caregiver, and the individual who’s experiencing the struggles”

Support for understanding the implications of the diagnosis, preparing for the future, and addressing concerns not covered in a medical visit. Emotional support and advice is also beneficial in decreasing distress, improving coping abilities and increasing quality of life. Caregivers would like resources and supports to be in place at the time of the diagnosis. “…to have these things done before the dementia is full blown where it’s totally out of your control and you’re in a situation like this. Pre-emptive resources would be wonderful”

Public service announcements to helps caregivers recognize they are caregiving

Because caregivers informally provide care for family members, a caregiver might spend years providing care without self-identifying as a caregivers, believing instead that they are simply helping the person. Caregivers recommend public service announcements to clarify the definition of caregiving and caregiver supports available. “I never realized until July of last year that I was even a caregiver. I thought I was a helper so I never related myself to being a caregiver”

Education for family caregivers

Caregivers identified the need for more education for family caregivers, particularly tools to better advocate for their care partners. They would like to acquire the language to work together with HCPs for the wellbeing of their care partner. “Assertive communication so that I could better deal with my husband and better advocate for him with healthcare professionals

Education for healthcare professionals

Caregivers hope that with education, HCPs will have greater confidence and more compassion when working with people suffering from dementia. “It should be the medical profession that should be getting the training to communicate to the patient and their caregivers. Reverse the responsibility”

Caregivers would like to see more training for healthcare professionals regarding:

 Recognition of and intervention for Delirium

 Recognition of different types of dementia

 Intervention strategies

 Needs of  different patient demographics

 Decision-making capacity assessments

 Effective communication with caregivers

Use of accessible language when communicating with caregivers

Communication by healthcare professionals with caregivers could be improved. Although medical jargon makes communication between HCPs more effective, caregivers and care partners do not understand the terminology. “The impression I get with doctors is that they are not talking to me on my level … I’ll sort of use the analogy when you get manuals for your TV, your PVR, it’s written by an engineer for engineers”

The use of more accessible language to convey the pathophysiology, rationale for management changes, prognosis and impact on the patient’s life is advisable. Caregivers, due to their concern for the patient’s wellbeing and safety, are keen to be informed of details regarding and updates to medical management in a timely manner

More responsive senior and caregiver centered system is desired

At times, the decision-making process in the healthcare system feels overly policy-driven and unresponsive to the needs of the person. While caregivers understand the need for objectivity in the healthcare system, more personalized care is desired. Caregivers would also like to see their input have greater impact on patient care

More resources are needed

Caregivers would like more effective and timely communications from HCPs regarding available resources at the time of diagnosis. Resources from the system and community are especially important at the start of the caregiving journey - when caregivers are uncertain of the prognosis, the implications of the illness, and its impact. “I kind of wish that I’d maybe had resources available earlier … that would enable me to have a more understanding view of things”

They also noted that resources should be accessible online, in a centralized information system, and personalized to match caregivers’ needs

System navigators and dementia health link are needed

Navigating the system can be a frustrating experience, therefore caregivers would like to have a navigator / professional advocate to guide them, recommend resources, and advocate on their behalf. “A navigator, you need someone to tell you how to get through the system” and “We went through the breast cancer, SA… had six chemos and thirty radiations, there was ten times more the resources for breast cancer than there was for early onset Alzheimer’s and I would tell you that breast cancer is a pimple on a rhino’s butt to this, I would go through it ten times compared to this”

Caregivers indicated that a specific help and health line would be beneficial. “Health Link … but just for people who have Alzheimer’s and then they could help a little bit at least to make things a little bit clearer or even when you’re just desperate… Because I know Health Link, that’s not their primary concern, but it would be just great”

More political advocacy

Caregivers would like HCPs to take on a stronger advocacy role aimed at raising the awareness of politicians to the challenges of caregiving, and advocate for more funding, support, and resources. “We as people have to start telling our MLAs, our MPs”

Financial support - expanded tax credits

Caregivers expressed the need for an expansion of the eligibility criteria regarding caregiver tax credits to include spouses. This would lessen the financial burden for families. “There’s a caregiver tax credit and it only applies to siblings or children, even friends or neighbours who are providing care; but it does not apply to spouses. So if there was a form letter that I could put my name to and just sort of personalize it to describe my situation, to send it to them”