Table 2 Caregiver experience: barriers compromising resilience

1. Caregiver

Caregivers reported barriers to resilience associated with demands on their time, changing roles and responsibilities, challenges of learning about medical conditions, their own emotional responses, financial strains, changing family dynamics, and challenges with their personal health

1.1 High demands on time and energy

Caregiving becomes increasingly demanding as the care partner becomes more mentally and physically compromised. Provision of occasional support (e.g., doctor appointments) progresses to support for everyday activities (e.g., dressing, bathing, medication administration). “Caregiving is a 24/7 job”

Caregivers sacrifice time and energy to respond to the care partner’s needs, leaving little to no time to tend to their own needs, or those of other friends and family. Their own health can easily be compromised. “It’s just simply a matter of time and energy”

1.2 Shifting roles and responsibilities

Caregivers often assume a more “parental” role, as they help with daily activities, such as dressing, feeding, and maintaining the person’s hygiene. “I do absolutely everything at home, I mean you name it I do it”

Some care partners lack insight into their limitations (e.g. managing finances), adding a tension-filled burden. As caregivers provide support, including responsibility for managing medical concerns of care partner, the caregiver’s familiarity makes them a rich resource for monitoring treatment and identifying areas of concern. “I have to go in with him now, if he has a doctor’s appointment or dentist appointment I have to go in with him to make sure the communication is there and he doesn’t get confused and things naturally get accomplished”

1.3 A new world - understanding medical infor-mation/jargon

Caregivers often feel overwhelmed by their care partner’s diagnosis, do not understand the diagnosis, and may not have the ability to search for answers. Without the necessary information, they cannot be effective supports and advocates. “I need knowledge about what they’re doing for him and to him so I can be with him and know something about why he’s doing what he’s doing”

1.4 Assumption of decision-making responsibilities

Decline in the care partner’s cognitive capacity can result in caregivers taking on responsibility for financial and legal decision-making. Caregivers who are not legal guardians may be unable to effectively advocate for the person. “I got a call from central booking; they won’t talk to me because I do not have power of attorney. I find that a big deal because I can’t do anything, I am stuck, I am so stuck” and “I’m just really frustrated and I find – I’m trying to think of the word, like I feel so stuck because I know there is stuff out there that I should be able to access, but because the way he is, I can’t do it, I don’t have the power of attorney”

Caregivers, even if they are legal guardians, noted that they are not always updated regarding the care partner’s care. “Even though you’ve signed that paper, it doesn’t necessarily mean that… you’re told enough”

1.5 Changing family dynamics

Changing relational dynamics occur throughout the caregiving process - arguments, social isolation, heightened feelings of resentment and anger may result. “My daughter hasn’t come around since before Christmas, and she only lives 5 min away. She hasn’t even called; she says, ‘mom I don’t know why you do this, put him in a home’”

Differences of opinion arise in families regarding caregiving decisions. “I was accused by family members that I was depriving her of her religious beliefs” and “I think what we all are here is decision makers and we have to make those decisions and in some cases the decisions we make sometimes conflict with family”

Caregivers contend with competing priorities and lost opportunities, particularly those with young families. Caregivers try to balance caregiving with childcare and may feel they are “being pulled in different directions.” “I had two little kids of my own to chase as well. So you really feel like you sacrificed and it starts – sorry, starts out as a good deed and it turns into a really big burden” and “So I’m constantly seeking ways to make up for missed moments”

1.6 Emotional experience

Caregivers can experience a range of negative feelings that can be barriers to resilience:

Caregivers often feel that they are not in control and are always behind. “It’s just like it’s two steps forward and one back all the time. I’ve never been ahead of the darn ball; I’m always catching up. I’m never feeling like oh great I’ve got this under control, I never do”

Caregiving was described as a continuous grieving process. This is especially true for caregivers of spouses, as the decline can signal loss of their closest companion. “Loss and grief. My husband and my relationship is not the same as he becomes sicker, it’s a caregiver/recipient relationship and so you lose companionship and friendship”

Caregivers may also mourn the loss of their caregiving role at the end of the journey. “It becomes a role, … purpose in life, and even though it was a burden, when you remove that role or purpose, they feel a loss”

Uneven sharing of caregiving responsibility can lead to resentment and anger between caregivers. “My brothers both have families and they basically both cut lines in the sand that you know like “we can only do so much and our primary responsibility is to our own families.” …They’re not quite doing as much as they could or should and I have some resentment” and “I just feel like I am carrying this burden and I’m the only child here out of 5. And I feel like I’ve been given a life sentence”

Caregivers expressed feeling guilty and selfish for wanting a break or asking for help. “I feel like a lot of guilt because I feel like I should be doing more”

Guilt also becomes salient when caregivers place care partners into a care facility. “I had to place him. So it was a tough year. And I had so much guilt. I just … it was … I just felt like it was all my fault”

Caregivers report feeling alone in their struggle. “What I find is going through this journey, people start staying away because this is what you live especially when you’re living it twenty-four/seven” and “Quite often you’re alone. There are a lot of family dynamics. Friends back away”

Witnessing the care partner’s decline forces caregivers to confront their own mortality, and question who will look after them as they decline. “I look at myself, I’m starting to think what’s going to happen to me when I get older? I don’t have kids. I don’t have, I guess, a support group there. So I’m kind of in fear if this is going to happen to me”

1.7 Mental and physical exhaustion

Caregiving can seem endless, take an immense amount of time and energy, and pose a seemingly insurmountable challenge. Caregivers can find themselves feeling “burnt out”, “bone weary tired” as if “they have not slept for ages,” and “at the end of their rope.” “I said desperation, exhaustion total mental, physical, everything, like I just can’t do this anymore, but I have to - there’s nobody else” and “I realized I hadn’t slept for 5 years because you’re always listening and waiting; you’re always just on the edge of sleep, you never actually sleep”

1.8 Financial realities

The financial burden of caregiving can be quite significant and laden with unintended consequences on the caregiver’s own financial security. Some caregivers at the prime of their careers have “had to give up” their job, and those who have lost their source of income had “no emotional strength to job hunt.” “And so, you know, I also, you know, quit my job. You just get tired”

Many caregivers, already responsible for mortgage payments and the cost of childcare, experience further financial stress due to the burden of long term medical costs, facility fees, and private care expenses. “Financial, I mean I was supporting 8 years you know on my income, it was very difficult. Still had a mortgage, still had 3 children living at home, so there wasn’t anything there for me”

Some caregivers are forced to sell their homes, use their savings, or claim bankruptcy. “So you’re left with this bill here and it’s sort of like, well you know it’s time for you to start using your RRSPs and paying for this. So now, you know, we use everything to pay for this” and “I’m on social assistance, I have no budget whatsoever to do anything sociable”

While financial assistance may be available, eligibility for funding depends on age and employment status. Younger caregivers may find themselves ineligible for financial compensation. “I actually fall into the gap of not being old enough and still working and it’s not being retired, so I have to pay the $2,000.00 a month. So it’s quite a burden. On top of that, you know, we had to move at the wrong time when the financial downturn was on so, you know, we lost a lot of money moving to try and find the right healthcare”

2 The System

Caregivers depend on healthcare professionals (HCPs) and the healthcare system to provide information regarding diagnoses, practical solutions regarding the patient’s medical concerns, and caregiver relief. While HCPs and the system offer caregivers guidance and resources, a variety of barriers were identified

2.1 Engagement with the healthcare system

Caregivers describe the system as harsh, rigid, policy-driven and unresponsive to each family’s unique set of challenges and needs. “It sometimes feels the system is all about the system and it’s not about the people” and “It was all policy-driven. There was no compassion, no integrative support considering my dad’s condition”

Management pathways seem guided by standardized assessments and institutional mandates. Processes related to hospital discharge and placement assessments can be frustrating when caregivers perceive that test scores, discharge plans, and/or placements are not representative of the person’s capacity. “They kept administering the MMSE test and the MoCA test to my dad. My father has a PhD as well and he kept scoring really high even though there were these challenges”

Navigating the system was reportedly akin to traveling through “a maze,” with information usually given in piecemeal format detached from the caregiver’s context. “You find out this little bit of information and you have to take that and … go to somewhere else to find out the next part that you need and it was just an ongoing circle”

Caregivers reported having difficulty accessing resources, often finding valuable resources through internet searches or word of mouth. “I learnt from a friend about the Alzheimer Society and when I sort of look back at dealing with the doctors, the professionals, it didn’t really come up”

Caregivers reported finding they are “fighting and begging for help.” Some caregivers prefer suffering in silence to enduring the frustration of asking for help, or being seen as the “enemy” as they advocate for better services and care. “They make you go through so many hoops” and “I have to steel myself for a battle just to ask for anything”

People who suffer an acute onset, rapid decline or delirium may find themselves losing resources that they had worked hard to arrange (e.g. long-term placement), or unable to access much needed resources that may aid their recovery (e.g. therapy, programs). “And every time she shows she’s either really, really down or really, really manically high…as she’s coming down you think ‘oh we can place her’ and then just before they place her, she drops down into the low”

2.2 Engagement with healthcare professionals (HCPs)

Caregivers noted that inexperienced HCPs have inadvertently compromised patient care. “Most people in the … healthcare system, you can say that they have dementia, they haven’t got a clue what it is. They think they do but they actually don’t”

Poor recognition of dementia symptoms can delay or prevent patients from accessing appropriate resources, timely and safe care, or placement opportunities. “My mother had been seeing her GP. She’d been verbalizing her memory issues, her concern, at which he just said it is her getting old. He never gave her any medication. He didn’t test her. He didn’t send her to a facility”

A poor understanding of the dementia can also lead to unrealistic expectations of a client’s abilities (e.g. to live independently) and withholding of care. “She’s dirty. She has outbursts. And they’re treating her like she is her own agent, that she is cognitively well and yet this is a dementia facility”

Without timely discussions of disease implications, caregivers feel left out, at a loss, and burdened by the weight of the diagnosis – unable to plan for the future and uncertain of how or from where to seek help. “I do appreciate that they’re busy, you know, they’ve spent whatever, 10, 12 years at university, but…”

When caregivers try to contribute to decisions, they at times feel dismissed and powerless despite the burden of responsibility they bear (including potential legal responsibility). “Please talk to me at my level. Show me that respect” and “The system seems to be dismissive of caregiver input, the system is unresponsive, these two different worlds”