Challenges in Obtaining Support Identified by Caregivers
This section summarizes issues and challenges facing caregivers in obtaining the practical and personal support necessary to be resilient caregivers. The following is developed from information provided by more than 250 caregivers, service providers and others across Canada, including British Columbia, Manitoba, Ontario, Nova Scotia and Newfoundland, in both rural and urban areas.
- Caregivers of seniors were asked about their roles, challenges, needs, their relationships with service providers and experiences with services for care recipients and for themselves, and gaps in getting needs met.
- Measures were taken to include caregivers from diverse backgrounds and caregivers who are marginalized.
- Service providers, caregiver advocates, educators, researchers, program managers and policy analysts were interviewed about the needs of caregivers and the challenges in meeting these needs.
There is an assumption that family members will automatically provide some care and support by becoming caregivers. Within the health and social service systems across Canada the senior in need of care is automatically conceptualized as the client and their family as a source of support and assistance to the care recipient.
“There can be a lot of resentment and anger on the part of the caregiver feeling ‘forced’ into the role. Many people don’t want to be caregivers, for a diversity of reasons”. (Caregiver)
There is a lack of clarity about the role of caregivers and the role of formal health and social services in relation to the care recipient. The type of care giving required along with how much and for how long it will be required, is not routinely part of the formal assessment and care planning for the care recipient. Service providers need to prepare caregivers for their role by informing them about issues such as the care receivers’ health condition and legal and financial matters.
“There are no real goals in service provision about providing care to caregivers, so that leads us to a sticky place where staff are trying to work a balancing act between what they can provide and what they should provide”. (Service provider)
The needs of the caregiver in their own right are not formally assessed. Their capacity to provide care is generally assumed. Caregivers are not formally assessed in terms of their health, social supports, social and emotional needs, financial circumstances, competing obligations, relationship with the care recipient or family dynamics – all factors that could impinge on their willingness or capacity to provide care .
“Service providers often don’t see the level of help required because all they see is that the work is done (i.e. clean house, clean client) and not the amount of work that goes into it – they think the caregiver doesn’t need help”. (Caregiver)
Obtaining appropriate information, knowledge and skills to manage such things as medical procedures, dietary needs, challenging behaviors and psychiatric symptoms is difficult. Information and education needs to be provided through a variety of mediums and opportunities for personal consultation made available.
“As a caregiver, I get frustrated from lack of information about services and what to expect in caregiving role”. (Caregiver)
Caregivers may have difficulty discovering services for care recipients, or in accessing them. This is especially true when the care recipient has multiple needs that may require the services of a number of different agencies/providers, and when caregivers lack the energy to track down services and apply for them.
“Frail and/or elderly caregivers are often too tired or stressed out to know how, or to follow through, with directions to accessing services”. (Service Provider)
Services available to care recipients, (e.g. home support, adult day care, volunteer visiting, accessible transportation) and how they are delivered, are not designed with the needs of caregivers in mind. Caregiving is 24/7 and yet services in the community are largely confined to business hours. For example, it is almost impossible to obtain a quick response to deal with double incontinence at night, or picking up someone who has fallen. Adult day programs often demand that the caregiver deliver and collect the care recipient. Specialized transportation services are difficult to arrange, need advance planning and may or may not allow the caregiver to travel with the care recipient.
“There’s a real tension between the of scheduling services [based on the organization’s needs] versus the burden of unpredictable care scheduling for the caregiver. But sometimes that’s the only time we can come [for home care]”. (Service Provider)
Services intended to support caregivers (e.g., respite care and psycho-educational or support groups) are neither individualized nor flexible enough to meet many caregivers’ needs. Respite is an outcome and requires an individual approachfor one person it might be a good night’s sleep, for another a massage or a regular poker night with friends. The way in-home and institutional respite are currently provided is very limited and inflexible, and for many caregivers, fails to result in respite.
“In our community there’s one family that’s been waiting for a respite bed since October and it’s now December. Services need to be flexible otherwise it’s not a useful tool; we need more beds so they are not booked all the time”. (Service provider)
The peripheral role assigned to caregivers by the health and social service system often leaves caregivers feeling discounted, devalued and not respected. They have no formal voice in the policies or programs that affect those they care for, and by extension, themselves. Frequently they are not consulted in care planning, discharge planning or treatments.
“Some service providers don’t give us credit for how much we know, and they assume they know what’s best for [care recipient]. At worst, they don’t even ask you how you feel about what’s going to happen next”. (Caregiver)
Caregivers are as diverse as the Canadian population but policies and programs that affect them seldom take into account or address this diversity. Some caregivers and/or those to whom they provide care may as a result be marginalized.
“I come from a culturally diverse area – Aboriginals from Innu, Inuit, Metis make up a portion of my region’s population. Culturally there are many barriers still in this day and age that continue to plague people of my community to meet on common ground”. (Service Provider)
Caregivers (especially those living with the care recipient) often feel overwhelmed by number of services and workers involved. As a result both care recipients and caregivers find it challenging to develop relationships with service providers, jeopardizing their trust in the quality of care provided. Compounding this, caregivers may need to explain the needs of the care recipient and how to meet them over and over again to the different service providers.
“I have to deal with many different service providers and this is very stressful and disrupting for me and for [care recipient]. I have to tell the same story over again each time a new person gets added and that gets exhausting”. (Caregiver)
Recent policy shifts emphasizing reduced stays in hospitals and increased post-acute home care have had negative impacts on caregivers. First it is assumed that such caregivers are available and able to provide care to the hospital patient who has moved home “sicker and quicker” than in the past. Secondly, the increased emphasis on post-acute home care has deflected resources and the importance of the preventative-maintenance model of home care -one in which supports for the person living with chronic illnesses facilitates their ability to remain in the community and decreases their use of hospital services.[i]
“In our quest to professionalize services, we have lost focus on the unmet needs of people who don’t need an MRI – they just need a ride to the store”. (Service provider)
[i] Hollander, M. and Chappell, N. (2002). Final report of the national evaluation of the cost effectiveness of home care. Synthesis Report. Report prepared for Health Transition Fund, Health Canada.