Caregiving in the 21st Century
The global phenomenon of “family” as primary and secondary caregivers was highlighted at the FICCDAT Caregivers Conference. Building upon the outcomes of the 5th International Carers Conference in Leeds, United Kingdom in 2010 the FICCDAT event aimed to drill down on some of the most pressure policy and practice issues.
With the diagnosis of dementia comes a growing cohort within the “carer population” for whom specific health and social policy, research, education and service development is essential. Seniors and caregivers/carers will be familiar with many of the factors that must be addressed by an effective health and social system. As such, international leaders, health care practitioners, policy makers, government representatives and carers of seniors explored with delegates the potential of caregiver-related policy to influence system change and also to brainstorm practical solutions to address the needs of the caregiver/carer population.
Across the course of the conference caregiver policies and programs from many parts of the world were compared and contrasted including the “Reitman Centre CARES for Carers ProgramTM” in Canada, “Carers NSW” in New South Wales, Australia and the “National Alliance for Caregiving” in the United States –presentations on the rationales and evidence-based goals of their respective programs were described. While some programs exist for the purpose of advocacy for caregivers, others have specific clinical goals and aim to address the specific needs of caregivers (e.g. reducing intensity of negative feelings).
A further theme in the conference related to increased incidences of chronic disease and disability, the emergence of smaller, less traditional families and a movement toward de-institutionalization. This presenters expressed would strain both the formal public sector health and social services and the capacity of informal networks to deliver adequate caregiving services.
Family/friend caregivers are subject to specific economic, social and health stresses such as: increased out-of-pocket expenses, lost wages and changes in pension entitlements; marginalization, isolation, loneliness and changes in their identity within the community; mental health disturbances such as anxiety and depression; and physical injuries such as back and neck conditions.
Participants engaged in discussions as to whether an evidence-based caregiver program could catalyze system change in so much as “a grassroots approach can be a powerful way of “knocking” the system into action and making ripples at all levels”. Changes could only happen with: political (and sustained financial) support; and a shared definition of ‘carer’ coupled with the formation of a caregiver/carer’s movement. Other strategies essential for system change to occur include: Promoting cross-sectoral collaboration and speaking with one voice; building evidence and presenting solutions; involving the general public; building on and bridging successful programs; fostering dedication; recognizing multi-cultural qualities; and acknowledging the evolving nature of new generations of caregivers.
The conference highlighted the conditions for enabling change including the need for a cohesive body of people bound by shared identity, goals or loyalty to form a social movement that advocates for change. This way, differences would be respected and work on a “broad and common agenda” may move forward. Sustaining political attention by being solution-oriented was also considered as a useful strategy. Tying in caregiver/carer issues with related causes, while maintaining distinction of the caregiver issues, may also provide some leverage to secure political recognition. Achieving legal recognition at the national level was seen as a potentially game-changing ingredient for inducing systemic change. High quality data that includes analysis of gender roles, age and culture is essential for garnering both political and public support for caregivers.
Canada, as with many industrialized countries, is experiencing a major change in the demographic structure of the population. Population aging in an industrialized country such as Canada is associated with changes in the nature and productivity of sectors of the labour market and the knock on effect to community and industry.
Caregiving and the caring relationship are evolving from a community, political and social perspective across the world. The conference delegates confirmed the need for a global charter on the ethics of family caregiving that could serve as a benchmark formally recognising the value of each and every relationship and provision of care that complements the formal health and social care system. Furthermore this charter would speak to the external drivers such as urbanisation, globalisation and technology impacting on the caregiver role.