Improving dementia care in Canada is a challenge to which we must rise. Dementia care strategies with a strong community focus are a key means of doing so. This paper outlines and expands upon the following five core areas that will contribute to the success of dementia care strategies: 1) the relationship between frailty and dementia is critical to understanding and addressing dementia risk and management; 2) social circumstances are important to formally consider, both as risk factors for adverse outcomes and as practical factors that contribute to care and support planning; 3) a dementia care strategy must span the continuum of care, which has important ramifications for our systems of primary, acute and long-term care; 4) prevention and public education are essential components of dementia care strategies; 5) research and evaluation are critically important to any dementia care strategy, and must be seen as core components as we strive to learn what works in dementia care. Given that a coordinated effort is needed, Canada needs to join other countries that have recognized dementia as a momentous challenge to national and global health. The time for a comprehensive national dementia care strategy is now.
In their discussion paper, “Towards a Community-Based Dementia Care Strategy: How Do We Get There from Here?” Morton- Chang et al. eloquently advocate for a dementia care strategy with a community focus (Morton-Chang et al. 2016). They astutely outline the following three key pillars that must be addressed as part of a comprehensive effort to improve dementia care in Canada: put people first, support informal caregiving and enable “ground up” innovation and change. I congratulate them on their work and on the clear presentation of their arguments. In this commentary, I highlight and expand on five key points that I see as being critical to moving towards our shared goal of improved community-based dementia care in Canada.
What Is Going On “Below the Neck” Matters. A Lot
The relationship between frailty and dementia is important to consider in the context of any discussion of strategies to improve dementia care. As Morton-Chang et al. note, people with dementia (PWD) often have multiple chronic conditions. A more general way to think about this is to understand that “the problems of old age come as a package” (Fontana et al. 2014) and so it is no accident that most PWD also have other medical and functional problems. Indeed, having numerous other (seemingly unrelated) health problems is an important risk factor for dementia (Song et al. 2011).
Frailty and multi-morbidity are also important when it comes to dementia disease expression, progression and management. A PWD who also has many other health problems will need attention to these problems as a package when care plans are made. For example, wandering is a particular concern when accompanied by mobility impairment and its attendant risk of falls. Medications used for dementia treatment may not be tolerated by frail older adults who have potentially interacting health conditions and/or existing polypharmacy. Frailty also seems to accelerate cognitive decline and dementia disease progression (Armstrong et al. 2016). For all of these reasons, it behooves us to consider a holistic view of the person, and to put in place approaches to care that allow us to consider how what is “below the neck” relates to what is going on “above the neck.” When considering this holistic view, sex and gender also have particular importance in relation to dementia and dementia care, as women are more likely to experience dementia themselves and as caregivers for others.
Social Circumstances Matter and Are a Two-Way Street
We can also apply holistic thinking to our understanding of the social context and its relevance to the health and well-being of persons living with dementia. Older adults’ social circumstances are complex. For example, while living alone may be a risk factor for adverse health outcomes, not all older persons living alone with dementia have equal risk. Consider two older women with dementia, each living alone – one may be socially isolated with few supports and contacts, whereas the other may be imbedded in a rich and supportive social network. A simplistic attempt to stratify risk based on a single variable (here, “living alone”) risks misclassification and missing the point. Broadly put, the degree to which social factors across multiple domains contribute to vulnerability to adverse outcomes can be thought of as “social vulnerability.” Considered in the inverse, social factors may also contribute to resilience and reserve, enabling older people, including those who are frail and/or living with dementia, to live optimally (Andrew 2015).
Older adults’ social circumstances have bidirectional importance, both as risk factors for adverse health outcomes and as practical factors that contribute to care and support planning. When considering social factors as risk factors, low socio-economic status (at both individual and neighbourhood levels), social disengagement, loneliness, social isolation, limited social networks, lack of social supports and social vulnerability have been associated with cognitive decline and dementia (Andrew 2016). Addressing these factors can thus be potential avenues for both prevention and intervention to reduce risk of further cognitive declines. As a care planning tool, particularly at transitions in care such as discharge from hospital and moving into continuing care services and long-term care (LTC), a clear understanding of existing social circumstances is critical to support successful transitions.
Given the complexity and interrelatedness of health and social circumstances experienced by PWD, and that dementia does not occur in isolation, the idea of an integrated seniors’ strategy, which, as Morton-Chang et al. mention, has been advocated in some jurisdictions, has merit.
A Dementia Care Strategy Must Address the Continuum of Care
As Morton-Chang et al. outline, a community focus is key as we strive to improve dementia care. Social and community contexts are particularly important for people who are living with dementia and who may be frail and vulnerable. Social supports, both instrumental and emotional, are vital. Within the health sector, primary care needs to be a cornerstone of any dementia care strategy. Morton-Chang et al. mention primary care team approaches that have shown promise in Quebec, Ontario and Alberta. Strong systems of primary care provision are important for enabling efforts at prevention and early diagnosis, continuity of care and advance care planning. With strong and appropriately resourced primary care, PWD and their families can be supported though their entire dementia journey, and can hopefully avert crisis situations such as long stays in emergency departments, which are generally not good care environments for PWD. Support for primary care is an important tangible example of an area of focus for a dementia care strategy.
There is also a lot of room for improvement in the ways we provide acute and hospital care for people living with dementia. Sensible care need not be high tech, and often the best care for frail older adults with dementia is not the most expensive care. Yet, the Medicare system, which we hold dear as Canadians, was designed at a time when acute catastrophic illness was the focus. Now that we call on it to deal with multi-morbidity and chronic illness, the model of hyper-specialized care with a “one thing wrong at once” approach often falls short for frail PWD (Andrew and Rockwood 2014).
Unfortunately (and paradoxically), hospitals are not safe places for vulnerable frail patients. Frailty and dementia have both been described as canaries in the coal mine of health and social services. Frail PWD are among the most vulnerable people who access our systems of care, and are easily let down and even harmed when these systems fall short. Seeing things in this light helps us realize that if we can critically examine our services with a view of improving care and outcomes for this vulnerable population, we are likely to improve care for everyone. It is easy to imagine myriad ways in which acute care is harmful for older people (disrupted sleep schedules, erratic lighting without regard to circadian rhythms, ambient noise, tripping hazards, sensory deprivation as glasses, hearing aids and dentures are hidden away or misplaced, extended periods of bed rest without adequate supports for mobilization, polypharmacy, lack of space for privacy and dignity, gaps in communication at discharge and other transitions in care), and it is not a stretch to understand that improving these factors would lead to better hospital care overall.
Continuing care: Long-term care and home care
Morton-Chang et al. mention that unmet needs for instrumental activities of daily living supports can tip the balance towards a PWD needing LTC placement; if they had these simple supports in place, it might be possible for them to go on living in their own homes for longer. This is true and speaks to the need for home supports to fill that gap.
As they go on to note, it is also important to consider how innovation in models of care could improve care for the many PWD who access home care and LTC. One example of innovation in models of care in residential care is Care by Design, a novel model of primary care provision in Nova Scotian LTC facilities. Care by Design aims to improve access to and continuity of primary care 24 hours a day. Rigorous evaluation of this program has shown benefits in access, continuity, stakeholder satisfaction, systematic implementation of comprehensive geriatric assessment and reduced emergency department transfers (Marshall et al. 2013, 2016).
Community at large
In many ways, a “dementia-friendly” community will be an “everyone-friendly” community. Who would not benefit from an ambient increase in patience in dealing with others, clarity in communication, compassion in interpersonal dealings, accessible transportation systems and inviting and walkable green spaces? Clearly designed, optimally placed and well-lit way-finding signage is beneficial for everyone, from PWD to those with vision impairments to visitors and tourists. For example, a recent collaboration in Halifax between art students at the Nova Scotia College of Art and Design, planning students at Dalhousie University, the Alzheimer Society of Nova Scotia and the Halifax Regional Municipality has led to changes in transit signage and way-finding, which have the potential to make getting around the city more pleasant and accessible to everyone, including PWD.
A Strong Dementia Care Strategy Should Start with Prevention
As we aim to “put people first,” enabling living well with dementia and focusing on person-centred ways to improve quality of life are indeed key. Ideally, we could expand this to the idea of living well across all stages of dementia, including an important focus on prevention. Population aging will continue increase the numbers of PWD unless we can make significant strides in prevention.
As part of a dementia care strategy, focus on social and lifestyle determinants of healthy aging is needed, along with efforts to reduce the burden of health risk factors. Along with prevention, public education (to better understand dementia and recognize warning signs) and awareness efforts to support early diagnosis are important to get the ball rolling towards accessing needed supports. All too often, people become isolated after a dementia diagnosis – this could be because of stigma (when their “friends stopped coming around” after a dementia diagnosis), limited transportation options (e.g., following driving cessation), behavioural and personality changes owing to illness and/or frailty with accumulation of other health and functional problems. Ideally, public education interventions, integrated within an overall dementia care strategy, can bring benefits for both information provision and stigma reduction.
Research Is Critically Important to Any Dementia Care Strategy
It is a “must have” rather than a “nice to have,” and must be seen as a core component rather than an add-on.
As Morton-Chang et al. note, enabling “ground-up” innovation and change is key. To build on this idea, research and evaluation must be incorporated from the beginning. In dementia care, perhaps more so than many other areas of healthcare, there are important knowledge gaps on how to best approach care. In the status quo, we are spending vast resources to barely “tread water.” Estimates of the cost of dementia care in Canada are both astounding and sobering. If we were to redirect even a fraction of a per cent of this spending to the effort to try and figure out how to improve processes and outcomes of dementia care, we would be better positioned for positive change. Given that a lot of our current spending is suboptimal (e.g., intervening in crisis rather than in proactive care, paying for long stays in emergency departments when care could be better provided in community settings, providing interventions and care that may be more harmful than beneficial for frail older PWD, etc.), the effort to improve dementia care may not, in fact, require increases in spending. As investment in research allowed us to better understand optimal approaches to dementia care and management, we would be better positioned to determine how to reallocate existing spending to find ways of “getting ahead.”
In addition to the great need for research into models and approaches to dementia care in Canada, a sound evaluation strategy is an absolute requirement to assess and refine innovative programs and models of care that are implemented as part of this culture of innovation and change. Although various evaluation approaches exist, health services and evaluation research provides an excellent opportunity to apply rigour to this enterprise. Funds budgeted for program evaluation and report writing can be reframed as contributions to a program of research that has the potential for wider knowledge dissemination and generalizability as decisions are being made about whether and how to scale up or spread innovative programs of care. As an example, the evaluation of Care by Design has taken the form of a successful research program that has facilitated program evaluation, has engaged decision-makers and other community stakeholders and has generated academic presentations and publications that have had a broader reach than would have been possible with standard report writing. Funds allocated for evaluation were successfully used as “matching funds” to leverage additional research funding, which has enabled both more rigorous evaluation and greater reach in knowledge dissemination (Marshall et al. 2013).
- Canada must join other industrialized countries (like the US, France, Australia, and the UK) in having a national Dementia Care Strategy. (The Canadian Alzheimer’s Disease and Dementia Partnership (CADDP) (http://bit.ly/2jhKT66) provides a framework for broad stakeholder integration and resources to support the development and rollout of a national Dementia Strategy. CADDP was also recently endorsed by the Senate Committee on Social Affairs, Science, and Technology, who were tasked with examining and reporting on the issue of dementia in Canadian society. See http://ccna-ccnv.ca/en/advocacy-toolkit/ for further details on rationale for integration efforts and an advocacy toolkit.)
- People are not just dementia diagnoses. A Dementia Care Strategy must include holistic consideration of a person’s health and social circumstances. (Building assessment of frailty and social vulnerability into routines of dementia care is a critical step forward.)
- Capacity building across the spectrum of care is key, as people live the dementia journey from home to primary care, acute care and continuing care. (For example, we should be identifying successful models of care – such as case management nurses (QC), the Rural and Remote Memory Clinic (SK) (http:// www.cchsa-ccssma.usask.ca/ruraldementiacare/rrmc.html), GEM Plus programs (ON) (http://www.canadiangeriatrics. ca/default/assets/File/CJG-CME%20 Vol4-2%20Wilding(3).pdf ), Home First Strategy (NB) (http://www2.gnb.ca/content/ gnb/en/departments/social_development/ promos/home_first.html), the Reitman Center Working Carers Program (ON, NS) (https://www.mountsinai.on.ca/care/ psych/patient-programs/geriatric-psychiatry/ dementia-support/caregivers-and-family-members-caring-for-someone-dementia/ working-carers-program/) and Linda Lee clinics (ON) (http://www.uwo.ca/fammed/csfm/siiren/primaryhealth/rounds_documents/Oct_11_2012_Linda%20Lee%20 Oct%2011%202012%20Enhancing%20 Dementia%20Care_JAGS_2010.pdf ) – adapting them for local use, and building on them for wider dissemination.)
- Efforts at prevention, public education and awareness should not be forgotten; they have important impacts on people’s lived experience of dementia and are key components of Canadian dementia care strategies. Examples include the Fountain of Health Initiative for Optimal Aging (www.fountainofhealth. ca), and the Alzheimer Society of Canada’s “10 warning signs” campaign and First Link early intervention program (http://www. alzheimer.ca/~/media/Files/national/Core-lit-brochures/ASC_first_link_e.pdf).
- Research and evaluation must be integrated from the beginning, and these efforts must be properly resourced. (In line with the Senate Committee’s recommendations, funneling even 1% of current dementia care expenditures into research efforts (http://www.alzheimer.ca/~/media/Files/national/Advocacy/ SOCI_6thReport_DementiaInCanada- WEB_e.pdf) would nearly triple Canada’s dementia research commitment, and put us on track to making needed advances in “care” today for a “cure” tomorrow. The Senate report further noted that investment at this level is what is needed to discover disease modifying therapies by 2025.)
It is time for action
All in all, a coordinated effort is needed. With this in mind, I would strengthen the call for a national dementia care strategy. Canada needs to join other countries that have recognized dementia as a momentous challenge to national and global health (WHO 2012). Canada’s dementia care strategy will be positioned for success and optimal impact when we include consideration of frailty, social vulnerability, the continuum of care, prevention and research.
About the Author
Melissa K. Andrew, MD, PhD, MSc(PH), FRCPC, Associate Professor of Medicine (Geriatrics) and Community Health and Epidemiology, Dalhousie University, Halifax, NS
Dr. Andrew has no conflicts of interest to declare. This work was supported by the Canadian Consortium on Neurodegeneration in Aging (CCNA), which receives funding from the Canadian Institute of Health Research (CNA-137794) and other partner organizations (www. ccna-ccnv.ca). Dr. Andrew leads a CCNA team investigating how multi-morbidity modifies the risk of dementia and the patterns of disease expression (Team 14).
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