The NACA Position on Alzheimer Disease and related dementias no. 23

7. TOWARD A NATIONAL STRATEGY ON ADRD

7.1 Background

Most provinces and territories have made some progress in developing provincial strategies on Alzheimer Disease to begin coordinating public policies at the provincial/regional level. These provincial/territorial strategies have usually resulted from some form of collaboration between provincial Alzheimer societies and respective provincial governments. The comprehensiveness of these AD strategies varies widely as does their stage of implementation.^* Ontario's Strategy for Alzheimer Disease and Related Dementias stands out as the most comprehensive. This five-year provincial strategy (1999-2004) included extensive involvement of the Alzheimer Society of Ontario and other key stakeholders, and included government funding of $68.4 million. The Strategy has formally concluded and a transitional plan is being implemented.

The Strategy consisted of a 10-point action plan to assist those with ADRD and their families and caregivers:

• staff education and training;
• physician training;
• public awareness, information and education;
• planning for appropriate, safe and secure environments;
• respite care for caregivers;
• research on caregiver needs;
• advance directives on care choices;
• psychogeriatric consulting resources;
• coordinated specialized diagnosis and support; and an
• intergenerational volunteer initiative.

During the transitional phase, work on several of the initiatives is being completed and a process has been put in place to coordinate the ongoing work, sustain the achievements of the Strategy and ensure they remain true to their original objectives, and make recommendations for the future. A Provincial Alzheimer Group has been established to provide the leadership and monitoring to the transitional phase. A Roundtable on Future Planning for People with Dementia in Ontario has also been initiated and mandated to develop a framework for planning.

In addition to involvement in provincial Alzheimer strategies, the Alzheimer Society of Canada - and its provincial and local affiliates - has done tremendous work to improve the lives of those affected by AD by increasing public awareness, providing information, providing referral to support services, developing publications and guidelines, and funding research. Other private sector organizations, both non-profit and for-profit, are involved in the development of pharmaceuticals, provision of community services, and long-term institutional care.

Alzheimer Disease and related dementias are complex problems that cannot be addressed by any single agency or sector of society. Though various sectors of Canadian society have worked to address dementia, either directly or indirectly, most of these activities have been undertaken independently. Dementia is a national challenge that does not respect jurisdictional boundaries and therefore, requires a national response.

* See table in Section VI of Appendix for description of provincial/territorial Alzheimer Disease strategies. 23

7.2 Does Canada need a national strategy on ADRD?

7.2.1 Increasing pressure

Alzheimer Disease and related dementias have a substantial health and social impact on Canadian society. The challenge of dementia will continue to grow significantly, peaking over the next two to three decades. We have a good understanding of the current and projected prevalence, and socio-economic burden, of ADRD. The current challenges related to AD are serious, but the real ones are ahead of us. Canada has an opportunity to take collaborative, coordinated action now to prevent the worst effects of this serious disability in the decades ahead.

7.2.2 Knowledge not always applied

Biomedical and psychosocial research on AD have demonstrated ways to improve treatment and care of those affected by dementia. Yet, it is clear that research knowledge is not regularly incorporated into policy, practice, program and funding decisions. Evidence-based practices are either not widely known by policy makers or are not applied evenly in all Canadian jurisdictions. Examples include:

• earlier diagnosis and full utilization of available treatments may have the potential to delay the progression to full dementia;
• improved public policies in housing, home care, support services and caregiver support can delay or avert institutionalization and improve quality of life for people with dementia and their caregivers; and
• difficult ethical questions surrounding dementia are known but have not been addressed.

7.2.3 Models exist

Measurable progress has been made at the provincial level in developing coordinated and comprehensive ADRD strategies. But no action has been taken at the national or federal level to coordinate policies within a strategy to address dementia. There are examples of successful strategies from which all can learn, such as the one in Ontario. Also, Australia implemented a National Action Plan on Dementia Care. Canada has models of nationally integrated and coordinated strategies to address other chronic diseases (e.g., Canadian Stroke Strategy, National Diabetes Strategy) that are national in scope. These strategies have included a role for the federal government, in terms of both leadership and funding. A national strategy addressing dementia can borrow from these models.

7.2.4 Collective action needed

Stakeholders in Alzheimer Disease agree that there is need for collective action. On April 21, 2004, during the Alzheimer Society of Canada's National Alzheimer Conference, representatives from the Cognitive Impairment in Aging Partnership^*, the Alzheimer Provincial Societies and the National Advisory Council on Aging met to explore the possibility and desirability of developing a national strategy on Alzheimer Disease and related dementias. It was agreed that a national strategy is needed, is feasible, and that work toward its development should commence. Further, there was consensus that in addition to addressing Alzheimer Disease and related dementias, the strategy should include mild cognitive impairment, a significant risk factor for dementia and an area of much promising research regarding early intervention.

*The partnership is an initiative led by the Institute of Aging of the Canadian Institutes of Health Research, in which the Alzheimer Society of Canada is also a partner. See the Appendix (part V) for a list of the official signatories.

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