Response to the Central LHIN Integrated Health Service Plan Strategic Framework

Transcription

1 Response to the Central LHIN Integrated Health Service Plan Strategic Framework The Impact of Dementia on the Strategic Priorities with Ideas and Solutions on How to Constructively Address Those Impacts Evidence Brief Prepared and Submitted by: Loren Freid, Chief Executive Officer July 27, 2012

2 TABLE OF CONTENTS PREAMBLE P. 3 INTRODUCTION PP. 4 IHSP : THE IMPACT OF DEMENTIA ON THE STRATEGIC PRIORITIES PP ) ENHANCE SYSTEM PERFORMANCE (ACCESS TO CARE) PP ) ACHIEVE THE HIGHEST QUALITY OF CARE PP ) STRENGTHEN INTEGRATED HEALTH CARE DELIVERY PP. 9 4) IMPROVE EQUITY AND THE PATIENT EXPERIENCE PP CONCLUSION P. 13 FOOTNOTES P BIBLIOGRAPHY P. 16 ACKNOWLEDGEMENTS P. 17 APPENDIX: P I) THE EFFECTS OF DEMENTIA ACROSS ONTARIO S PP AND CENTRAL LHIN S HEALTH CARE SYSTEMS II) DEMENTIA PROJECTIONS BY LHIN REGIONS P. 20 Dementia Evidence Brief, Alzheimer Society of York Region, July

3 Our society now confronts a growing phenomenon that of a burgeoning aging population of individuals living with frailty and/or multiple co-morbidities, all of which may be confounded by the challenges of dementia. * Dr. David Walker, Provincial ALC Lead, 2011 PREAMBLE The following comments and feedback are provided by the Alzheimer Society of York Region in response to the Central LHIN s request for stakeholder input and feedback on the draft strategic framework for the Integrated Health Service Plan (IHSP) Our comments attempt to build on the existing planning efforts of the Central LHIN and focus on further defining health system needs and strategies to improve health outcomes. # D. Walker. Caring for Our Aging Population and Addressing Alternate Level of Care, Report Submitted to the Minister of Health and Long-Term Care, 2011 Dementia Evidence Brief, Alzheimer Society of York Region, July

4 EXECUTIVE SUMMARY For the first time in Ontario s history, older people will soon out number younger people. This new reality will affect how health care is provided and used in ways we have never seen before. And the increasing prevalence of dementia with age being its most significant risk factor will impact every aspect of that system. In many ways, the Central LHIN - with York Region as its largest and most diverse populated area is ground zero for this new reality. Over the next ten years the aging population within our service area is projected to grow by 40% 1, which is higher than the provincial average. Between 2012 and 2020 the prevalence of Alzheimer s disease and related dementias will grow by 43% 2, which is higher than the national average. Although older people generally age well, those aging with dementia require special care and attention. In short, we need careful focus and action to impact these changing demographic and health care realities. Dementia is a brain disorder characterized by an impaired and progressive decline of cognitive functioning that affects learning and memory, mood and behavior, as well as the ability to conduct daily activities and high level functions such as management of other chronic conditions. Degenerative brain illnesses, such as Alzheimer s disease, vascular dementia, frontotemporal dementia and Lewy body disease lead to irreversible forms of dementia that are progressive and shorten life expectancy. To date, there is no known cure or effective means by which to delay the onset or progression. The median time of survival for Alzheimer s disease (which accounts for 60-70% of dementia cases) has been estimated at 7 years. 3 It is important to emphasize that dementia is not part of normal aging; it is a chronic, progressive and ultimately fatal disease. While the risk for dementia does increase with age, an estimated 2-10% of all cases start before the age of This year, the World Health Organization has recognized dementia to be a Public Health Priority on a worldwide scale. As the most reliable dementia prevalence rates have been generated in studies of people over the age of 65 and given the Central LHIN s focus on seniors care, this report will focus its attention on seniors. The following document is intended to demonstrate the epidemiological evidence of the growth of dementia and its projected impact on the strategic priorities within the IHSP draft framework, as identified in a June 4, 2012 slide deck presentation to the CSS Network by a Central LHIN official, and offers ideas and solutions for constructively addressing those impacts. Dementia Evidence Brief, Alzheimer Society of York Region, July

5 IHSP : THE IMPACT OF DEMENTIA ON THE STRATEGIC PRIORITIES 5 1) ENHANCE SYSTEM PERFORMANCE (ACCESS TO CARE) Advance and maintain improvements across Ministry-LHIN Performance Agreement indicators, including: Alternative Level of Care (ALC) and emergency department wait times, surgical and diagnostic wait times, quality, mental health and access to community care A key area of focus will be to reduce length of stay in ALC to improve quality of care and access to acute hospital services Our Response: Dementia is the key diagnosis related to hospitalizations with ALC days. 6 The term alternate level of care (ALC) describes the use of hospital beds by patients who no longer require acute care services and are waiting for transfer to more appropriate settings, such as residential care or rehabilitation. In an Aging at Home Impact Analysis, the Central LHIN identified dementia as the top condition by volume of Alternate Levels of Care (ALC) days. 7 The Canadian Institute for Health Information has determined that one out of four Canadian seniors hospitalized with ALC days in 2009/10 had a diagnosis of dementia. Moreover, hospital stays involving clients with dementia were twice as long on average (median, 20 versus 9 days) than for seniors without the disease. 8 In a recent study, the Institute for Clinical Evaluative Sciences indicated that the Central LHIN had 669 ALC hospitalizations involving community-dwelling older adults with dementia. 9 Without improved dementia care strategies, the number of ALC hospitalizations involving seniors with dementia could grow in proportion to the increase in dementia prevalence. By 2016, the total number of ALC hospitalizations involving seniors with dementia in the Central LHIN could surpass 1,000 per year. Dementia Evidence Brief, Alzheimer Society of York Region, July

6 Figure 1. Acute care hospital bed gridlock will continue until effective strategies focusing on the dementia population are put into practice. Our Recommendations to Central LHIN: Maximize Community Sector Capacity by Enhancing Alternate Care Options with a Dementia Focus Dementia has emerged as the leading condition by volume of ALC days; and in a recent survey (2009) by the Alzheimer Society of York Region, 64% of its clients reported that without the services and respite provided by the cognitively-impaired D.A.Y. programs, they would have had to place their family member in long term care sooner. The creation of new community-based service delivery programming can mitigate the risk of inappropriate hospitalization and institutionalization that would exacerbate existing access and ALC challenges. We therefore propose: 1. Recent initiatives, such as the Behaviour Support Ontario project and various enhancements to geriatric services through the Aging at Home process as well as CCAC-based initiatives [such as Balance of Care] be maintained and enhanced. 2. To build on the existing capacity of the community sector to deliver services that reduce ALC days and avoid unnecessary ED visits by developing effective strategies for the dementia population, such as enhancing and implementing additional community services from a dementia-focused perspective. Dementia Evidence Brief, Alzheimer Society of York Region, July

7 2) ACHIEVE THE HIGHEST QUALITY OF CARE Advance a regional quality improvement plan across the full continuum of care, including but not limited to strategies related to avoidable hospitalizations/readmissions ( best path ), preventable adverse events, primary care, etc. A key area of focus will be to strengthen inter-organizational alignment of quality strategies across the continuum with respect to high system or complex users to focus on most appropriate quality of care and reduce inappropriate variation in care delivery Our Response: Complexity and hospitalization: The Dementia Domino Effect In Ontario, greater than 90% of community-dwelling seniors with dementia are living with two or more co-existing chronic medical conditions. 10 People with dementia face extraordinary challenges self-managing their general health and chronic conditions (e.g., diabetes, coronary artery disease, heart failure, chronic pulmonary disease, etc.) due to problems with memory, perception of symptoms, decision-making and expressive language. 11 As a result, potentially treatable conditions become exacerbated in the presence of dementia. People with dementia are prone to cycles of ED-use and hospitalization, stabilization, discharge to home, poor self-management, deterioration, and readmission to the hospital. 12 This interaction between co-morbidities has been called the dementia domino effect. Individuals with dementia are also at a heightened risk for delirium and functional impairments in response to acute illness. 13 Recovery from delirium is often slow and sometimes incomplete, resulting in long hospital stays, alternate level of care days, or premature LTC placement. Our Recommendations to the Central LHIN: 1. Promote Brain Health Across the Lifespan, including Self-management for People with Dementia The Commission on the Reform of Ontario s Public Services (Drummond Report) recommends focusing on outreach to patients who need preventative care, particularly chronic disease and medication management. We propose that this outreach focus on people with dementia. 2: A Dementia Focus to Complex Care Dementia has emerged as the leading cause of both disability and dependence for any chronic disease (WHO Global Burden of Disease Report from 2004). As well, there is increasing evidence linking high co-morbidity of diabetes and dementia. Services for persons with complex Dementia Evidence Brief, Alzheimer Society of York Region, July

8 care needs would benefit from organizing the management and delivery of chronic disease services from a dementia framework (with the support of the Alzheimer Society of York Region). Dementia Evidence Brief, Alzheimer Society of York Region, July

9 3) STRENGTHEN INTEGRATED HEALTH CARE DELIVERY Advance a more integrated system of care across the continuum, from primary care, through to community, acute and long-term care A key focus will be to integrate primary care planning into the LHIN mandate and pursue regional program delivery models where appropriate to streamline access and improve patient flow and care transitions (e.g., palliative care, behavioural supports, etc.) Our Response: Research in Ontario shows that seniors with dementia are intensive users of health-care resources. 14 People with dementia are Twice as likely to be hospitalized compared to seniors without the disease. Twice as likely to visit emergency departments for potentially preventable conditions. More than twice as likely to have alternate level of care days when hospitalized. Nearly three times more likely to experience fall-related emergency room visits. Our Recommendation to Central LHIN: Improve Access to Primary Care and Diagnosis of Cognitive Impairment It is critical for persons diagnosed with dementia and their families and their health care professionals who support them to all recognize that early access to ongoing, reliable support and information is critical when living with the many challenges that this disease brings. Strengthening and supporting an integrated supportive care network throughout the dementia journey is vital for the person diagnosed with the disease and their supportive care partners. An understanding that connection to this support early in the disease process can mitigate some of the disease challenges will enhance system functioning and foster clients receiving the right care at the right time. Strengthening ties with primary care, acute care and community care options are integral for the successful strengthening of the health care system. Dementia Evidence Brief, Alzheimer Society of York Region, July

10 4) IMPROVE EQUITY AND THE PATIENT EXPERIENCE Advance improvements in equity of access to services across the LHIN, with a key focus on reducing avoidable health disparities and improving health outcomes for key populations such as newcomers and other higher risk populations Continue to work with French and Aboriginal populations to enable equitable access to services in their communities Our Response: Dementia knows no boundaries Dementia affects all ethnicities, all socio-economic backgrounds and occurs in all geographic areas of the Central LHIN. The effects on Ontario s families and caregivers The primary caregiver forms a major component of the Central LHIN s high risk population. According to Ontario home care assessments, most people with dementia have a least one individual providing unpaid care. 15 Primary caregivers are most often spouses or adult children and in-laws. In addition, friends, neighbours or other relatives may also devote time and resources to caregiving. The care needs of people with dementia will increase significantly as the disease progresses. Cognitive decline and intensifying functional impairments result in greater needs for assistance with basic activities of daily living. In the later stages of dementia, estimates of total care hours contributed by family and friends can range from seven to fifteen hours per day. 16 Yet, high-needs seniors receive, at most, a few more hours of home care per week than those with moderate needs. 17 In some cases, seniors with high needs actually receive fewer care hours. 18 The additional care is contributed by friends and family. Evidence shows that people caring for someone with dementia Provide 75% more care hours than other caregivers. 19 Report feelings of distress, anger or depression, or inability to continue care in one out of five cases. 20 A recent Canadian Institute for Health Information study determined that rates of caregiver distress were five times greater among individuals caring for seniors with moderate to severe Dementia Evidence Brief, Alzheimer Society of York Region, July

11 cognitive impairment likely resulting from Alzheimer s disease or other forms of dementia compared to individuals caring for seniors without cognitive impairments. 21 Family caregivers experience physical, psychological, and emotional strain as well as financial hardship and occupational insecurity. 22 Moreover, one quarter of informal caregivers are living with two or more chronic health problems. 23 Individuals providing informal care for someone with dementia are at high risk for depression and stress that can aggravate their own existing conditions thereby magnifying the strain that dementia places on scarce health care resources. In a recent national survey of Alzheimer s disease caregivers aged 44 to 64 years old (nonspouse) 24 35% reported declines in general health; this rate increased to 60% among live-in caregivers. 71% reported disruptions to employment, and 14% of those surveyed were forced to leave work or retire early. This year, Ontarians caring for family members and friends with dementia will contribute an estimated 100 million unpaid caregiving hours. This number is expected to grow steadily to more than 120 million hours by 2016 and surpass 140 million hours by Figure 2. Dementia Evidence Brief, Alzheimer Society of York Region, July

12 Our Recommendation to the Central LHIN: Identify Informal Dementia Caregivers as a Significant Sector of the High Risk Population The dementia caregiver is critical in providing support and care to the person living with dementia. Care, attention and resources need to be focused on the dementia caregiver; if we don t we risk placing people who are already considered a high-risk population (persons with dementia) at even greater risk. Therefore we propose that the Central LHIN formally address, consider and support the needs of the primary dementia caregiver by enhancing services to this population. Dementia Evidence Brief, Alzheimer Society of York Region, July

13 CONCLUSION As demonstrated, dementia severally impacts all of the strategic priorities of the Central LHIN s IHSP draft framework. What s more, by 2020, the Central LHIN will have the highest number of people living with a form of progressive, degenerative dementia in all of Ontario. 26 If nothing further is committed to addressing this rising tide within the IHSP , dementia will have a potentially crippling impact on our families, ALC days, health care costs, and the local economy. Given that part of the mandate of the LHINs is to consider major trends and respond at a local level, we are urging the Central LHIN to adopt an integrated care strategy in its IHSP Strategic Framework that formally recognizes the cumulative impact of progressive, degenerative dementia on the health care system. The Alzheimer Society of York Region is committed to supporting the Central LHIN s success by being a key partner in the advancement of the IHSP system priorities and working with the Central LHIN in developing solutions needed to achieve its goals. Dementia Evidence Brief, Alzheimer Society of York Region, July

14 FOOTNOTES 1. Central Local Health Integration Network website, Appendix II: Dementia Projections by LHIN Regions. Dementia prevalence was calculated using 2006 Censusbased Ministry of Finance Estimates ( ) & Projections ( ) for Local Health Integration Networks (unpublished, updated May 2011) and prevalence rates from the Alzheimer Society of Ontario, Projected Prevalence of Dementia: Ontario s Local Health Integration Networks, April 2007 (based on the Canadian Study of Health and Aging, 1994) 3. World Health Organization, 2012, Dementia: A Public Health Priority 4. Ibid. 5. Central Local Health Integration Network, Integrated Health Service Plan, slide deck, presented by Thomas O Shaughnessy to CSS Network Steering Committee, June 12, Wait Time Alliance, 2012, Shedding Light on Canadians Total Wait for Care: Report Card on Wait Times in Canada 7. Central Local Health Integration Network, Aging At Home Impact Analysis, Canadian Institute for Health Information, Health Care in Canada, 2011: A Focus on Seniors and Aging 9. Ho, et al. Health System Use by Frail Ontario Seniors, Institute for Clinical Evaluative Sciences, Gill, et al. Health System Use by Frail Ontario Seniors, Institute for Clinical Evaluative Sciences, Phelan et al. Journal of the American Medical Association, 2012, 307(2): Report of the Standing Committee on Health, Chronic Diseases Related to Aging and Health Promotion and Disease Prevention, May Phelan, op. cit. 14. Gill, op. cit. 15. Ibid. 16. Davis, et al. International Journal of Geriatric Psychiatry, 1997, 12: Health Council of Canada, April 2012, Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada? 18. Sinclair et al. Turning a private trouble into a public issue, Alzheimer Society of Ontario, Health Council of Canada, April 2012, Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada? 20. Gill, op. cit. 21. Canadian Institute for Health Information, August, 2010, Supporting Informal Caregivers The Heart of Home Dementia Evidence Brief, Alzheimer Society of York Region, July

15 Care 22. Miller, et al. International Journal of Geriatric Psychiatry, 2012, 27: Health Council of Canada, op. cit. 24. Black et al. International Journal of Geriatric Psychiatry, 2010, 25: Alzheimer Society of Ontario, 2009, Rising Tide: The Impact of Dementia in Ontario, Dementia projections for Ontario LHINs, Appendix II of this report Footnotes to Appendix I 27. Dementia prevalence was calculated using 2006 Census-based Ministry of Finance Population Estimates ( ) & Projections ( ) for Local Health Integration Networks (unpublished, updated May 2011) and prevalence rates from the Alzheimer Society of Ontario, Projected Prevalence of Dementia: Ontario s Local Health Integration Networks, April 2007 (based on the Canadian Study of Health and Aging, 1994). 28. Daviglus et al. Archives of Neurology, 2011, 68(9): Ontario LHINs: Erie St. Clair (ESC), South West (SW), Waterloo Wellington (WW), Hamilton Niagara Haldimand Brant (HNHB), Central West (CW), Mississauga Halton (MH), Toronto Central (TC), Central [C], Central East (CE), South East (SE), Champlain (CH), North Simcoe Muskoka (NSM), North East (NE), North West (NW) Footnote to Appendix II 30. Dementia prevalence was calculated using 2006 Census-based Ministry of Finance Estimates ( ) & Projections ( ) for Local Health Integration Networks (unpublished, updated May 2011) and prevalence rates from the Alzheimer Society of Ontario, Projected Prevalence of Dementia: Ontario s Local Health Integration Networks, April 2007 (based on the Canadian Study of Health and Aging, 1994) Dementia Evidence Brief, Alzheimer Society of York Region, July

16 BIBLIOGRAPHY Black et al. Canadian Alzheimer disease caregiver survey: baby-boomer caregivers and burden of care. International Journal of Geriatric Psychiatry, 2010, 25: Daviglus et al. Risk Factors and Preventive Interventions for Alzheimer s Disease. Archives of Neurology, 2011, 68(9): Davis et al. The Caregiver Activity Survey (CAS): Development and Validation of a New Measure for Caregivers and Persons with Alzheimer s disease. International Journal of Geriatric Psychiatry, 1997, 12: Dementia: A Public Health Priority. World Health Organization, 2012 Gill SS, Camacho X, Poss JW. Community Dwelling Adults with Dementia: Tracking Encounters with the Health System. In: Bronskill SE, Camacho X, Gruneir A, Ho MM, editors. Health System Use by Frail Ontario Seniors: An In-Depth Examination of Four Vulnerable Cohorts. Toronto, ON: Institute for Clinical Evaluative Sciences, 2011 Health Care in Canada 2011: A Focus on Seniors and Aging, Canadian Institute for Health Information Ho MM, Camacho X, Gruneir A, Bronskill SE. Overview of Cohorts: Definitions and Study Methodology. In: Bronskill SE, Camacho X, Gruneir A, Ho MM, editors. Health System Use by Frail Ontario Seniors: An In-Depth Examination of Four Vulnerable Cohorts. Toronto, ON: Institute for Clinical Evaluative Sciences, 2011 Miller et al. Caregiver burden, health utilities, and institutional service use in Alzheimer disease. International Journal of Geriatric Psychiatry, 2012, 27: Phelan et al. Association of Incident Dementia with Hospitalizations. Journal of the American Medical Association, 2012, 307(2): Rising Tide: The Impact of Dementia in Ontario, , Report from the Alzheimer s Society of Ontario, 2009 Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada? Health Council of Canada, April 2012 Shedding Light on Canadians Total Wait for Care: Report Card on Wait Times in Canada, Wait Time Alliance, June 2012 Smith J (Chair), Report of the Standing Committee on Health, Chronic Diseases Related to Aging and Health Promotion and Disease Prevention, May 2012, 41 st Parliament, 1 st Session Sinclair et al., Turning a private trouble into a public issue, Alzheimer Society of Ontario, 2010 Supporting Informal Caregivers The Heart of Home Care, Canadian Institute for Health Information, August 2010 Walker D. Caring for Our Aging Population and Addressing Alternate Level of Care, Report Submitted to the Minister of Health and Long-Term Care, 2011 Dementia Evidence Brief, Alzheimer Society of York Region, July

17 ACKNOWLEGEMENTS This document was prepared with the generous contributions of Philip M. Caffery, PhD, Frank Molnar, MSc MDCM FRCPC and Andrea Ubell, MSW RSW The Alzheimer Society of York Region acknowledges the generous support of the Alzheimer Society of Ontario in the preparation of this Evidence Brief Assisted by an unrestricted grant from Pfizer Canada Contact Information: Loren Freid, Chief Executive Officer Alzheimer Society of York Region T: (Newmarket, Ontario) E: Dementia Evidence Brief, Alzheimer Society of York Region, July

18 APPENDIX I: The Effects of Dementia Across Ontario s and The Central LHIN s Health-Care Systems Dementia is a core issue impacting Ontario s health & social system As the Baby Boomer population ages, the number of seniors with dementia is expected to increase dramatically. Nearly 200,000 Ontarians over the age of 65 or one out of ten are now living with this disease, an increase of 16% over the past four years. By 2020, close to one quarter of a million seniors in Ontario will be living with dementia. 27 Figure 3. The effects across Ontario s health-care system Increases in dementia prevalence will vary among different regions in Ontario depending on the demographics of its population. As age is a primary risk factor for dementia, 28 those regions expecting substantial increases in the number of people aged 80 and above will experience the highest growth in dementia prevalence. 29 Figure 4. Dementia Evidence Brief, Alzheimer Society of York Region, July

19 Today, close to 23,300 people over the age of 65 in the Central LHIN region are living with dementia. Between 2012 and 2020, the total number of seniors with dementia in the region is expected to increase by 43% to more than 33,000 people. Increases in the number of people with dementia will intensify already existing strains on community care resources, emergency departments (ED) and acute care hospitals. Figure 5. Dementia Evidence Brief, Alzheimer Society of York Region, July

20 APPENDIX II: Dementia Projections by LHIN Regions 30 LHIN Region %Increase % Increase Erie St. Clair 10,640 11,960 13,260 12% 25% South West 16,020 18,050 20,170 13% 26% Waterloo Wellington 10,110 11,780 13,570 17% 34% Hamilton Niagara Haldimand Brant 25,090 28,300 31,460 13% 25% Central West 7,950 9,880 12,060 24% 52% Mississauga Halton 13,340 16,210 19,350 22% 45% Toronto Central 17,550 19,010 20,100 8% 15% Central 23,320 28,220 33,330 21% 43% Central East 24,590 28,590 32,740 16% 33% South East 9,000 10,290 11,600 14% 29% Champlain 18,360 21,000 23,950 14% 30% North Simcoe Muskoka 7,570 8,880 10,340 17% 37% North East 9,710 11,010 12,320 13% 27% North West 3,850 4,220 4,600 10% 19% Dementia Evidence Brief, Alzheimer Society of York Region, July