In their own voices: Guiding Principles and Strategies for Change Identified by and for Caregivers in Ontario. Stage 3:Working Focus Group

Transcription

1 Ontario Dementia Caregiver Needs Project Principal Investigators: Bryan Smale, Ph.D. Sherry L. Dupuis, Ph.D. Stage 3:Working Focus Group In their own voices: Guiding Principles and Strategies for Change Identified by and for Caregivers in Ontario

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3 In Their Own Voices: Guiding Principles & Strategies for Change Identified by and for Caregivers in Ontario Stage 3: Working Focus Group Bryan Smale, Ph.D. Sherry L. Dupuis, Ph.D. Murray Alzheimer Research and Education Program University of Waterloo MAREP 2004

4 Acknowledgements Support was provided for this study from Ontario s Strategy for Alzheimer Disease and Related Dementias (Initiative #6 Research on Caregiver Needs), jointly supported by the Ontario Seniors Secretariat and the Ministry of Health and Long-Term Care. We would like to thank, for their contributions, Cathy Conway, Associate Director for Education and Administration, Murray Alzheimer Research and Education Programme; Tim Epp, Post-Doctoral Fellow, Murray Alzheimer Research and Education Programme; Lisa Loiselle, Research Associate, Murray Alzheimer Research and Education Programme; and the many graduate research assistants who provided invaluable help at various points throughout the research process: Kyle Whitfield, Sarah James, Jennifer Munro, Fern Delamere, Heather Slade, Peter Morden, Harvey Lemelin, Jessica Luh, Jennifer Gillies, Linda Caissie, Felice Yuen, Christine Buzinde, David Clark, and most especially, Elaine Wiersma.

5 Table of Contents Prologue...iii BACKGROUND TO THE RESEARCH STUDY... 1 OVERALL STRUCTURE OF THE RESEARCH PROCESS... 2 THE THREE STAGES OF THE RESEARCH PROCESS... 2 Stage One of the Study: A Profile of Dementia Caregivers in Ontario... 2 Source of Data and Sampling... 4 The Questionnaire...5 Stage Two of the Study: Dementia Caregivers Identify the Issues... 6 Selection of Sites for the Focus Groups... 6 Selection of Focus Group Participants... 6 Focus Group Procedures... 8 Stage Three of the Study: Guiding Principles and Strategies for Change Identified by and for Caregivers in Ontario... 9 Working Focus Group Participants... 9 The Process IN THEIR OWN VOICES: GUIDING PRINCIPLES AND STRATEGIES FOR CHANGE IDENTIFIED BY AND FOR CAREGIVERS IN ONTARIO INTRODUCTION SYSTEMIC ISSUES Principle Principle HUMAN RESOURCE ISSUES Principle Principle CAREGIVER WELL-BEING ISSUES Principle i

6 THE DEMENTIA SUPPORTIVE ENVIRONMENT FRAMEWORK REFERENCES List of Figures 1. The Research Process The Dementia Supportive Environment Framework ii

7 Prologue Stage Three of the Study: Guiding Principles and Strategies for Change Identified by and for Caregivers in Ontario This is the third in a series of three reports resulting from the Initiative (#6) of Ontario s Strategy for Alzheimer Disease and Related Dementias. Undertaken in partnership with the Alzheimer Society of Ontario, the Ontario Caregivers Association, and the Murray Alzheimer Research and Education Program at the University of Waterloo, this research project focused on the needs of caregivers of persons with Alzheimer Disease or a related dementia and community support services in Ontario. In each report, the three stage research process is described briefly before presenting the results of the stage with which the specific report is concerned. In this document, the principles and strategies for change emerging from the final, working focus group of caregivers, with the support of care providers, planners, and policy makers, are presented. iii

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9 Needs of Caregivers of Persons with Alzheimer Disease or a Related Dementia and Community Support Services in Ontario BACKGROUND TO THE RESEARCH STUDY Approximately nine per cent of all people 65 years of age and older have some form of dementia; in fact, over 364,000 Canadians have been diagnosed with Alzheimer Disease (AD) and related dementias, of which almost 248,000 are women and 116,000 are men (Alzheimer Society of Canada, 2001). With the growing population of older adults, it is estimated that the prevalence of dementia will increase dramatically over the next several years. In fact, according to the Canadian Study of Health and Aging (2000), an estimated 60,150 new cases of dementia emerge each year. Dementia is also age-related. In Canada, only 2.4 per cent of those aged 65 to 74 have an illness causing dementia, but this figure rises to 34.5 per cent among those 85 years and older. Given that the fastest growing segment of the population is the oldest old (i.e., those 85 years of age and older), the incidence of dementia is predicted to increase substantially. By the year 2030, three quarters of a million cases of dementia are expected in Canada an increase of 300 per cent over present figures while the population will have only increased by an estimated 40 per cent. Persons with dementia experience devastating consequences over the disease process. The illnesses that cause dementia, however, also have detrimental impacts on the individuals closest to those persons with dementia, especially their caregivers and family members. In fact, caring for a person with dementia can be one of the most difficult, frustrating, and distressing of all caregiving roles. That experience becomes even more distressing as caregivers watch the gradual deterioration and psychological loss of those with the disease. With persons with dementia now surviving an average of nine years, they will require ongoing support either from home or within a long-term care setting. The Canadian Study of Health and Aging in 1994 suggested that approximately 50% of persons with dementia in Canada live in the community, with almost all being cared for by family or friends (94%). Coupled with the significant increase in the incidence of dementia, changes in the health care system despite increased investment in long-term care beds continue to result, in some cases, in longer waiting lists for certain community support services as well as long-term care beds. 1 This means that even more persons with dementia will be cared for in the community, thereby placing an overwhelming practical and emotional strain on caregivers and their families, as well as further taxing an already limited community support services system. 2 1 Sanmartin, C., Houle, C., Tremblay, S., & Berthelot, J-M. (2002). Changes in unmet health care needs. Health Reports, 13(3), Parent, K., & Anderson, M. (2001). Home care by default, not by design. CARP s Report Card on Home Care in Canada Toronto: CARP.

10 2 In Their Own Voices At present, a comprehensive portrait of caregivers of persons with dementia in Ontario is notably lacking in the research. In particular, their needs and experiences as the demands of their caregiving involvement increases with the progression of the care receiver s disease are not well understood at all. If caregivers are increasingly expected to maintain their relative at home in the community as long as reasonably possible, then every effort must be made to understand their experiences, articulate their needs for community support services, and enable them to overcome whatever constraints may be present to gaining access to those services. Indeed, learning directly from caregivers about how community support services should be structured, how and when they should be offered, and if new types of services are needed is a necessary first step towards developing appropriate strategies to address their needs. We must be willing to change existing policy and practices, and to develop innovative approaches to the provision of community support services that are truly sustainable, flexible, portable, and responsive to individual caregivers needs. OVERALL STRUCTURE OF THE RESEARCH PROCESS The research component is the second phase of Initiative 6 of Ontario s Strategy for Alzheimer Disease and Related Dementias and sought to identify the needs and issues of community-based caregivers who are caring for persons with Alzheimer Disease or a related dementia, and in particular, their use of and perceptions of formal community support services. In the first stage of the research study, a broadly based survey of community-based caregivers across Ontario was undertaken. In the second stage, a series of focus groups across Ontario with caregivers and care providers were conducted, which explored the issues and concerns raised by caregivers in the survey in greater detail. Finally, a large working focus group comprised of caregivers, care providers, policy makers, decision-makers, and health professionals was organised with the expressed purpose of developing fundamental principles and specific strategies for change to help overcome the issues and difficulties faced by caregivers in Ontario. This final stage of the research process provided caregivers, following their review of the results of the first two stages, an opportunity to indicate in their own voices where priorities for change should be placed. Figure 1 provides a visual overview of the entire research process, the details of which are described in the following sections. THE THREE STAGES OF THE RESEARCH PROCESS Stage One of the Study: A Profile of Dementia Caregivers in Ontario The primary purpose of the first stage of the study was to gather information from caregivers of persons with Alzheimer Disease or a related dementia concerning: (a) the nature of their caregiving careers and the specific activities in which they are engaged; (b) their awareness, use of, and satisfaction with community support services, as well as the constraints

11 Guiding Principles and Strategies for Change Identified by and for Caregivers 3 July- Sept April/May 2002 Sept Area 1: Northern Area 2: Central CG CP CG CP Figure 1: The Research Process Phase 1: Province-Wide Survey (n=2,244) Community service use, barriers, needs, and caregiver profile (burden, stress, coping) Phase 2: 14 Regional Focus Groups (142 total participants) Community service use, barriers, and needs Area 3: South East Area 4: South Central Area 5: South West Area 6: Large urban Area 7: Rural CG CP CG CP CG CP CG CP CG CP Phase 3: Working Focus Group 43 CGs + CPs CG = caregivers CP = care providers

12 4 In Their Own Voices they face in accessing them; (c) the impacts of caregiving on them and their families; and (d) what informal resources and capabilities they bring to the demands of caregiving. In particular, this stage of the study provided basic data in the following areas: 1. a comprehensive profile of primary caregivers, including information on demographics of the caregivers and the person with Alzheimer Disease or a related dementia, and characteristics of their relationship; 2. the length and intensity of the caregivers careers, including information on: (a) the types of activities in which the caregivers are engaged in providing support; (b) the duration of the caregivers involvement in each of those activities; and (c) the nature and extent to which secondary caregivers provide support; 3. the extent to which the caregivers (a) make use of community support services, (b) perceive that these services provide help in their caregiving roles, and (c) perceive that the services are accessible to them (i.e., perceived constraints and other barriers) and are matched to their needs; 4. the types and extent of impacts from caregiving on the caregivers themselves, as well as their families, in terms of their: (a) social context and leisure lifestyle, (b) family life, (c) financial circumstances, (d) working lives, (e) relationship with the person with dementia, and (f) physical and mental health; and 5. the degree of burden that caregivers are under and their abilities to cope with it, including information on: (a) the demands (i.e., strains, pressures) placed upon them by caregiving, (b) sources and degrees of stress related to caregiving, and (c) types and use of coping capabilities and other resources caregivers draw upon to deal with the demands. Source of Data and Sampling The target population for the survey was informal community-based caregivers in Ontario of persons with Alzheimer Disease or a related dementia still living in the community or recently moved to a long-term care facility (i.e., within six months of receiving the questionnaire). Identifying a comprehensive and representative listing of individuals who qualified under this definition presented a challenge due to the lack of an appropriate sampling frame. Therefore, the process by which the sample was selected was based upon the principle of ensuring a representative cross-section of caregivers from across Ontario while adhering as closely as possible to the criteria in the definition of the target population. The sample for this study was drawn from a variety of sources. At a first level of accessing caregivers, questionnaires were distributed to members and users of services of selected agencies across Ontario. Overall, almost 100 individual agencies around the province

13 Guiding Principles and Strategies for Change Identified by and for Caregivers 5 agreed to participate in the study and distributed the questionnaire on our behalf to individual caregivers who qualified according to the definition above. They included: the 39 local Chapters of the Alzheimer Society of Ontario; the Caregivers Association of Ontario; and key agencies providing services and programmes to caregivers across the province, such as Day Away Programmes, Visiting Homemakers, Red Cross, VON, and so on. In addition, over 60 of the larger long-term care facilities in Ontario were contacted and asked to distribute questionnaires to caregivers who had recently moved the person with dementia in to the facility (i.e., within the last six months when we contacted them). Caregivers contacted in this fashion were asked to reflect on their recent caring activities and experiences while the person with dementia was still living in the community. Further, the survey was promoted via case managers working with Ontario s Community Care Access Centres (CCACs) as well as through local media outlets (i.e., newspaper, radio) to solicit participation from caregivers who might not otherwise have been contacted by means of one of the vehicles noted. They were instructed to contact their local Chapter of the Alzheimer Society in order to receive a copy of the questionnaire. Overall, approximately 11,000 questionnaires were delivered to these agencies and organisations, as well as mailed directly to caregivers who contacted a local Chapter, or handdelivered by individuals visiting caregivers as part of their responsibilities for an agency (e.g., Visiting Homemakers, VON). The Questionnaire The questionnaire developed for the survey was designed to gather comprehensive data pertaining to the objectives listed earlier. Whenever possible, existing indicators, scales, and indices were adapted to measure key aspects of the caregivers involvement in providing care, their perceptions of those involvements, and the outcomes of their experiences. The questionnaire covers eight categories of information, each reflective of the study s objectives: Section A. Caregivers and Care Receivers Characteristics Section B. Caregiving Activities and Experience Section C. Use of Formal and Informal Support Services Section D. Caregiving Stressors Section E. Impacts of Caregiving Section F. Personal Coping Resources Section G. Caregivers Health and Well-Being Section H. Caregivers Characteristics Drafts of the questionnaire were reviewed by the project partners and then pilot tested with several caregivers for understanding, flow, presentation, and relevancy of items. In addition, participants in the pilot tests were asked to provide feedback on overall design and

14 6 In Their Own Voices to comment on the general ease with which respondents would be able to complete the questionnaire. This process helped to refine the questionnaire and while some individuals felt it was lengthy, they all indicated that the information resulting would be extremely valuable. Both French and English versions of the questionnaire were created, and participation was received from individuals in both official languages. Of the 11,000 questionnaires made available, approximately 9,300 of them were estimated to have reached community-based caregivers across Ontario. Of these, a total of 2,244 questionnaires were returned completed and in usable form, representing a 24.1% response rate. This makes the sample derived from the survey stage of the research project one of if not the largest sample of caregivers ever assembled in Canada. Stage Two of the Study: Dementia Caregivers Identify the Issues The primary purpose of the second stage of the study was to explore in greater detail the experiences and concerns of both caregivers and care providers associated with the use of and access to community support services. A series of focus groups were conducted around Ontario as a means to gain a deeper and more comprehensive understanding of the issues and needs related to community support services for caregivers of persons with dementia Selection of Sites for the Focus Groups A total of 14 focus groups (i.e., seven with caregivers and seven with care providers) were conducted across the province. Seven sites for the focus groups were chosen based primarily on the following criteria: 1. to include diverse caregiver and care provider perspectives; 2. to ensure adequate regional coverage from all regions of the province; 3. to include rural, mid-sized, and urban environments; and 4. to include regions where there had been a high response to the survey. The seven sites chosen included Northern Ontario, Central Ontario, South Central Ontario, South Eastern Ontario, South Western Ontario, a large urban centre, and a predominantly rural region of the province. Two focus groups one exclusively with caregivers and one exclusively with care providers were conducted in each region. Selection of Focus Group Participants The Alzheimer Society chapters located in the regions chosen for the focus groups, in coordination with research assistants involved in the project, were charged with the responsibility for organising the focus groups in their regions. As well as making the local arrangements for the focus groups, the chapters were asked to identify participants that

15 Guiding Principles and Strategies for Change Identified by and for Caregivers 7 represented the general characteristics of caregivers and care providers respectively in their communities. The caregiver focus groups included individuals who were: primarily caregivers providing care for a person with dementia living in the community; however, a few caregivers who had recently moved the person with dementia into a long-term care facility and were able to speak to the issues related to needed community support services also participated; spouses, adult children, other family caregivers, and in some instances friends providing care for a person with dementia; both male and female caregivers; caregivers who had not used community support services as well as those who had used such services; and caregivers who represented any other features that were characteristic of that area. The care provider focus groups included individuals in the community who were currently providing services and/or programmes for persons with dementia. A broad range of care providers participated in the focus groups including: representatives from Community Care Access Centres (CCACs) (e.g., case managers); staff working at placement coordination centres; management staff at day away programmes or other respite programmes; coordinators of caregiver support and/or educational programmes; managers of home health care and/or homemaker services; managers of other community support programmes such as Meals on Wheels and Friendly Visitor Programmes; long-term care policy makers and/or planners in the community; and other representatives of agencies or organisations specific to a region who could comment on the issues related to community support services from a provider perspective. Even though one of the seven sites was selected expressly to include a predominantly rural population, the chapters in the other six regions were asked, whenever possible, to include caregivers who could discuss issues related to living in the more rural areas of the

16 8 In Their Own Voices region and to the unique challenges that those circumstances created for them in their caring for a person with dementia. Focus Group Procedures As noted, all 14 focus groups were guided primarily by the issues, needs, and questions identified from the survey results undertaken in the first stage of the project and were designed to gain a deeper and more comprehensive understanding of the issues and needs related to community support services for caregivers of persons with dementia. More specifically, the focus groups centred around the following key questions: 1. Our preliminary results suggest that generally less than half of caregivers are using formal community support services why do you think this is? 2. Our preliminary findings also suggest that caregivers who are currently using community support services are quite satisfied with them. However, caregivers who are not using these services feel that they are not at all helpful to them. Why do you think these services are not seen as very helpful to these caregivers? 3. What needs to change with the existing formal community support services to make them better at meeting the needs of caregivers who are caring for persons with dementia living in the community? 4. Thinking about the whole community support system that is now in place, what services or other supports are still missing for caregivers who are caring for persons with dementia in the community? In other words, what is currently not offered that should be that would provide better support to caregivers in their caregiving roles? 5. If we could start from scratch and design a whole new approach to supporting caregivers of persons with dementia living in the community, what do you think this new model of community support for caregivers should look like? What programmes, services, and/or supports would be critical in the new model? How would these programmes, services, and/or supports operate? What other elements of the model would be important to include? If we were to implement this new model, what aspects of the model would have the highest priority?

17 Guiding Principles and Strategies for Change Identified by and for Caregivers 9 These questions provided the backdrop from which caregivers could describe and elaborate on their experiences of caring for a relative or friend with dementia and from which care providers could identify and explain challenges they faced in their attempts to support caregivers in their caregiving roles. In order to ensure consistency across the focus groups, a trained focus group facilitator and a recorder conducted all of the 14 focus groups. The focus groups lasted, on average, two hours in duration. All focus groups were audio-taped using a multi-microphone, four track Dictaphone machine and were transcribed verbatim. At the end of each focus group, participants were provided with a comment form containing the five questions used to guide the focus group with space in which they could provide additional insights on any or all of the questions discussed. A stamped, self-addressed envelope was provided in which they could then return the form if they chose. This step provided participants with another opportunity to share their experiences and identify other issues, as well as to provide further information that might not have arisen during the focus groups. The focus groups ranged from 8 to 15 participants, with a total of 68 caregivers and 74 care providers participating at the seven sites. Consequently, a total of 142 participants shared their experiences and contributed their voices to this stage of the research study. In addition, 22 of these participants took the opportunity to return the form distributed at the focus groups and elaborate on their experiences with additional comments. Stage Three of the Study: Guiding Principles and Strategies for Change Identified by and for Caregivers in Ontario The primary purpose of the third stage of the study was to develop specific recommendations and strategies for change based on the issues identified by caregivers in the first stage (i.e., the comprehensive, province-wide survey of caregivers of persons with dementia) and elaborated upon in the second stage (i.e., a series of 14 focus groups conducted with caregivers of persons with dementia and care providers in seven different regions across the province). Rather than attempting to derive recommendations and specific strategies independent of those individuals most affected, this task was turned over to caregivers themselves, thereby giving voice to their ideas and priorities in bringing about change in the way in which community support services are organised and delivered. Indeed, the culmination of the study at this third stage resulted in the participating caregivers, and supported by care providers, offering a number of guiding principles for change along with specific strategies to help bring about that change. Working Focus Group Participants In September 2002, 20 caregivers and 23 care providers, planners, and policy makers from across Ontario were brought together for a one-day, working focus group meeting. The participants involved in this meeting came from a larger group of individuals nominated by

18 10 In Their Own Voices the 39 Alzheimer Society chapters in Ontario and by key agencies and organisations that provide support and/or are involved in the direct provision of community support and health care services for persons with dementia and their caregivers in Ontario. The caregivers who were ultimately invited to participate in the working focus group meeting represented the different regions of the province and many different caregiver characteristics and experiences. The Ontario communities represented by the caregivers were: Brampton Brantford Burks Falls Cambridge Elliott Lake Goderich Kingston London Orillia Ottawa Palgrave Peterborough Porcupine Port Dover St. Catharines St. Thomas Toronto Val Caron Waterloo Whitby The care providers invited to the working focus group also represented the different regions of the province and had many different responsibilities for planning, decision-making, policy development, and direct provision of support services to caregivers. The organisations represented at the working focus group included: The Process Ontario District Health Councils Community Care Access Centres (CCACs) Psychogeriatric resources consultants and physicians Ontario Home Health Care Providers Association Ontario Community Support Association Ontario Long-Term Care Association Ontario Association of Non-Profit Homes and Services for Seniors Ontario Hospital Association The Caregiver Network Caregivers Association of Ontario Ministry of Health and Long-Term Care Ontario Seniors Secretariat Ontario Coalition for Senior Citizens Organisations Council on Aging CARP Canadians Association for the FiftyPlus In preparation for the working focus group meeting, participants were sent three documents providing background on the earlier stages of the research initiative of Ontario s Strategy for Alzheimer Disease and Related Dementias. The first document was a summary of the most salient points arising from a comprehensive review of the literature on caregiving roles and experiences. This literature review provided the context upon which the research project was based. The second document provided participants with a brief overview of the research project as well as selected results from the survey of caregivers of persons with dementia completed in the first stage of the project. This document included a profile of caregivers of persons with Alzheimer Disease or a related dementia and the types of caregiving activities in which they engage, as well as the community support services they use and their perceptions of these services. The third and final document provided the participants

19 Guiding Principles and Strategies for Change Identified by and for Caregivers 11 with a summary of the key themes and issues related to formal support for caregivers that were identified in the 14 focus groups conducted in phase two of the project. These themes were the primary focus of the working focus group meeting and centred around: 1. the need for new or additional services, 2. limitations of current service provision, 3. alternative approaches to service provision, 4. increased education and awareness, and 5. caregiver well-being and support. Working in five smaller groups of eight or nine individuals organised around these initial themes and with a trained facilitator and recorder, caregivers of persons with dementia, supported by the care providers, planners, and policy makers, identified a number of recommendations and strategies for change they felt needed to be implemented in order to meet the needs of all persons with dementia and their caregivers. The ultimate goal of these recommendations and strategies was to ensure that all persons with dementia and their caregivers had the supports necessary to maintain quality of life throughout the progression of the disease. A 21-page summary outlining the specific recommendations and strategies identified by each of the five smaller working groups was prepared directly following the meeting and mailed to all the individuals who had participated in the working focus group meeting. They were asked to respond not only to the recommendations and strategies developed by their own group, but also to those developed by the other four working groups and to provide any further feedback or suggestions they felt were necessary to ensure the document accurately reflected the issues and solutions identified by caregivers. Those participants who did not return feedback within three weeks of receiving the summary were contacted by telephone to ensure they had received the document and to obtain any additional feedback or suggestions those participants might have. A total of 29 participants returned the summary document with their comments, which almost universally verified the accuracy and comprehensiveness of the working focus group outcomes.

20 12 In Their Own Voices IN THEIR OWN VOICES: GUIDING PRINCIPLES AND STRATEGIES FOR CHANGE IDENTIFIED BY AND FOR CAREGIVERS IN ONTARIO INTRODUCTION The recommendations and strategies for change prepared by caregivers, supported by care providers, planners, and policy makers, and the additional feedback received from participants at the working focus group meeting served as the basis for this document. An analysis of the recommendations and strategies emerging from the working focus group revealed five fundamental principles valued by caregivers, principles that they feel need to be adopted in Ontario in order for the needs of persons with dementia and their caregivers to be adequately met. These principles centre around three key areas: o Systemic Issues developing a system of community support systems that is available to meet the individualised needs of all persons with dementia and their caregivers across the province; o Human Resource Issues developing a human resource base that has dementia-specific training to adequately meet the needs of persons with dementia and their caregivers and ultimately provide quality dementia care; and o Caregiver Well-Being Issues ensuring that caregivers of persons with dementia are acknowledged and supported for the work they do. Thirty-seven specific strategies were identified that serve as the means to realise the positive outcomes associated with the five principles. The principles and their related strategies are outlined in the remainder of this document.

21 Guiding Principles and Strategies for Change Identified by and for Caregivers 13 SYSTEMIC ISSUES Principle 1: A comprehensive and integrated community support system must be available to meet the needs of all caregivers and all people with dementia A common theme highlighted in both the focus groups conducted during Stage 2 of the research project and the working focus group meeting was the fragmentation of existing services and the inconsistencies perceived in the availability and accessibility of community support and health services provided across the province. As a consequence, caregivers in Ontario emphasised the need for the integration of community support and health care services. This involves finding better ways for agencies and organisations to share information and making an integrated system more accessible and easier to navigate for caregivers and persons with dementia. It also means providing a system of programmes and services that would be accessible and available to all persons with dementia and their caregivers. In order to achieve this principle, the following strategies were developed: Develop a core set of support and health care services that are available and accessible to all caregivers and all people with dementia regardless of geographical location, throughout the progression of the disease Integrate all community support and health care services in order to provide easier access to information and needed services and continuity throughout the progression of the disease The first action that needs to take place is the merging of all the different agencies that provide all these services. Simply put, it is virtually impossible to understand all the bureaucracy. There are too many agencies involved and as is typically the case, the right hand doesn t know what the left hand is doing. There s great deal of confusion and mis-information on services offered and who is eligible for what. It s a challenge to see beyond the bureaucracy. Son, caring for his mother Implement a system that provides one stop information, referral, and access to all community support and health care services required by people with dementia and their caregivers Facilitate and enhance routine and regular communication between all community support and health care providers on available resources and how to access needed services Develop common standardised assessment tools for both persons with dementia and their caregivers and devise a method that protects the

22 14 In Their Own Voices privacy of personal and health information, while sharing assessment information among all community support and health care providers, in order to reduce the number of assessments conducted and provide uniform services/resources across the province Principle 2: The community support system must be flexible and responsive to the changing individualised needs (i.e., physical, emotional, social, cultural) of both persons with dementia and their caregivers, throughout the disease progression Generally, Ontario caregivers find the current approach to community support and health care service delivery inflexible and focused more on what is available and the amount of service allowed under current regulations rather than on the specific needs of individual persons with dementia and their caregivers. This approach is particularly problematic given Develop programs that suit each individual caregiver and each individual care receiver s needs. Listen to the specific needs that the caregiver has for his or her care receiver and send a trained respite person who can handle the situation and develop a specific program for the needs of both parties involved. All caregivers and care receivers come from different backgrounds, have different personalities, and are at different stages of the disease in their lives. Daughter, caring for her mother the changing needs of persons with dementia as the disease progresses and the varying abilities of caregivers to cope in their roles depending on individual circumstances. In order to provide a system of support that is flexible and responsive to the changing needs of persons with dementia and their caregivers, the following strategies for change are needed: Make core services available on a 7-day a week, 24-hour basis where required to meet the needs of persons with dementia and their caregivers Conduct routine, regular assessments of both persons with dementia and their caregivers to determine current and changing needs beginning early in the disease process Make self-directed care options available in order for caregivers to manage their own support needs Maintain a continuum of community support and health care services that includes in-home, community, and facility-based options Respect and support the choice of the person with dementia and the caregiver to remain in the home by providing adequate in-home support and community-based services, including paid in-home respite when needed,

23 Guiding Principles and Strategies for Change Identified by and for Caregivers 15 adequate periods of regularly scheduled and emergency and crisis respite, and the provision of health care and other support services in the home Respect the choice to be admitted to a long-term care facility when the person with dementia and the caregiver s quality of life can no longer be maintained in the home Make available a consistent care facilitator for caregivers and persons with dementia throughout the caregiving career who would do the initial assessment of persons with dementia and their caregivers, monitor the changing needs of both clients, develop and modify care plans in consultation with persons with dementia and their caregivers, and help both clients access all needed services/resources Develop community support and health care services that are sensitive to and meet the cultural and linguistic needs of caregivers and persons with dementia Provide a community support and health care system that offers choice regarding when services are provided Provide continuity of services from trained care providers who know and understand the person with dementia and the caregiver Home care programme regulations are too restrictive. Our needs do not fit their programmes. We need help around the house, but they want to spend their time offering respite. Husband Allow for flexibility in the maximum service allowed, particularly for caregivers of individuals with complex care needs and for high-risk clients and caregivers HUMAN RESOURCE ISSUES Principle 3: All people providing care to persons with dementia must have specific and standardised dementia-related knowledge and skills A major concern of caregivers of persons with dementia is the lack of dementiarelated knowledge and skills that care providers working with persons with dementia and their

24 16 Staff are poorly trained to deal with dementia in its many forms. Daughter, caring for father-in-law In Their Own Voices caregivers possess. In order to provide quality dementia care and to make appropriate referrals, physicians and care providers need a basic understanding of dementia. There also is a need for individuals who have more specialized training in dementia in Ontario. Caregivers recommend the following strategies to address this principle concerning these human resource issues: Identify core competencies needed by physicians and care providers working in dementia care that emphasise the complexity and changing nature of the disease process Institute routine re-assessment of the core competencies required by physicians and care providers working with people with dementia Develop a core minimum curriculum on dementia and dementia care at the college or university level based on the identified core competencies Develop standardised training programmes for all home support workers based on the identified core competencies Encourage and support employers to provide their staff with access to required standardised training programmes and professional development Routine professional development options must be made available to care providers to ensure that the dementia-specific knowledge and skills of care providers are current Provide specialised education and training for physicians and other health care professionals (e.g., nurses working in acute care, physiotherapists, optometrists) on dementia and dementia care Increase standardised education and training on dementia and dementia care for all volunteers working with people with dementia and their caregivers Principle 4: An increased and stable workforce must be in place to provide continuity in dementia care

25 Guiding Principles and Strategies for Change Identified by and for Caregivers 17 A common human resource issue identified by Ontario caregivers was the lack of staff to provide community support and health care services and the difficulties retaining those staff often due to difficult working conditions (e.g., large and unmanageable caseloads, poor wages for in-home support workers). Caregivers further emphasised the need for continuity of care providers throughout the progression of the disease and the importance of having access to specialized staff and services no matter where one lived in Ontario. Four strategies are recommended to establish an increased and stable workforce in dementia in Ontario: Find effective recruitment and retention options in order to reduce staff turnover and to attract people to a career working with people affected by dementia Provide a fair, competitive, and uniform pay system, including benefits and working conditions, for care providers Establish manageable caseloads for care providers Our homemaker, who assists in bathing the care receiver, is very good. It is very helpful to have the same person all the time. It is better for the care receiver who becomes familiar with the new face and that makes it more comfortable. It is better for the caregivers who get to know the homemaker and also feel more comfortable having this person in their house. To get good homemakers and keep them they should be paid more. Husband Provide access to specialised services (e.g., psychogeriatric services, occupational therapy, physical therapy) in all communities regardless of geographic location CAREGIVER WELL-BEING ISSUES Principle 5: Greater acknowledgement, recognition, and support must be given for the work that caregivers do Ontario caregivers feel that the work that they do is undervalued, particularly because of: (1) the lack of awareness in the general public of the responsibility, commitment, and demands of the caregiving role, and (2) the lack of compensation and supports available to assist them in their roles. Many caregivers also feel unprepared when they are faced with taking on the role, especially in terms of their understanding of dementia, their awareness of the supports and programmes available to them and Taking care of a person with Alzheimer s is very difficult. It is a 24-hour job I find it very hard to give my family any time. I need more help. It is very difficult to find it. Six hours of homecare is not enough. Daughter, caring for father

26 18 In Their Own Voices how they can access those services, and their understanding of positive strategies they can use to help them cope in their roles throughout the progression of the disease. In order to help contribute to their well-being, nine strategies were identified by caregivers: Promote greater public awareness of the caregiving role through the development of a public awareness campaign that demonstrates the value of caregiving for a person with dementia and how others can assist caregivers in their role Provide appropriate and adequate compensation options for caregivers, particularly for those who leave or reduce employment to provide care (e.g., caregiver tax credit, subsidies for caregivers, direct payment for care provided) Provide job and pension protection and caregiving leave policies in the workplace for caregivers who must stop working or reduce their hours of employment to provide care to a person with dementia Develop a caregiver mentor system to support both formal and informal caregivers I would have liked to be able to continue to care for my mother in my home. I have 3 children who are grown who still live at home so I am afraid to quit working full time with no income coming in. There should be more support for people who want to stay home and care for their family member when she has a very limited time to live. There is not enough support to keep her at home I feel cheated out of being able to care for my mom and enjoying her being with me as long as possible and making her last days at home comfortable with her family where she belongs!! Daughter, caring for mother Develop and implement specific services geared to increasing caregivers coping abilities and capacities across the caregiving career, and ultimately, to enhancing the overall health and well-being of caregivers (e.g., stress management, leisure education) Include the voices of both caregivers and persons with dementia in care planning and the creation of policies Develop a comprehensive resource in all communities, which lists all support services, programmes, and other resources available to caregivers and persons with dementia, and provides clear instructions on how to access those services Provide education and training opportunities on dementia and dementia care to informal caregivers across the caregiving career to help them understand the disease process and appropriate interventions Provide support, including respite, to caregivers to enable them to attend education and training programmes throughout the caregiving career

27 Guiding Principles and Strategies for Change Identified by and for Caregivers 19 THE DEMENTIA SUPPORTIVE ENVIRONMENT FRAMEWORK The principles and strategies for change identified by and for caregivers suggest an alternative framework for dementia care in Ontario one that recognises and incorporates the knowledge-bases and expertise of caregivers of persons with dementia and of care providers, planners, and policy makers involved in dementia care. This alternative framework, what we call the Dementia Supportive Environment Framework, is based primarily on the guiding principles identified by the caregivers and professionals involved in the working focus group meeting. The Dementia Supportive Environment Framework draws on the work of a number of researchers working in the area of dementia care, chronic illness, and disability, such as Zarb and Oliver s (1993) supportive environment model, interactionist models of care as discussed by Clarke and Keady (1996), non-traditional models and normalization approaches as discussed by Robinson (1993, 1994), and the work by Adams and Clarke (1999), which focused on developing partnership models of dementia care. These models were chosen because they reflect similar perspectives and approaches to care as those identified in the principles developed in this study by caregivers and professionals. The essential components of the Dementia Supportive Environment Framework are presented in Figure 1. At the core of the framework is the ultimate goal of a supportive environment for caregivers the maintenance of family well-being in the dementia context. This component of the framework recognises that the primary objective in creating supporting environments is to support families as caregiving units. By focusing only on the person with dementia or on the caregiver, we ignore the fact that the family as a whole is affected in an illness experience and that it is also the primary context of care (Clarke & Keady, 1996; Davis, 1996; Robinson, 1994). The goal of health and community support services should be to help the family unit adjust and adapt to the situation, to support its members in functioning well, and to assist them in continuing to live in normalised ways despite dementia (Robinson, 1993). Hence, the family, rather than embracing an orientation toward servicing the illness, focuses on an orientation of getting on with life (Robinson, 1993). I have found by going through this that my husband, who is the son, closes up and it really effects our home and family life. It has been over 2 years and is such longterm mourning. Our daughter, who is 15, is very close to her grandfather and sees how everybody is so upset all the time. We travelled with my father-in-law and were very close to him. But life isn t the same anymore in our home. No freedom, always a commitment, all of the time. It really has torn our family apart. Daughter, caring for her father-in-law Five key components need to be addressed before family well-being can be achieved. The first component involves a comprehensive, integrated community support system built on real partnerships. This component recognises and respects the multiple and equally valuable knowledge bases needed for quality dementia care (Adams & Clarke, 1999). Therefore, it advocates the development of partnerships in care that allow for direct involvement in decision-making by persons with dementia, family caregivers, and professional care providers at all levels. This component emphasises that supporting families in the dementia context requires reciprocal, mutual, sharing, and collaborative relationships between all partners in dementia care throughout the progression of the disease (Adams & Clarke, 1999; Robinson, 1994). This approach to care allows for the development of a system

28 20 In Their Own Voices Comprehensive, Integrated Community Support System Built on Real Partnerships Flexible System Responsive to Changing Individualised Needs Within the Family Dementia-Related Knowledge and Skills for all Involved in Dementia Care Maintenance of Family Well-Being in the Dementia Context Increased, Stable Workforce to Provide Continuity in Dementia Care Acknowledgement, Recognition, and Support for Caregivers/Caregiving Units Figure 2: The Dementia Supportive Environment Framework

29 Guiding Principles and Strategies for Change Identified by and for Caregivers 21 of dementia care that is proactive rather than reactive and is better able to anticipate problems, issues, and challenges rather than simply responding when crises arise (Zarb & Oliver, 1993). Working together and continually sharing information ultimately leads to better access to needed resources and supports, and ensures that the needs of the caregiving family are met throughout the disease process. Our mother was widowed at 42 years of age with 4 daughters. There is an extremely close bond between us. Two sisters live far away and offer [whatever] financial and emotional support they can. When mother s disease progressed, the 4 of us subsidized a private room in the local nursing home to offer her some dignity. With no Alzheimer unit, she and others with dementia were often labelled difficult. The Alzheimer Support group helped us to cope, but the whole situation almost fractured our family unit it was so difficult. Daughter, caring for her mother The second component focuses on the development of a flexible system responsive to the changing, individualised needs within the family. This component recognises that dementia is context specific and that the timing and nature of changes can be difficult to predict (Clarke & Keady, 1996). This component also recognises that there are multiple realities in dementia care and that these realities change over the progression of the disease (Robinson, 1994). Consequently, each caregiving family will face many different demands and have many different needs, and these needs will change over the course of the disease. Given the specific circumstances and context at any given time, some caregiving families will be able to cope very well with the changes facing them whereas other families may not cope nearly as well when faced with similar circumstances. Some families will need specific resources and supports to deal with their unique challenges whereas others may require alternative resources and supports, or perhaps no support at all. The component calls for user-directed services and other creative approaches to care that respect and provide for the choices of caregiving families, and allows families to respond more quickly and more effectively to changing demands and needs (Robinson, 1994; Zarb & Oliver, 1993). It also emphasises the need for a continuum of care options in all communities. The third component of the framework focuses on the provision of dementia-related knowledge and skills for all involved in dementia care. Education and training specific to dementia recognises that the dementia context is unique from most other illness experiences. In order to effectively address the needs of caregiving families, all those working in dementia care, including the families themselves, need knowledge on various aspects of dementia and the development of skills in order to be more responsive to the unique situations and challenges faced in dementia care. This component highlights the importance of the identification of competencies needed in dementia care and places more emphasis on ensuring that educational and professional development opportunities are available and accessible to all partners in dementia care. The development of an increased, stable workforce to provide continuity in dementia care is the fourth component of the framework. This component recognises the importance of consistency in care providers to the family s sense of security and confidence in services (Zarb & Oliver, 1993). On-going relationships between professionals and families are regarded as an essential process in this component (Adams & Clarke, 1999; Robinson & Thorne, 1984); that is, truly collaborative relationships only develop over time. Finally, this component places value on the caring work performed by formal care providers. There is a

30 22 In Their Own Voices number of ways professional care providers can be more highly valued for the work they do, such as providing them with fair and competitive pay systems and enhanced working conditions. The final component of the Dementia Supportive Environment Framework involves the provision of acknowledgement, recognition and support for caregiving families and the valuable contribution they make to dementia care. This component acknowledges the family as expert in the dementia experience, and highlights the importance of hearing and understanding families knowledge bases and incorporating their voices in decision-making and the creation of care policies (Coates & Boore, 1995; Robinson, 1994). The component places particular importance on recognising and valuing the work families do in dementia care, especially through the provision of financial compensation for that caring work and the creation of workplace policies that better support and protect employed caregivers. This component also highlights the importance of the need for supportive services geared to increasing the coping capacities of caregiving families across the progression of the disease. All members of the family unit will need different supports over the course of the disease to help them deal with the changing circumstances of dementia. The caregivers who participated in the full-day focus I know myself, I would like to group meeting, working together with care providers, planners, be able to look after my and policy makers, developed a number of important strategies husband at home until the end. And to do that I need the help. that could make this framework a reality. As presented earlier in But I also have to look at it this document, the specific strategies provide much of the needed reasonably the help isn t direction for providing supportive environments for all those there and I have to look after involved in dementia care in Ontario. Partners involved in myself, too. So you can t win. dementia care likely will devise other creative and effective ways Wife to address various aspects of the Dementia Supportive Environment Framework. In the development of real partnerships in care, these new initiatives, through the development of improved communication strategies, hopefully will be shared among communities so that all those involved in dementia care in Ontario will grow and learn from one another. In doing so, we will be better able to address the needs of persons with dementia and their caregiving families, and ensure that all caregiving families can maintain their quality of life and function well despite the presence of dementia. To quote Clarke (1999, pp ): In seeking to find an effective model of working with both family carers and people with dementia it is necessary to move beyond the traditional dyads of health and social care relationships, and consider each individual as one of a number of partners involved in identifying and meeting care needs for the whole situation Hanson (1997) calls for a fluid participatory experience of analysis, diagnosis, and intervention which sees all parts, clinicians and families included, contributing to the whole process when working with people with dementia. To achieve this requires a commitment to appreciating and valuing other knowledge bases and to equipping ourselves to be able to access such knowledge when working with people with dementia and their families.

31 Guiding Principles and Strategies for Change Identified by and for Caregivers 23 REFERENCES Adams, T., & Clarke, C.L. (1999). Dementia care: Developing partnerships in practice. London, UK: Baillière Tindall. Canadian Study of Health and Aging. (1994). Patterns of caring for people with dementia in Canada. Canadian Journal of Aging, 13, Canadian Study of Health and Aging. (2000). The incidence of dementia in Canada. Neurology, 55, Clarke, C.L. (1999). Dementia care partnerships: Knowledge, ownership and exchange. In T. Adams & C. Clarke (Eds.), Dementia care: Developing partnerships in practice (pp. 5-35). London, England: Baillière Tindall. Clarke, C.L., & Keady, J. (1996). Researching dementia care and family caregiving: Extending ethical responsibilities. Health Care in Later Life, 1(2), Coates, V.E., & Boore, J.R.P. (1995). Self-management of chronic illness: Implications for nursing. International Journal of Nursing Studies, 32, Davis, L.L. (1996). Dementia caregiving studies: A typology for family interventions. Journal of Family Nursing, 2(1), Parent, K., & Anderson, M. (2001). Home care by default, not by design. CARP s Report Card on Home Care in Canada Toronto: CARP. Robinson, C.A. (1993). Managing life with a chronic condition: The story of normalization. Qualitative Health Research, 3(1), Robinson, C.A. (1994). Nursing interventions with families: A demand or an invitation to change? Journal of Advanced Nursing, 19, Robinson, C.A., & Thorne, S. (1984). Strengthening family interference. Journal of Advanced Nursing, 9, Sanmartin, C., Houle, C., Tremblay, S., & Berthelot, J-M. (2002). Changes in unmet health care needs. Health Reports, 13(3), Zarb, G., & Oliver, M. (1993). Ageing with a disability. London, UK: University of Greenwich.

32 For more information of this project and other research related to dementia care, visit:

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34 Association Design: Graphics, University of Waterloo Caregivers of Ontario