Société de gestion pour le soutien aux proches aidants, 400 de Maisonneuve Blvd. West, Suite 720, Montréal, Québec H3A 1L4 1

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1 Société de gestion pour le soutien aux proches aidants, 400 de Maisonneuve Blvd. West, Suite 720, Montréal, Québec H3A 1L4 1

2 Context and background During the public consultation in 2007 on the quality of life of seniors, many caregivers expressed the need for greater help and support in order to provide a loved one with better care. Further to the unanimous adoption of Bill 6 in October 2009, the Minister responsible for Seniors, with the financial contribution of Sojecci II Ltée (holding company established by Mr. André Chagnon), set up a $200 million fund over 10 years to provide support to caregivers of seniors. A management company named l Appui pour les proches aidants was formed in November Our mission To help support caregivers who provide unpaid in-home care and regular assistance to seniors with a significant or persistent disability that may compromise their ability to continue living at home. Our mandate L Appui pour les proches aidants (L Appui national) was set up to receive, manage and grant the funds from the Ministère de la Famille et des Aînés and Société de gestion Sojecci II Ltée in order to pursue the objectives set forth in Bill 6, an Act to Establish a Caregiver Support Fund. The primary goal of l Appui national is to mobilize the stakeholders concerned to help set up an Appui in every region of Quebec. In addition, l Appui national will develop strategies which include creating an Internet portal, setting up a caregiver information line, and forming a working committee on good practices for caregivers to seniors and a ministerial round table for caregivers to seniors. A regional Appui, constituted as a non-profit organization, is a group of key partners from the health care, associative and community sectors, and of caregivers to seniors who work together to develop best practices to meet the needs of the caregivers in their area. The task of a regional Appui is to support the deployment and financing of a range of information, training, psychological support and respite services offered by organizations in the community. In addition, it provides caregivers with a regional advice service that listens to, assesses and monitors their needs, and can refer them to relevant local services if required. Guy Lacoste Caregiver Société de gestion pour le soutien aux proches aidants, 400 de Maisonneuve Blvd. West, Suite 720, Montréal, Québec H3A 1L4 2

3 To fulfil its mandates, a regional Appui produces a profile of the situation of the caregivers in its region, then develops a strategic plan followed by annual action plans. It subsequently issues requests for proposals and analyses the projects proposed. These sustained services intended for caregivers to seniors will have the following characteristics: Customizable Provide for a service offering that is suited or can be tailored to the needs of caregivers to seniors and which can be of assistance at every stage of their caregiving journey. Proactive Involve reaching out proactively to caregivers of seniors, to raise their awareness and inform them every step of the way. Complementary Will not duplicate or even overlap with services already offered to caregivers. The services funded by the regional Appui must not replace the activities, projects and initiatives stemming from regular programs established or approved by the government. High impact Combine the growth, diversity and intensity of the services to obtain the maximum possible benefits for caregivers. Société de gestion pour le soutien aux proches aidants, 400 de Maisonneuve Blvd. West, Suite 720, Montréal, Québec H3A 1L4 3

4 Our vision Caregivers with a better quality of life. To accomplish its mission and vision, the Réseau des Appuis: Gives predominant consideration to the needs expressed by caregivers in defining the most appropriate support services for them. Contributes to the development of a support network in all regions of Quebec by engaging all persons and entities involved in improving the living conditions of caregivers to seniors. Encourages dialogue in order to share influential leadership and create a favourable environment for new services, practices and policies that can improve the living conditions of caregivers to seniors. A few statistics Québec's socio-demographic profile is changing, and this fact brings its own set of challenges. Indeed, according to a study on aging 1 published by the Institut de la statistique du Québec (ISQ) in 2012, the proportion of people in Quebec aged 65 and over more than doubled between 1971 and 2011 and their number was multiplied by three. By 2051, this proportion is expected to have risen from 16% to 28%. Among the senior population, the oldest age groups will experience the most significant growth compared to In this context of demographic aging, the question of "care giving" becomes a social issue. A few facts speak for themselves: In , according to the ISQ, 21% of people aged 65 and over needed help with carrying out their everyday activities; this rate increases to 60% for people aged 80 and over. In , according to the Canadian Community Health Survey Healthy Aging (CCHS), some 3.8 million Canadians aged 45 and over (35%) provided informal care to an elderly person with a short- or long-term health problem. Nearly three-quarters (73%) of those caregivers were between 45 and 64 years old, and one-quarter were themselves seniors. (Statistics Canada, 2012) In 2005, the Ministère de la Santé et des Services Sociaux (MSSS) estimated that families covered approximately 80% of the help and support needs of seniors with diminishing autonomy. In 2010, also according to the MSSS, the number of caregivers to seniors in Quebec who provided support for more than 5 hours a week was estimated at 300,000, of whom: 218,415 caregivers provided between 5 and 9 hours a week. 73,945 caregivers provided 20 hours or more a week. 1 Étude sur le vieillissement : réalités sociales, économiques et de santé (Study on aging: the social, economic and health care situation) Société de gestion pour le soutien aux proches aidants, 400 de Maisonneuve Blvd. West, Suite 720, Montréal, Québec H3A 1L4 4

5 A few observations made in the regional profiles: Caregivers have numerous problems reconciling their personal and professional lives with their tasks as caregivers. Caregivers generally experience the need to: Be informed of resources that can provide them with assistance and support. Have access to information throughout the various stages of the illness. Obtain support when they need it. Be empowered by their role and act as a partner in the caregiver-senior relationship. Be able to obtain quality respite at the appropriate times. Principles guiding the actions of the Réseau des Appuis A direct, significant and measurable effect on the quality of life of caregivers to seniors. Respect for regional differences as well as a sense of equity. A management style that promotes innovation focused on effective results. Continuity of long-term actions with caregivers and sustainability of structures, services and impacts. Ongoing collaboration and partnership with regional and local stakeholders. Coordination among regional stakeholders to ensure continuity of services. Ongoing developmental evaluation, both qualitative and quantitative, of effects and processes so as to constantly adjust actions as needed. Martine Molard Myrna Arteaga and Gisele Poirier Caregivers Société de gestion pour le soutien aux proches aidants, 400 de Maisonneuve Blvd. West, Suite 720, Montréal, Québec H3A 1L4 5

6 MAIN STRATEGY OPERATION PROCESS IMPACT ON THE QUALITY IMPACT ON THE QUALITY OF SERVICES OF LIFE OF CAREGIVERS Caregivers know about the services that are available Caregivers are informed and feel confident + Caregivers have a good quality of life Caregivers develop their knowledge, hone their skills and adopt behaviours + Caregivers have a sense of mental well-being Caregivers enjoy the support they need + Caregivers have some time for themselves Caregivers are temporarily relieved of their caregiving tasks Information Training Psychological support Respite Caregivers obtain the support and services they need Method of approach for welcoming caregivers, listening to their needs related to their role with the senior, and referring them to the services they need Setting up the caregiver helpline The service offering evolves according to caregiver needs and regional context Funding of services available to caregivers Setting up the regional Appuis Developing and maintaining the mobilization and involvement of regional and local stakeholders Applying caregiver-oriented guiding principles Information Referral Guidance Support Société de gestion pour le soutien aux proches aidants, 400 de Maisonneuve Blvd. West, Suite 720, Montréal, Québec H3A 1L4 6

7 Société de gestion pour le soutien aux proches aidants, 400 de Maisonneuve Blvd. West, Suite 720, Montréal, Québec H3A 1L4 7

8 Société de gestion pour le soutien aux proches aidants, 400 de Maisonneuve Blvd. West, Suite 720, Montréal, Québec H3A 1L4 8