Engaging People with Early Stage Alzheimer’s Disease in the Work of the Alzheimer Society — Study Report Summary
Earlier diagnosis is leading individuals with Alzheimer’s disease and related dementias (ADRD) to contact the Alzheimer Society for information and support, and to become involved in the organization. Experience is showing us that these individuals are capable of contributing in a meaningful way to our understanding of dementia, their needs, and required supports. The Alzheimer Society of Canada commissioned a study in 2006 to identify strategies to promote the active participation of people with early stage* dementia in the work of the Society, particularly policy, research and service delivery. The study was funded by Imagine Canada.
The study team gathered information from people with ADRD, Alzheimer Society staff and volunteers. Relevant literature was reviewed and key informants such as researchers, clinicians and other Alzheimer organization leaders were interviewed. The study team included consultants from the Developmental Consulting Program at Queen’s University, people with ADRD, and staff from the Alzheimer Society and other national voluntary organizations.
Benefits and Challenges to Participation of People with ADRD:
In the course of identifying strategies to promote engagement of people with ADRD in the work of the Society, factors were identified that influence individuals to volunteer or create barriers that may limit their participation.
Benefits: For People with the Disease
Volunteering can offer people with ADRD social interaction and outlets for their skills and experiences. It provides opportunities to influence policies and programs that are aimed at improving their quality of life and that of others. Involvement can enhance self-esteem of individuals with ADRD by offering them "active" outlets for self-advocacy as an alternative or complement to the "passive" role of a service recipient.
Benefits:
For the Alzheimer Society
Increased involvement will lead to a better understanding about how to meet the needs of people affected by Alzheimer’s disease and help strengthen the delivery of services to all users. The broader vision created by the involvement of people with ADRD will enhance the voice of the Alzheimer Society and assist with lobbying efforts.
Challenges: For People with the Disease
Practical barriers such as transportation costs, health factors that affect performance such as fatigue, and volume of reading required were viewed as challenges to involvement.
Challenges: For the Alzheimer Society
Historically, the Alzheimer Society has focused on support and education programs for caregivers. The increased involvement and support of people with ADRD represents a significant shift for the organization. Giving those with ADRD a stronger voice will require some changes in attitudes, systems and structures. It may also make it difficult for organizations to meet the needs of other stakeholders. Staff in particular, expressed concern about resources and funding that may be needed in order to support individuals. They also reported that they could benefit from information and training around handling issues of capacity and loss in the individuals they are supporting.
Findings and Recommendations:
There is an international trend toward inclusion of people with ADRD in volunteer and advocacy opportunities and Canada has helped to lead the way. Individuals with ADRD are active on boards and committees, act as spokespeople at local and international events, raise funds, and take on a variety of other volunteer tasks with the Society.
The study findings indicate that there is a value and benefit from inclusion, that there is wide-spread recognition of these benefits, and that staff and volunteers are willing to overcome challenges to increase involvement. The report provides a clear outline of the steps needed to increase the engagement of people with ADRD in the work of the Alzheimer Society.
Establishing Inclusion as a Priority: Five Steps
- Develop a Strategic Direction, Policy Statement and Goals
- Make the people served the primary focus in all Alzheimer Society decisions
- Ensure that people with ADRD have a voice and opportunities to be active in the organization
- Set a federation-wide policy on the importance of inclusion
- Establish achievable goals and a series of tactics that chapters can implement
- Evaluate progress
- Pursue Enhanced Funding
All participants acknowledge the additional staff time and resources required to facilitate increased involvement of those with ADRD. Additional funding will be necessary to make inclusion efforts effective.
- Provide Support and Training for Staff and Volunteers Education and support are required to help staff and volunteers adapt programs to increase inclusion, balance stakeholder programs, address issues of declining abilities, and how best to serve and support people with ADRD.
- Provide Information and Support for Consumers Alzheimer organizations must make their consumers aware of the opportunities for volunteer involvement by sharing information about opportunities. A personal invitation by staff is often successful. Staff must also follow up with practical support for volunteers.
- Enhanced Advocacy Efforts and Inclusion
Further work is required in lobbying the government for funding for more dementia specialists and in partnering with physicians and universities for the improved education for present and future physicians. The Alzheimer Society’s advocacy work will be enhanced and further validated by adding the voice and priorities of people with ADRD to this work.
Conclusion
Through a wide range of information-gathering, the report details the valuable contributions that people with ADRD can and are making to the Alzheimer Society. With the creation of a clear strategic direction and policy statements, the Society will continue to create opportunities for people to become full, active participants in the organization. Although challenges will accompany this new path, the Alzheimer Society is dedicated to finding the necessary solution.
It is hoped that the findings will be of interest to all Alzheimer organizations in Canada and to other charitable and nonprofit organizations that are concerned with advocacy, inclusion and empowerment.
* The term "early stage" means individuals of any age who have only mild impairment due to symptoms of Alzheimer’s disease.
For more information, download the full report.
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