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Changing Minds: Innovations in Dementia Care and Dementia-Friendly Communities 28 Nov - 03 Dec, 2017
SUSTAINABILITYChanging Minds: Innovations in Dementia Care and Dementia-Friendly Communities28 Nov - 03 Dec, 2017

    Session Overview

    Dementia has been identified as one of the most serious and growing health challenges for health care services, social care, and communities and families, especially in countries with ageing populations. The total global costs of dementia in 2015 were estimated to be nearly 1.1% of worldwide GDP.  Traditional health care models often fall short for people and families affected by dementia because of the complexity of the co-morbidities experienced in later life and because these models focus primarily on the physical health process and not on the full lived experience.  We need to develop new models of integrated care and community preparedness to meet this challenge.

    From their extensive observations of people living with dementia, Kitwood and Bredin identified four global constructs needed for well-being: (1) personal worth/self-esteem; (2) agency, the ability to control personal life in a meaningful way; 3) social confidence; and (4) hope. To achieve these goals, public engagement, education, and systematic community and organizational change, are required to reach beyond the healthcare system. One example of this movement has been in the creation of dementia friendly communities. Although varying according to context, they are places where signs of dementia are more readily recognized, and where citizens, civil servants, and businesses are better equipped to respond in supportive ways.  

    Critical as well to any scheme to enhance dementia care is attention to the needs of care partners.  As dementia progresses and symptoms worsen, the increased demands on care partners can create increased emotional distress; new or exacerbated health problems; and loss of financial security due to healthcare costs and disruptions in employment.

    It is increasingly possible to identify at-risk people during asymptomatic stages of disease, and treatment and prevention therapies may be developed. In the meantime, in the absence of effective treatment or cure, however, early diagnosis may foster anxiety, depression, and hopelessness. We need to mitigate this through social, policy, and educational efforts to improve awareness, eliminate stigma, and foster hope for those with the disease through engagement and continued participation in community life.  

    This session shared knowledge and innovation across borders on how best to support families and allow persons with dementia to maintain dignity, independence,  and fulfilling relationships at the highest level for as long as possible – to carry on with living in the face of a dementia diagnosis.

    Participant Profile:

    The 50 participants were drawn from all regions of the world and included health and social care leaders and practitioners, patient representatives, innovators, ethicists and policy-makers, along with representatives of civil society, the media and other stakeholders in the debate. As appropriate, they worked together in country and thematic teams.

    Session Format:

    The session was highly participatory, with a strong focus on building new insights and aggregating perspectives and experiences from different sectors, areas of expertise and regions. Working groups, each with a thematic and/or country focus, prepared recommendations.

    Key Questions:

    1. What are the scenarios that illustrate the scale and nature of the challenge posed by dementia now and in the decades to come in different parts of the world? How does stigma around dementia vary from country to country?  How has it been addressed?

    2. What matters most to people living with dementia?  How can patients and their families/supporters be better supported on diagnosis, in planning and shared decision making for the future and with a view to a flourishing, independent life as long as possible?

    3. What is the significance of earlier diagnosis of dementia, and how it can be achieved?  Is there potential harm, as well as advantage, in pursuing earlier diagnosis, and how might that be mitigated if so?

    4. What are the essential characteristics of a dementia friendly community, and how are they best realized among under-served populations? Do dementia friendly communities make a difference for individuals with the disease and their carers?  Do they matter to people with the disease? How do we know? Are they sustainable?

    5. How can carers at home and frontline professionals be best integrated in teams to sustain them and their own health, as well as provide the best possible care to people living with dementia?

    6. What are the larger implications for health and social care systems, planning structures, and capacity for the future, particularly in under-served communities?

    Outcomes and Impact:

    • Cross border learning and transmission of best practice in innovations in dementia care and dementia friendly communities
    • Ongoing networking and collaborations among participants and the institutions they represent
    • Action plans devised for specific country or thematic contexts
    • A Salzburg Statement of key principles guiding innovations in dementia care

    Online Library

    Alzheimer's Society. 5 publications about dementia that could help you. 24 October 2017.

    Alzheimer's Society-videos on Facebook.

    Atlas of Caregiving Pilot Study (we suggest looking at the case studies of Fay, Gabrielle, and Fernando especially).

    Barak Gaster, Eric Larson, Randall Curtis. Advance Directives from Dementia: Meeting a Unique Challenge. Jama, 6 November 2017.

    Building a Dementia Friendly World Symposium. Alzheimer's Society, 10 May 2017.

    Camic, Paul, Erin L. Baker, and Victoria Tischler “Theorizing How Art Gallery Interventions Impact People With Dementia and Their Caregivers.The Gerontologist. 56(6):1033–1041, 2016. 

    Camic, Paul and Helen Chatterjee. “Museums and art galleries as partners for public health.” Perspectives in Public Health. 133(1):66-71, 2013.

    Camic, Paul, Victoria Tischler, and Chantal Helen Pearman. “Viewing and making art together: A multi-session art-gallery-based intervention for people with dementia and their carers.Aging & Mental Health. 18(1):161-168, 2013. 

    Dementia A Public Health Priority. Chart by the WHO.

    Dementia Friendly Communities: Global developments. Alzheimer's Disease International, London, September 2017

    Dementia Friendly Communities-Resources. Alzheimer's Disease International.

    Edwards, Kikelomo Laniyonu. Grappling with Dementia in Nigeria-The Future is Bright. Presentation at the 32nd International Conference of Alzheimer’s Disease International, 26-29 April 2017, Kyoto, Japan.

    Graham, Judith, "Caregivers Draw Support By Mapping Their Relationship", Kaiser Health News, 21 September, 2017.

    Harrison, Charles R., Amelia M. Carton, Emilie V. Brotherhood, Chris J. D. Hardy, Miriam H. Cohen, Jason D. Warren and Sebastian J. Crutch. “Profiles in paint: contrasting responses to a common artistic exercise by people with different dementias.Arts & Health. 1-8, 2017.

    Hidden Voices: Women Speak Out on Dementia. Webinar from 19 October, 2017. Global Alzheimer's and Dementia Action Alliance.

    Lancet Commission on Dementia Intervention, Prevention and Care.

    Singh, Sandhya A. Department of Health, South Africa. Africa Ageing: Long.Term Care Systems for Africa. Presentation at the 2nd African Region Conference.

    Thomson, Linda J, Bridget Lockyer, Paul M Camic, and Helen J Chatterjee. "Effects of a Museum-Based Social Prescription Intervention on Quantitative Measures of Psychological Wellbeing in Older Adults." Perspectives in Public Health, 2017.

    Toby Williamson. Mapping dementia-friendly communities across Europe. European Foundation’s Initiative on Dementia, 2016.

    Unadkat, Shreena, Paul M. Camic, Trish Vella-Burrows. “Understanding the Experience of Group Singing for Couples Where One Partner Has a Diagnosis of Dementia.The Gerontologist. 57(3):469–478, 2017. 

    Visions for the Future of Dementia Friendly Communities: Workshop Report. WYLD Network.

    Multi-Year Series

    HEALTH AND HEALTH CARE INNOVATION IN THE 21ST CENTURY

    Salzburg Global Seminar has long been a leading forum for the exchange of ideas on issues in health and health care affecting countries throughout the world. At these meetings agendas have been re-set affecting policy and practice in crucial areas, such as patient safety and the engagement of patients in medical decision making. In 2010, Salzburg Global Seminar launched a multi-year series – Health and Health Care Innovation in the 21st Century – to crystallize new approaches to global health and health care in the face of emerging challenges affecting us now and set to continue on through the coming generation.

    For more info, visit: health.salzburgglobal.org

    SESSION PARTNERS

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