Date Time Activity Location Key participants Sunday 3 Oct. Workshop on Ageing and Alzheimer s Disease *

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1 The Social Context of Ageing and Alzheimer s Disease in Jordan Amman, Jordan 3 7 October 2010 Jordan collaborators: Dr. S. Al-Makhamreh, Faculty of Social Work, Al-Balqa Applied University Dr. F. Hasna, Faculty of Nursing, Philadelphia University Prof. E. Al-Khateeb, Faculty of Medicine, University of Jordan UK collaborators: Dr. M.P. Sullivan, Brunel Institute for Ageing Studies, Brunel University Prof. C. Victor, Brunel Institute for Ageing Studies, Brunel University Prof. M. Gilhooly, Brunel Institute for Ageing Studies, Brunel University Schedule of activities: Date Time Activity Location Key participants Sunday 3 Oct Philadelphia See list below University Monday 4 Oct Tuesday 5 Oct Wednesday 6 Oct Thursday 7 Oct *Workshop Workshop Aims: 9am 1.15pm (followed by lunch) 9am 12pm Workshop on Ageing and Alzheimer s Disease * Nursing home visits (White Beds Institute TBC) National Council for Family Affairs Jordanian Nursing Council (TBC) Meeting between Jordan and UK collaborators Al-Balqa or Philadelphia University S. Al-Makhamreh, F. Hasna, E. Al- Khateeb, M.P. Sullivan, C. Victor, M. Gilhooly 1. To provide a forum for local opinion leaders in health and social care to identify and discuss the needs of older people with Alzheimer s disease and related dementias and their family carers; 2. To evaluate and discuss the impact of care for older people with Alzheimer s disease and related dementias on traditional family patterns of caring and formal systems of health and social care;

2 3. To identify and discuss the strengths and weaknesses in current care systems, including the readiness of health and social care professionals, to respond to the needs of this population in light of predicted demographic changes; and 4. To identify relevant areas /questions for formal research enquiry in terms of the social impact of dementia and professional caring responses for those in need. Participants (Advisory Group): [list of names and affiliation] Ministry of Social Development Head of Elderly People Section, Mr Mohamed Shabaneh National Council for Family Affairs Haifa Abu Ghazaleh (TBC) Ministry of Health Dr Adel Belbeissi Family Carer (s) Alzheimer s Ambassadors (TBC) (1-2) World Health Organisation Ms Tityana Alkoor Family Physician representative TBC Nursing Home representative (s) Ms Haifa Al Bashir International Medical Corps (NGO) Chris Sckopic /Ms Lina Demographer Professor Issa Almasarweh Jordanian Nursing Council Daad Alkhas Population Council TBC Supreme Health Council TBC Private Sector TBC Columbia University Research Centre, Jordan TBC Al-Balqa Applied University, Social work Department Colleague of Dr. Al- Makhamreh Brunel Institute for Ageing Studies Ms Marianne Keanne (15-20 English speaking participants to be invited and confirmed by Jordanian Partners) Agenda: Welcome S. Al-Makhamreh The UK Dementia Strategy: Responding to the Health and Social Care Needs of People with Dementia and their Families C. Victor The Prospect of Elderly People in I. Almasarweh Jordan: and Beyond A Study of Dementia in Jordan E. Al-Khateeb Policies, Services and Education for F. Hasna Older Age Group: A GAP Analysis Coffee How Social Work can Impact on the S. Al-Makhamreh Well-Being of Elderly People Questions for presenters All Small group discussions M.P. Sullivan

3 Feedback to large group F. Hasna and M. Gilhooly Closing remarks S. Al-Makhamreh and M.P. Sullivan I.15pm Lunch Hosted by Brunel Institute for Ageing Studies

4 Appendix 1 UK Proposal for funds to begin collaboration with Jordanian colleagues Background According to the UN (2009) 5.5% of Jordan's current 6 million inhabitants are over the age of 60, and this is expected to increase dramatically by We estimate that there are currently 16,500 people with clinically significant Alzheimer's disease and this will increase over the next forty years during which time the availability of younger people to care for them decreases. This demographic revolution has important implications socially, politically, culturally and in terms of the demands made upon formal (and informal) social institutions that provide care and support for older people. The care of older people with dementia is particularly current given the various social changes in Jordan that are impacting on the ability of the family and religious leaders to meet the needs of individuals with complex needs, and challenging long-established views regarding when and how to engage others in private matters (Sullivan et al., 2010). Proposed programme The aims of proposed programme are to undertake an initial scoping study to facilitate the development of a UK-Jordanian collaborative research proposal that will: (1) enumerate the size of the current and future disease burden represented by Alzheimer's disease and related dementias; (2) evaluate the social impact and consequences of dementia (e.g. family care, social exclusion); and (3) facilitate the development of professional caring responses for people with the disease (e.g. nursing, social work, medicine). This collaboration was initiated by a multidisciplinary team of researchers in Jordan led by Prof. S. Al-Makhamreh, Faculty of Social Work, Al-Balqa Applied University, with whom we have an established working relationship. Additional collaborators include Prof. F. Hasna, Faculty of Nursing, Philadelphia University, and Prof. E. Al- Khateeb, Faculty of Medicine, University of Jordan. To achieve the above an initial 5-day scoping study will be conducted to facilitate this international collaboration, confirm the proposed research aims and methods, and explore costs. Prior to travelling to Jordan the UK team will (a) undertake a library based literature review to further inform our planned scoping methods. The proposed methods include: (b) scoping interviews with Jordanian project collaborators including preparation of a broad outline of the research proposal (e.g. methods, costs); (c) a workshop with key Jordanian stakeholders identified by our collaborators (e.g. government representatives, academics, service providers) to collect informed opinions on key local areas of concern; and (d) site visits to relevant formal/voluntary organisations involved in the care of older people to discuss data collection methods and ethical considerations.

5 Outcomes The outcomes from this scoping study will enable the UK-Jordan team to develop a research proposal to explore the social context of ageing and dementia in Jordan in which the aims and methods are context appropriate, and facilitate strategies for dissemination and knowledge transfer that are also contextually relevant. The research proposal will be finalised by the UK-Jordanian team following the scoping study, and submitted to a UK funding body. The overall results from the this research have the potential to provide culturally relevant insights into: (a) the wellbeing of older people with Alzheimer's disease and related dementias in Jordan; (b) the tension between the development of formal systems of care (including increasing the capacity of health and social care practitioners for skilled practice) and the central role of the family system in the provision of care; and (c) the challenges that these institutions face given the predicted demographic changes. Additional outputs include: Publication of a joint UK-Jordanian paper in a peer-reviewed journal that introduces the issues of ageing and Alzheimer's disease and related dementias in the Jordanian context (e.g. Dementia International Journal of Social Research and Practice); and Brunel Institute of Ageing Studies workshop on the social contexts of dementia in developing countries.