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Waugh E, PhD; Triscott JAC, MD, CCFP; Szafran O, MHSA Department of Family Medicine Centre for the Cross-Cultural

Background. There is little research on how cultural and ethnic factors can affect dementia and end-of-life care. There is a need to be aware of the cultural impact on families, recognition of dementia in a family member, and that more in-depth discussion about symptoms and the meaning of aging ma

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Waugh E, PhD; Triscott JAC, MD, CCFP; Szafran O, MHSA Department of Family Medicine Centre for the Cross-Cultural

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    1. Waugh E, PhD; Triscott JAC, MD, CCFP; Szafran O, MHSA Department of Family Medicine & Centre for the Cross-Cultural Study of Health & Healing University of Alberta Towards Culturally Responsive Care in the Community in Dementia & End-of-Life Care: Consensus Group Process in Five Cultural Communities

    2. Background There is little research on how cultural and ethnic factors can affect dementia and end-of-life care. There is a need to be aware of the cultural impact on families, recognition of dementia in a family member, and that more in-depth discussion about symptoms and the meaning of aging may be required.

    3. Canadian Consensus Guidelines on Dementia Conclusion 34 - Family physicians need to be aware of the cultural impact on families; recognition of dementia in a family member and that more in-depth discussion about symptoms and the meaning of aging may be required (Grade B, Level 3,Consensus (Pollitt, 1996). Conclusion 35 - Physicians should recognize that measure of cognitive abilities (e.g.MMSE) would often overestimate cognitive impairment in many cultural and linguistic groups. (Grade B, Level3, Consensus (Crum et.al. 1993,Uhlmann et al, l991)

    4. Canadian Consensus Guidelines on Dementia (contd) Conclusion 36 - The care and management of patients from specific cultural groups should take into account the risk of isolation, the importance of culturally appropriate services and special issue that arise in providing caregiver support (Grade B, Level 3,Consensus (Pollitt, 1996). Canadian Consensus Conference on Dementia, CMAJ 1999; 160 (12), Supplement, June 15.

    5. Study Objective To examine how dementia and end-of-life issues are recognized, cared for, and treated in five cultural communities in northern Alberta.

    6. Design Participatory research employing Consensus Group process. Participants members from each of five cultural communities in northern Alberta: First Nations (Cree) Wabasca, Northern Alberta Mandarin-speaking Chinese Cantonese-speaking Chinese Francophone ? Muslim

    8. Consensus Group Involved a group discussion with the goal of providing culturally-appropriate, community consensus responses to items on a questionnaire on dementia/end-of-life issues. Purpose - to obtain consensus agreement within the group process as to the most culturally-appropriate response to each question. 10-20 Community Members generally elderly, immigrants, non-English or English speaking, members of the respective cultural group.

    9. Consensus Group Facilitator One Facilitator from each community led the Consensus Group. Facilitator was selected based on leadership role in the community. Facilitator received honorarium for organization, focus group facilitation, and working group participation

    10. Role of Facilitator Recruit 10-20 community members for Consensus Group. Chair the Consensus Group process. Explain questions in language of ethnic group, if necessary. Record group consensus responses on the questionnaire. Meet with the investigators to review any issues on the Consensus Group process and the group responses.

    11. Consensus Group Process 10-20 community members in each Consensus Group. Focused discussion based on questionnaire. Consensus reached if community members agreed on response to each question. If consensus was not achieved, the actual responses were recorded. Held in the respective cultural community. Approx. 2 hours duration, at a date/time convenient to community members, lunch/dinner provided. Community members were paid honorarium for taking part in the Consensus Group.

    13. Questionnaire Culturally-appropriate questionnaires were developed for each of the five cultural communities, addressing: Dementia recognition markers Cultural and religious principles relevant to end-of- life issues Health care responsibilities Caregiving Living wills, legal guardians Resuscitation & end-of-life care (Questionnaire was translated into French for Francophone group)

    14. Sample Questions How often do members of the ____ community prefer traditional medicine to western medicine? When the elderly are forgetful or lose their way, to what extent does the ___ community recognize this as a problem? How often does the ___ community rely on an extended family system for caring for persons with cognitive difficulties? If the elderly person refused to take medication because of symptoms related to cognitive problems, what would the ___ community want done? How acceptable is it in the ___ community to move the aged to a home outside of the community? How often to members of the ___ community make living wills or advance directives that clarify their wishes about care later? How does the ___ community feel about active medical intervention in end-of-life care?

    15. Results A total of 65 community members participated in the Consensus Groups. Dementia Recognition All five cultural groups indicated that: forgetfulness & losing ones way in the elderly is a problem that requires critical care immediately; special treatment is required when the elderly are lethargic, confused, and have problems with medication; cognitive problems are regarded as an elderly illness.

    16. Results (continued Cultural/Religious Principles & Values Muslim - oldest and closest male blood relative speaks for incapacitated elderly male. Cantonese-speaking Chinese the oldest son takes on the responsibility for health decision-making. Mandarin-speaking Chinese consult with family members, depending on education and economic status. see value in the person, not as an end-of-life case; want more compassion and respect for the elders . First Nations (Cree) believe very strongly that end-of-life deals with the spirit world and only the elderly have knowledge. Francophone the elderly have strong religious values and beliefs.

    17. Results (continued): Health Care Responsibility for Dementia Responsibility for care of the elderly with cognitive problems: Muslim & Francophone extended family Chinese & First Nations (Cree) nuclear family Who should pay for treatment outside the community? Muslim family Francophone health care system First Nations (Cree) government Who should pay for care by family member in the home? Muslim - family Chinese health care system Francophone & First Nations (Cree) government All groups felt it was very unacceptable to move the aged to a home outside the community, except for the Cantonese-speaking who indicated it was somewhat acceptable.

    18. Results (continued): Caregiving All groups wanted more support for care in the home. Responsibility for care in the home primarily rests with: Muslim & Cantonese unmarried daughter or oldest sons wife Mandarin democratic family decision First Nations (Cree) Immediate family Francophone closest family member

    19. Results (continued): Living Wills, Legal Guardians How often do members make living wills? First Nations (Cree) - never Mandarin & Muslim rarely Cantonese sometimes Francophone often How often do members appoint legal guardians? First Nations (Cree) & Mandarin never Cantonese & Muslim rarely Francophone often

    20. Results (continued): Resuscitation & End-of-Life Care Muslims felt that as much technology as possible should be used to keep a person alive on life support. The Cantonese & Mandarin-speaking Chinese and the Muslims strongly approve of active medical intervention in end of life care. First Nations (Cree) somewhat approve a medical intervention depending on the individual and amount of suffering. The Francophone felt there should be minimal intervention.

    21. Results (continued): Language Language was a significant barrier for Cantonese & Mandarin-speaking and First Nations (Cree) in accessing resources and interfacing with health care professionals. In Cree there is no word for the disease dementia.

    23. Limitations The study involved only one specific community within each cultural group, therefore, the generalizability of the study findings is unknown. Assume that the consensus responses are reflective of the community. No female members in the Muslim Consensus Group.

    24. Summary Health care professionals need to have a better understanding of how various cultures view end-of-life care and the impact it has on family caregivers and the community. This understanding is necessary in order to better assess, develop, treat and manage culturally-appropriate community services.

    25. Wabasca Reserve Northern Alberta Due to the Study findings from interviews with the elders and health care providers at Wabasca the following concerns were identified: 50% of the community elders only spoke Woodland Cree. Language barrier was a concern when interacting with the physicians and other healthcare providers. Few elders participated in the Day Program due to lack of transportation

    26. Wabasca Reserve Northern Alberta Many of the elders were survivors of the Residential Schools, e.g. even a picture of the children was displaced in senior lodge. Seniors were fearful of institionalization. The local school closed their Elder Room as the elders could not participate due to limited transportation. Traditional food caught on the reserve could not be served in the lodge due to Government regulation and inspection.

    27. Wabasca Reserve Northern Alberta There was a disconnect between Provincial and Federal Funding and jurisdiction The local Lodge senior facility had no program to develop Continuing Care in Wabasca, therefore, the elders had to go to Athabasca for Continuing Care The local Reserve has a training course for their youth in licensed practical nurse training but unable to hire due to no program funding.

    28. Wabasca Reserve Northern Alberta Reference: The Ohpasikohnewan Elders Society:Indigenous Day Program Development Proposal

    29. Acknowledgements This study was funded by the Pallium Project (Phase II) under the aegis of the Primary Health Care Transition Fund, Health Canada. A special thanks to all the Facilitators and Consensus Group participants, without whom this study would not have been possible. We are also grateful to Ms. Bunny Bourgeois for administrative assistance on this project.

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