J. Basic Comforts > 1. Sample narratives
• Have helped people with dementia Well trained staff. Consistency of staff across all shifts. Life books for staff/volunteers to discuss. Good clinical care to prevent health crisis. Staff not task oriented but focus on the needs of the resident. Use of interdisciplinary team. Have helped carers Welcoming environment/no restrictions. Feel part of the team. Involved in decision making. Carer support groups. Assistance with taking resident out into community. Using facility for family functions. Positive Ever changing environment rewarding. Can provide holistic care. Can include family/carers. End of life experiences – privilege. When you get the culture right it all falls into place. Joy of working with people with dementia (life can be fun). Negative Funding. Finding good quality staff. Expectations of family member in a residential facility. Lack of time. Lack of recognition from community about the value of working in aged care. Keep up the good work.
A AUSTRALIA PROFESSIONAL
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K. Supporting Caregivers > Appreciation and care
• I thought my father was the strongest man in the world. My mother walks away, not found for 6 hours. I’m from a culture where the daughter looks after the parents. We were all over the world. We were often not there. Father can’t cope after two years, he got very tired. Not many care places in S_. It was awful, it wasn’t what he expected. They didn’t know how [to care] and they didn’t have time. My father got very sad, after 14 days father got sick and he died.
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B. Relations/Communication > 1. Sample narratives
• I was the oldest of 5, very beloved, I thought my father was the strongest man in the world. When in 1995 the telephone rang, [we were told that my mother had walked away and had not been] found for 6 hours. What is it that we’re going to do? My mother came to Holland, I wanted father to come over. He wanted to do it himself. We were living all over the world – we make a schedule. Some family things happened. Father can’t cope after two years, he got very tired. Not many care places in Surinam. It was awful, it wasn’t what he expected. They didn’t know how [to care] and they didn’t have time. They broke her hips, they let her fall over. Saw my mother on the balcony on the 4th floor. We couldn’t keep it that way. My father got very sad, after 14 days father got sick and he died. A few months later my mother died. I don’t know where to put the pain. I’m from a culture where the daughter looks after the parents, we were all over the world. We were often not there. He believed she was going to be the first to survive the illness. I’m sure my mother missed that, the things daughters do with mothers. SURINAM CAREGIVER
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H. Spirituality > 2. Any other
• Maintenance of culture and spiritual "bliss".
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D. Identity/Continuity > 1. Sample narratives
• Nursing background, researcher and training family care giver. Culture’ is also an important element to be part of QOL. Preserving individual’s social culture helps PWD to live in a more comfortable life as disease progresses. Since person with late stage of dementia often lives the life in the past. Chinese people would feel safe and happy when one continues to live own cultural life styles. PROFESSIONAL HONG KONG.
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G. Creativity/Aesthetics > 1. Sample narratives
• Positive Availability to information about dementia - written, verbal, IT - when needed, where needed - even rural/remote areas. Supportive understanding partner (person with dementia has little/no choice in this). Opportunities to continue/aquire new (illustrated doctor at day centre) - skills, tasks, interests. Acceptance of family and friends of person - inclusion in family/social occasions. Safe/pleasant environment - for me it would mean being able to spend time outside. Opportunity to worship, spend time quietly and reflectively. Chance to listen to music - appropriate to one's taste. If in residential setting - opportunities to leave residential setting. Sharing responsibilities and privileges of care with others. A clear plan for future - reassurance about ongoing care. Care offered that is appropriate to language and culture of person with dementia. Negative In residential setting - predominance of medical model of care. Person with dementia being part of a 'dysfunctional' family (not much may be able to be done about this if family unwilling). View of life that doesn't see sickness/suffering as an integral part of life. Financial hardship placed on family of person with dementia. NEW ZEALAND PROFESSIONAL
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