H. Spirituality > Connected to God
• Even looking at your parent’s face is like worshipping God, the magic touch and the magic look when she progressed with the illness.
CARER SAUDI ARABIA
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K. Supporting Caregivers > 1. Sample narratives
• I come from a country where there is a lot of stigma, where there is no help. Nobody tells you hug your mother, to love your mother. You can turn your love off. CAREGIVER LEBANON
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D. Identity/Continuity > 1. Sample narratives
• Maintenance of relationships, family and social, cultural, community. Maintenance of skills and adaptation of skills to new activities. Consistency of care when support is required from support agencies, medical professionals, social activities. Care/case management by professional worker for complex situations. Care-focused support which addresses needs of carer in order to maintain the caring role with energy. Flexible funding which is available for whichever needs are identified by the person with dementia and the carer - not tied to specific/exclusive services. Familiar, or at least homely, surroundings, particularly as the disease progresses. Music, photos, written personal history, video of family occasions which prompt positive memories and emotions. Physical contact, touch etc. Presence of pets for animal lovers. Sharing of humour. Ritual, eg religious, family, social. Inclusion in planning, decision making, being offered choices and opportunities. Recognition of the caregiver in the relationship as equally in need of support in all of the areas which are new, confusing, demanding etc. due to the diagnosis of partner's/parents/others dementia. AUSTRALIA PROFESSIONAL
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B. Relations/Communication > 1. Sample narratives
• Positive Family/friends/community need knowledge of the dementias. Community education sessions provided to all age groups eg children in schools, young adults who interact with people eg bankers, police, social services, seniors in clubs, churches etc. Literature provided appropriate to these age groups and also cultural variations. Maintenance of independence and autonomy – this follows understanding and education. Carers need to be careful not to 'mother' or smother the person with dementia, each needs to understand the individual. What was their past life? What would they normally like to do? Do we need to allow the person to take some risks which are not serious safety issues? There are many choices which can be made by people with dementia throughout the day. Carers can give emphasis to thinking about looking for opportunities to give choices and feelings of the person being in control. Security/trust - maintaining a consistent approach within the home, or carers in residential care can help produce a feeling of trust. Regular routines (with input by the person with dementia) and continued communication and family, extended family and long-term friends. Appropriate touch and intimacy are helpful to feelings of security. Warmth. Sometimes basic issues of tidiness and hygiene are less important than the social interactive issues which are good feelings. Maintaining connections with old friends and clubs can be facilitated by enlisting help from those people. They can be assisted to understand the issues and enlisted to take a turn in transport and involvement. We need to think carefully about what the person has previously enjoyed doing, and use these things eg music, gardening, sport, literature, family outings etc. Stimulation can be helpful, but should not be overwhelming. This is very individual, and needs to suit the person's interest and also the stage of the disease. Respite for the carer is essentially helpful in maintaining QOL for the person with dementia. This is individual, could be in home, as an outing, or in a residential setting. Some helpful issues need to be introduced slowly, time may need to be allowed for assimilation of new ideas. NEW ZEALAND PROFESSIONAL
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C. Love and Trust > 1. Sample narratives
• Positive Feeling loved. By not only a physical hug (which some of my clients say they only get once a week at the centre) but by all over actions. By not feeling a nuisance and a burden on the family/carer. Touch is so important - hand/feet massage, manicures, facials makes people feel cherished and special and reduces agitation. It is hard to run away when your feet are in a nice warm foot bath or your nail or drying! Negatives Carers who have not or will not accept their loved ones situation - know it but do not accept. Resentments. Loud, raised voices - shouting orders - leads to aggression. Marriages which pre-dementia have not been happy and when dementia accentuates not very nice behaviour - education/marriage counselling is not always successful. Once again I believe love is the key. AUSTRALIA CAREGIVER
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A. Choices > 1. Sample narratives
• Promote quality of life by remembering each person is individual and what they want to do, or can do, on any given day or time of day, will differ from day to day. We all have good and bad days no matter what our age or our stage of dementia. God help anyone who gets me up at 7am to shower when I am elderly. Hindering quality of life by neglecting personal choice, by neglecting physical touch and caring without a sense of humour. Laugh with the person, because of the person, not at the person. NEW ZEALAND PROFESSIONAL
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H. Spirituality > 1. Sample narratives
• Spirituality has helped us a great deal in accepting and not denying the diagnosis. Even looking at your parent’s face is like worshipping God, the magic touch and the magic look when she progressed with the illness. SAUDI ARABIA CARER
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