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L. Strengthening Services > 1. Sample narratives • Comments on the work: • should include people with dementia into workshop in order to hear their points of views. • In developing countries, financial status very much influence the QOL of people with dementia. K THAILAND PROFESSIONAL

B. Relations/Communication > 1. Sample narratives • How dementia has affected our relationship: You have heard from my wife about the deterioration in family and social relationships, stretching over a number of years, and which caused very deep wounds on either side. Though the scabs have healed, the scars still remain deep inside, though on the surface, the signs are growing fainter. But will they ever heal? Only time will tell. My behaviour caused a breakdown in communication with my wife and family, and almost led to a divorce as there was no indication that I had an illness causing the changes in me. Now there is a reversal of roles. My wife is now the man in the house, working as the breadwinner while I stay at home. She makes all the financial decisions, while I struggle to manage the complexities of a few pounds pocket money.Dealing with family matters, while I just can’t make up my mind on anything, and forgetting what I have decided, when I do decide. Dealing with the security of our house, while I gaily swan out, leaving doors and windows unlocked. Taking my place at school parent’s evenings while I stay at home in case I cause a scene. Dealing with the hazards of driving, while I admire the scenery, and so on. She has to shadow me, to protect me from myself, and double check everything I do. She doesn’t trust me any more and it’s hard to see how she can hold me in the same regard, or treat me with the same respect, as she once did. Have I become a burden or a liability to her? When dementia walked in the door, did romance fly out of the window? What keeps her going and motivated, love or duty? How does she cope when things become too much to her and she can’t turn to me? The answer is, she is one in a million and takes everything in her stride. She has grown broad shoulders and has taken over the role of, what is in effect, a one parent family. You could say my quality of life is good. I have little responsibility and get looked after. It was only while writing this that I realised I have a cushy number. Time does not permit me to say more, but I will finish by sharing with you the words from a song from Gigi (I Remember It Well, performed by Hermione Gingold and Maurice Chevalier), which is typical of our daily conversations. SCOTLAND PERSON WITH DEMENTIA

L. Strengthening Services > Access to services • I am full of great ideas to help people with dementia's quality of life after this conference - but 80% of the hurdles I will face will be financial - how do we get funding to start a Alzheimer's Care which might help PWD and their carers. Trouble getting volunteers.

A. Choices > Non restrictive context • Negative Disregard for person - ie talking about someone in front of them as if not there. Assumptions by people who do not know and fear ie loss of abilities in some area - loss of abilities in all areas (unable to communicate verbally - unable to feel or understand). Stigma, uncaring interactions and discrimination and discounting the person. NZ Professional Carer in Day Programme. Positive Making decisions for themselves regarding carers and timing of carers - dealing honestly with residents to develop trust - financial input to allow for small things (extra) in residential care (outings, vehciles, more staff) - unlimited visiting times in institutions. unconditional love for your fellow - eating food

K. Supporting Caregivers > Appreciation and care • Now there is a reversal of roles. B is now the man in the house, working as the breadwinner while I stay at home. Making all the financial decisions, while I struggle to manage the complexities of a few pounds pocket money. Dealing with family matters, while I just can’t make up my mind on anything, and forgetting what I have decided, when I do decide. Dealing with the security of our house, while I gaily swan out, leaving doors and windows unlocked. Taking my place at school parent’s evenings while I stay at home in case I cause a scene. Dealing with the hazards of driving, while I admire the scenery, and so on.She has to shadow me, to protect me from myself, and double check everything I do. She doesn’t trust me any more and it’s hard to see how she can hold me in the same regard, or treat me with the same respect, as she once did.Have I become a burden or a liability to her?

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

K. Supporting Caregivers > 1. Sample narratives • Positive Increasing support for carer so they are happy. Good co-operation between agencies. Allowing trust, silence, space. Respect - not treating like a child. Not designing areas with fluffy dolls. Treat like adults. Maximised autonomy for PWDs whilst maintaining their safety. Negative Financial - we are in a constant battle to get funding to provide services eg I am full of great ideas to help people with dementia's quality of life after this conference - but 80% of the hurdles I will face will be financial - how do we get funding to start a Alzheimer's Care which might help PWD and their carers. Trouble getting volunteers or professional carers who have been around for ages to treat pupil like adults. Families where one person takes all the burden, especially adult-children carers leads to resentment/frustration. Trouble getting early referrals from anyone (GPs, psychogeriatricians) so we can try and help early. Society's ignorance -disgust and fear. NEW ZEALAND PROFESSIONAL

B. Relations/Communication > 1. Sample narratives • Positive Making decisions for themselves regarding carers and timing of carers - dealing honestly with residents to develop trust - financial input to allow for small things (extra) in residential care (outings, vehicles, more staff) - unlimited visiting times in institutions - unconditional love for your fellow - eating food we want to eat from a cultural perspective. Negative Not being listened to - verbally - communication and not obstructing – body language. NEW ZEALAND PROFESSIONAL

B. Relations/Communication > 1. Sample narratives • Positive Support/love/understanding/acceptance from family, friend. Understanding/acceptance from within wide community. Physical quality environment - financial security, comfortable surroundings, familiar surroundings, safe environment. Emotional/general - continued social interaction, included within family circle, remaining a contributory member of family and group of friends, being allowed to make/contribute to decision making. Ability to access information about disease. Availability of resources and information. Availability of services. Contact with others in a similar situation. Good overall health. Negative Emotional/General - attitudes of friends and family, lack of understanding, difficulty in being accepted as a 'worthwhile' member/person, choices/decisions made on your behalf, lack of public awareness. Physical - lack of funds, inability to perform tasks of daily living to usual standard, being in an environment you are unfamiliar with or don't want to be there. Lack of resources and information, lack of services, isolation, poor general health. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Positive Love, meaningful personal relationships, security and safety, free from financial worries, ability to live one day at a time, time and understanding to make choices, peace of mind, serenity, having fun, social interactions within a community/groups, touch, meaningful activities. Negative Other people's judgements, discriminations, poverty, being told what to do and when to do it, being treated like a child, being unloved, mistreated, talked down to, treated like a number by the professionals, professional "'experts' know it all, they know best. NEW ZEALAND CAREGIVER

J. Basic Comforts > Clinical care • Right to day medication (subsidised) to enhance or stablise their illness. Due to financial issues with governments - maybe younger PWD had opportunities to day medication - financially beneficial as spouses able to continue working longer - or otherwise PWD need placement in care.

B. Relations/Communication > 1. Sample narratives • Support groups for PWD so be able to share their experiences, learn skills to make daily living easier to manage and make new friendships. Opportunities for PWD to advocate for themselves - family situations and living arrangements - daily activities. PWD opportunities to express their needs - present and future to politicians. Right to day medication (subsidised) to enhance or stablise their illness. Due to financial issues with governments - maybe younger PWD had opportunities to day medication – financially beneficial as spouses able to continue working longer - or otherwise PWD need placement in care. When diagnosed and if accepted by spouse and PWD, grief counselling offered to each, separately. NEW ZEALAND