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A. Choices > 1. Sample narratives • 2. What improves quality of life for people with dementia? The loving care received from our care partners- friends and family. The understanding and help we receive from folks who work with us. The support and acceptance we receive from groups such as DASN and Living with memory loss support group Being allowed to do things ourselves, with as much help as needed to make the activities as stress free as possible-rather than having people take over and do it for us so that we still have that sense of achievement The assistance we receive from our Government that enables us to receive medications and care at a price we can accord and makes us feel like we still have value in our community. The understanding and advice given to us by the local Alzheimer's Association people around us and the mental health people we are under. The patience and understanding of a good General Practitioner The medications that help us to enjoy an increased time of being able to care for ourselves, at least in part. Good respite care with people we know and trust and with whom our carers are happy and confident to leave us. Activity groups such as day clubs that cater for our need and interests at a level where we can participate and achieve. AUSTRALIA PERSON WITH DEMENTIA

F. Enjoyment > Enjoy the moment • Capture the happy moments and keep them precious.

B. Relations/Communication > 1. Sample narratives • Every experience adds. Mother is a wonderful person, devoted helping and loving. When the symptoms arrived I took it in a very negative way. She never taught me to look after her. [I found myself] living in an environment full of shame and fear. Wake up and say ‘I can’t do it’, shame. I didn’t have anyone in the whole of Lebanon. Maybe they were more loving [brothers and family]. Seemed like I was not in love with my mother. She was a load on the whole family. Play games with her now. When I started acting with her it helped. I’m selfishly happy to get the hugging and kissing that I give her and that she gives me. We are very happy. I went to all my neighbours one by one and told them it was not a curse, not from God, not contagious, just something that can happen. If people were told they would have a positive view. Through the sickness you could enjoy life, sunset, smell of flowers, sun and moon. LEBANON CAREGIVER

L. Strengthening Services > Access to services • Good respite care with people we know and trust and with whom our carers are happy and confident to leave us

B. Relations/Communication > 1. Sample narratives • How dementia has affected our relationship: We were a reasonably happy family with 4 children, doing what most families do. Gradually, and it was gradually, over a number of years, probably about 6 or 7, tensions began to build up. Small things to begin with. C would get annoyed with the children because they didn’t want to do the things that he wanted. He would pick a fight over anything and was very unreasonable. The children stopped having friends around because their dad would embarrass them by saying silly things to them. He said he was just being friendly but he couldn't understand that teenagers don’t like to be treated like children. C had suffered from high blood pressure for a number of years and slowly started to forget things at work. Things that he had done day in day out for years. He forgot names of people he had known and worked with, lost his house keys several times and would occasionally go out, forgetting to lock the door. He became quite aggressive, losing his temper regularly at the slightest thing. He would say I had done something or moved something when I hadn’t, and I couldn’t convince him otherwise. I began going out less with my friends because I was being accused of seeing someone else and was tired of the endless questions. “Why have you got lipstick on?” “Why are you dressed up?” “Why have you washed your hair?” things that I normally did when going out. The children by this time didn’t particularly like their dad any more, and I certainly didn’t like this man. I dreaded him coming home from work. When the children were 20, 18, 16 and 9 we finally got the doctor to agree for James to see a neurologist and have a scan, but this was likely to take about a year. I couldn’t wait that long so we went privately and paid for the consultation and scan. My mind was made up. We argued so much by this time everyone was miserable. If the scan showed that there was nothing wrong, I was leaving C. I couldn’t take any more. While we were at the hospital for the scan, C had picked up a leaflet about dementia for his brother who lived at home with his mother who had just been diagnosed with Alzheimer’s. I read the booklet and was amazed at the number of similarities to C. I tried to talk to C about them, but all he would say was “I’m not like that”. Later C had more tests, then, out of the blue, I had a visit from the community psychiatric nurse and the psychiatrist. They asked lots of questions about C before I had noticed him change. Then they told me that he had dementia. Part of me already knew but I cried probably more with relief now that I knew what was causing him to behave this way. It was the same for the children. Once he began taking medication he calmed down and slowly we began rebuilding our lives. The children called them his happy pills. He became involved with Alzheimer’s Scotland Younger Persons Project and has never looked back, despite having bad days. The children have come through all of this, but I think the boys have struggled more and still do, mainly because they were younger and had enough problems growing up without having to deal with this illness. I would say we now get on as a family. The girls have their own places now and visit regularly, and the boys are at home, RR still being at school. We have all had to make adjustments in our lives to help C. Writing messages on a notice board, reminding him to take his medication, making sure that he is dressed properly for the weather. I sometimes feel trapped in the middle of everything, having had to take on all the responsibilities. I have to decide what things I should tell C about and what not to, because of how he may react as he doesn’t have as good a sense of judgement any longer. We do still get frustrated and times and argue, but no more than other families. I don’t know if C and I will ever get back to the way things were before the illness started, a lot has happened, but for me the frustrating thing about it is that C has pushed it to the back of his mind. It is still near the front of mine. We have had to start from the beginning taking a day at a time, sometimes there are good days and sometimes bad, but we are getting there. SCOTLAND CAREGIVER

A. Choices > 1. Sample narratives • I am currently doing a postgraduate course at Ritsumeikan University. I am also a care worker. My late grandfather had dementia. He died when I was seven years old. It was twenty years ago. Thinking about it now, I feel like I could have done something more at the time. QOL is a difficult issue. I think QOL should be considered for each individual case rather than as general QOL for all people with dementia. Everyone has QOL. Most of the things that make people with dementia happy would be the same kind of things which make us all happy. Of course there are exceptions. Regarding choices, I think it is necessary to have the opportunity to change choices to suit him/her rather than making a rigid choice. I am sorry I cannot suggest a particular method for this. Thank you very much for such a useful time I have had at this conference. A1 JAPAN PROFESSIONAL

C. Love and Trust > 1. Sample narratives • I have an 89-year-old friend who is experiencing progressive forgetfulness and loosing her verbal abilities. In recent months she has been upset about her granddaughters upcoming wedding because she is not pleased about the fiancé. Her anxiety about this matter has added to her inability to express herself. But, having known my friend for almost 40 years, I know that she would have trouble talking about her feelings about the situation in any event because she would feel it was rude. Last week I received an unexpected invitation to the wedding and I told my friend. Her response was, “Oh, then you can drive me and we can sit together and I won’t have to bother my family”. Using this opportunity to address her anxiety about the wedding I said that family occasions can intensify a lot of feelings, bad and good, and that she might feel better being with someone who is not in the family and is her close friend. “Yes, and you might need to leave early and I could go too”, she replied, looking very pleased. “Or, you can poke me and I’ll know what you’re thinking. It’ll be okay”, I added jokingly. The wedding is 3 weeks away and I will be escorting her. She is very happy about that and less anxious, although still not happy about the marital union. When she does talk about the wedding date, the anxiety returns along with her increased dementia symptoms, but the mere reminder of the driving plans and her being with someone who knows her well seems to make her feel secure. USA Professional

C. Love and Trust > Touch and hugging • I’m selfishly happy to get the hugging and kissing that I give her and that she gives me. We are very happy.

J. Basic Comforts > Ambient temperature • keep the home a happy warm and comfortable place.

J. Basic Comforts > 1. Sample narratives • Make them feel safe, keep the home a happy warm and comfortable place. AUSTRALIA CAREGIVER

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.

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

L. Strengthening Services > 1. Sample narratives • Positive Better knowledge - people who provide care need to be informed and updated - attend conferences such as these 3 days - meet network, share and develop ideas. Sense of belonging and knowing who you are, feeling involved and valued - contribute to daily life. Let people make their own mistakes whilst being loved. Lots of fun and laughter. Negative Ignorance - people not knowing anything about dementia or what it means for the PWD. Withdrawal of services, cost cutting budget constraints. Non- treatment of other conditions affecting mood - mental state eg delerium, psychosis. NEW ZEALAND PROFESSIONAL

A. Choices > 1. Sample narratives • To have patience - offer help - but don't take away independence. To have security - to have familiarity. To see happy smiling faces - to be touched if that is that they like. To be understood, not patronised. Not to be reminded of bad things which may have happened. Negative Sometimes the carer! Insisting on a bath or shower daily - so what if you don't - has anyone ever died from NOT having a bath!! Being treated like children. Having to do things that they do not want to do. Denial. Loss of rights. Sometimes too much knowledge. PROFESSIONAL

J. Basic Comforts > Clinical care • Treatment of other conditions affecting mood - mental state eg delirium, psychosis.

K. Supporting Caregivers > 1. Sample narratives • What about all those couples NOT happy in their marriage/partnership? The burden of caring must be overwhelming!

K. Supporting Caregivers > 1. Sample narratives • What I think is the relationship between my quality of life and the quality of life of my main family supporter. We have certainly seen a great reversal of roles since my diagnosis. ‘G’ has had to take over some of the things I was responsible for but I can no longer do. ‘G’ has had a real drop in his quality of life. From being pastors of a church with all the planning and activity that entailed to living day to day, depending on what my condition is that day. While he is quite happy to care for me he no longer has the personal satisfaction of his previous work as well as his concern for me and my loss.I would add though at this point that this varies from time to time. As we face each challenge and find the ways to best handle each situation we find that our quality of life comes up again. Also though there are times when he has more concerns than I do, as I don't always realise the problems I am having or causing. In many ways I think my quality of life is now better than his as he has to take the responsibility for everything. It is true to say that our quality of life is linked together and definitely both affected by the problems caused by dementia. ----------------------------------------- AUSTRALIA PERSON WITH DEMENTIA

F. Enjoyment > 1. Sample narratives • When I was 18 my mother showed signs. My father was the primary caregiver – took things day by day. I tried to escape. He accepted her changes as they came. About a year ago my father showed signs of forgetfulness – 3 days ago [he was diagnosed with] end stage cancer. Capture the happy moments and keep them precious. INDIA CAREGIVER