Keywords Search Page

125 Search Results:

B. Relations/Communication > Keep communicating • Negative Communication - sensory impairment, Deal with loss of ability to participate in communication effectively and pleasurably, being misunderstood, by carer taking time/effort to optimise communication. Environment - not inappropriately restrictive, uncomfortable, alien, boring. Health/happiness - pain, disability, sensory impairment, psychiatric disorder, high level emotional distress. Quality of professional care - disrespectful, dehumanising, ill-coordinated, inadequate in amount/skill level. Quality of family care - conflictual, disrespectful, abusive, burden rather than cherished. Personhood - loss of self-worth, personal identity, loss of ability to work, loss of ability to love, loss of dignity. Deal with loss of ability to participate in communication effectively and pleasurably, being misunderstood, by carer taking time/effort to optimise communication.

K. Supporting Caregivers > Information • - getting reports from staff of all the positives of their family member.

K. Supporting Caregivers > Information • - singing, dancing, exercises etc. family members join the group 1 x monthly. They get to see their loved ones having fun and meet other carers to form ongoing relationships.

D. Identity/Continuity > 1. Sample narratives • . What improves quality of life for people with dementia? Medication therapy A support network that gives you hope and treats you as you were before diagnosis (although they must understand your limitations now). Being treated as the person whom you were before diagnosis. Being treated as a person not a patient by family and friends. Having a decision in your treatment plan with your doctor. Being financially stable is a big help as it alleviates a big stressor that could hinder our well being. CANADA PERSON WITH DEMENTIA

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

K. Supporting Caregivers > Appreciation and care • A good caregiver is so essential. Daily routine, Family an friends, lots of support. At this point in my life a support group for both myself and my caregiver.

H. Spirituality > Special ceremonies • Arrange facility activities around person and family life eg celebrate wedding anniversary in the facility.

H. Spirituality > 1. Sample narratives • As a nurse working in a rest home I have found that spirituality in the elderly with dementia is very important to them whether it be by sitting quietly and feeling connected to God or enjoying creativity or enjoying others entertaining them. My own mother who has dementia would like to go to church every day. She was/is a very religious person and helps out in various ways in her church. When she is in church she just sits there and absorbs the atmosphere around her. People have said they enjoy sitting near to her, Her spirituality invades them. My mother responds well to be called by her first name. She will not know who the person is who is talking to her but smiles and greets this person because she knows intuitively that that person is a friend and will not hurt her. She now goes twice a week to an Alzheimer group where she participates in games and has good social interaction with those other people there. As I work I have a carer coming into help mum for some of the time I am away. She feels safe and secure with ‘R’ who she has named Jane. Mum treats ‘R’as part of the family and welcoming when she arrives. At times she will get angry and verbally aggressive with her as she does with me. I was told that mum didn't have delusions but fractionated images that were real to her. She has 2 children and her images are about her children at different times in their life. At times it is difficult to tell which baby or child she is talking about when she is talking to me her adult daughter. She might say "H, where is that ‘H’ is at someone place". I often placate her by telling her she is in Christchurch with my sister which she accepts. We live in Napier. J NEW ZEALAND PROFESSIONAL

G. Creativity/Aesthetics > Activities • As I work I have a carer coming into help mum for some of the time I am away. She feels safe and secure with 'R' who she has named 'J'. Mum treats 'R'as part of the family and welcoming when she arrives. At times she will get angry and verbally aggressive with her as she does with me.

J. Basic Comforts > Individual care plans • Avoid physical abuse by carers - family and care staff.

D. Identity/Continuity > Person Centered • Avoid rejection by community in particular a community of friends themselves ageing who feel that they are no longer able to cope with having a person with dementia in their midst. The community imposing options for care - respite in a rest home without discussion and day care that did not meet the needs of the person with dementia.

D. Identity/Continuity > Giving a person respect • Being flexible, tolerent and respectful. Not including me in on my consition, marital an family situations. Hiding me away somewhere.

I. Stimulation > Moderation • Constancy, routine = meals, activities, bed time etc. People around - family and helpers. Quiet - 'Let me doze or sleep."

B. Relations/Communication > Connections • 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.

B. Relations/Communication > Understanding by others • Direct some Alzheimer's awareness programmes at school children - this will help to improve the understanding of this group of society and encourage better communication with relatives, family friends with AD.

B. Relations/Communication > Connections • Do not deny importance of wider family and friends.

A. Choices > 1. Sample narratives • Excellent presentation. Some comments: 1) “Being stopped from doing things”: consider the example of the decision to stop driving – the shared responsibility – person with dementia, physician, family, Dept of Motor Vehicles. It’s hard to take away without having some attractive alternatives. Unless dementia-friendly paratransit is developed, supported, accessible, affordable etc the topic of driving seems to be widely pushed aside. 2) Value of Family caregiver/care experience: Yes, I do highly value the family and person with dementia. However, let’s talk in terms of “partnership” among family, professional and pwd. Eg in studying wandering behaviour, caregivers reported on strategies to respond to wandering, one eg stated “I don’t have a problem with wandering, I sleep at the threshold of the front door and feel my wife step on me when she tries to get out” Another, “He takes the dog – and the dog knows the way home”. Another, “The police always bring him home”. Clients and professionals have a role in helping caregivers assess their strategies. 3) Interdependence – cg & prof. In a study I conducted several years ago on why caregivers did not follow through on professional recommendation on home adaptations, one variable which proved to be interesting (sample too small – n=40, I don’t recall sig). However, we looked at how ‘institutional’ the adaptation was – were caregivers less likely to try adaptation if it required a change in their environment? 4)Communication. Lawton’s Philadelphia Geriatric Affect Scale and Hindley/Volves assessment of PAIN in late stage dementia. (Helpful in looking at measurable mean in assessing communication). USA PROFESSIONAL

D. Identity/Continuity > Continuity with life story • Expectations that all fit into one mould (non-individuality, unavailability of specialist cultural resource to meet both the person with dementia and family need in relation to food, language, emotional support and ethnic resource.

A. Choices > 1. Sample narratives • Family members should be entitled to leave (so respite is essential). If family members are feeling strong physically, mentally and are trained (and not just experiment on PWD) they’ll make choices/decisions together with PWD. If this is not possible they shouldn’t be allowed to take decisions for the PWD unless it’s for his/her good, safety. Courts have to decide sometimes and protect PD when their human rights (incl. The right to decide) are abused. CAREGIVER POLAND

C. Love and Trust > Trusting relationships • Giving a safe, warm, friendly home environment, as we are their family in care, away from their own loved ones.

C. Love and Trust > 1. Sample narratives • Giving a safe, warm, friendly home environment, as we are their family in care, away from their own loved ones. Making sure all their daily needs are met and ensure any personal activities eg piano, knitting etc. are still encouraged. Every situation is different eg pain, illness etc. so these all need to be met at different levels. We need to be aware of cultural differences and meet these needs. Give them the opportunity to decide aspects of their daily living for themselves. Respect. Involving the family as much as possible not just with care, but in the nursing homes, home environment. Negative Disrespect to people who cannot help themselves, forcing your values, opinions. Making judgements, when we shouldn't. Deciding what's going to be no matter what. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Giving a safe, warm, friendly home environment, as we are their family in care, away from their own loved ones. Making sure all their daily needs are met and ensure any personal activities eg piano, knitting etc. are still encouraged. Every situation is different eg pain, illness etc. so these all need to be met at different levels. We need to be aware of cultural differences and meet these needs. Give them the opportunity to decide aspects of their daily living for themselves. Respect. Involving the family as much as possible not just with care, but in the nursing homes, home environment. Negative Disrespect to people who cannot help themselves, forcing your values, opinions. Making judgements, when we shouldn't. Deciding what's going to be no matter what. NEW ZEALAND PROFESSIONAL

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

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

F. Enjoyment > 1. Sample narratives • Have moments to look forward to in the week. Have things person in dementia can do with carer and others. Generate manageable tasks. Create new social networks of families who are affected and who share problems and possibilities. Lots of humour, including people who support people with dementia, and willingness to do “off the wall” activities and create a failure-free environment. Give opportunities for physical expression of memories – eg show how things work (like work tools), dance to time-appropriate music, sporting activities (judo example – 94 year old blackbelt with dementia), gardening. All the above involve sensory stimulation and recall of past activities which can be revisited with success. D PROFESSIONAL

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

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

C. Love and Trust > 2. Any other • I am a former caregiver. My mother had Alzheimer’s and I was looking after her together with my family at home. At first I made a lot of mistakes, because I didn’t have any knowledge or skills, so I had to rely on my imagination, empathy and intuition. But I am sure that even then my mother felt she was loved.

J. Basic Comforts > For specific complaints • I am not able to do the job that I did prior to diagnosis and this is something that I miss very much. I have a fixed income now and that is not what I had hoped for in my life. I am not allowed to drive. I had to move back home with my family. I am lucky to have a wonderful family and it is working out well, but I enjoyed owing my own apartment and being independent.

C. Love and Trust > 1. Sample narratives • I am not really familiar with Alzheimer’s but since a few months I’ve seen in a family what love does to a patient. The care and love is overwhelming and really does a lot. It also means a lot to the care giving family. As a doctor I recognise the importance of love through care. PROFESSIONAL Netherlands.

B. Relations/Communication > Inter-generational • I feel that being able to keep up contact with 'generations' is one way of promoting quality of life. I work in an 18 bed dementia rest home, band 3-4 and the one thing that used to be missing was visits from children of all ages - babies through to teenagers. Our residents vary between high functioning to quite low functioning but information generated from profiles has identified that they are all 'Grandparents'. The lack of children was denying our residents the opportunity to be grandparents. We are now lucky enough to have my son in the home, he has been coming since he was 4Yz weeks old and is now celebrating his 1st birthday next week. All of the residents have responded in a variety of ways, most many times a day. Our high function interact with him, push him around and sing songs to send him off to sleep. Our low functioning residents reach out towards him as he crawls past, or smile broadly when placed in their arms. As an added bonus my 5-year old joins us during the holidays and between them they give unconditional love by not seeing the dementia but a loving grandparent.

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

K. Supporting Caregivers > 1. Sample narratives • I live in Scotland, and care for my husband who is 78. He first showed symptoms in Jan 1995. My great difficulty then was getting the professionals to LISTEN to me – he presented so well, and was very good at ‘covering up’. Now, I know that my QOL is important and is directly linked with my husband’s QOL. When I am exhausted, depressed, emotionally-drained, suppressing my irritation and not being able to respond in the usual way to verbal abuse and false accusations I find it very difficult to be patient, tolerant and understanding. I now am very fortunate as my husband goes in for respite care every six weeks for 1-2 weeks and this gives me the chance to sleep, relax and do the things I am unable to do as a result of my husband’s condition. He has changed from a confident, capable outgoing person to become a nervous, frightened, agitated man who no longer reads, enjoys television or socialises and scarcely allows me out of his sight. L SCOTLAND CARER

K. Supporting Caregivers > 2. Any other • I now am very fortunate as my husband goes in for respite care every six weeks for 1-2 weeks and this gives me the chance to sleep, relax and do the things I am unable to do as a result of my husband’s condition.

B. Relations/Communication > 1. Sample narratives • I think studies like these are important, because they hopefully will lead to the promotion of quality of life improvement around the world. This will require the research results to be widely “advertised” so that governments will learn and understand what they should and could do. Of course this is also the role of Alzheimer’s associations to disseminate the results of such studies. Quality of life to me is having the chance of being treated as a human being and feel you are important to people you are with. I am a former caregiver. My mother had Alzheimer’s and I was looking after her together with my family at home. At first I made a lot of mistakes, because I didn’t have any knowledge or skills, so I had to rely on my imagination, empathy and intuition. But I am sure that even then my mother felt she was loved. I never treated her as a child. POLAND CAREGIVER

B. Relations/Communication > Partnered decisions • I think that both lives (mine and my main family supporter) have a very good quality of life. Both parties have had to make some changes and adaptations but all in all so far things are okay (without medications and my support network they would not be though. I would revert back to the extreme apathy that I had prior to treatment mixed with anger outbursts. The social withdrawal would return and I would not be pleasant to live with).

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

A. Choices > 1. Sample narratives • In a residential setting. Positive. Being able to voice/vent their feelings (as you and I can do), and not being made to feel that their reactions are on 'annoying' side effect of having dementia. Carrying on with activities that you enjoyed at home. Being 'flexible' in all aspects of a dementia patients life. There is no room for regimented routines. Follow only the routine the dementia patient finds comforting. Regular family visits. Regular outings. Stimulating visual/hands-on products. (Boredom is cruel). Negative 'Taking over' (by caregiver) be it choices/ending sentences/making all of your decisions for you when you still have the capacity to do it yourself. Not being listened to or taken seriously, because you are perceived to be 'non-compus- mentis'. Being forced into activities you have no interest in. Being 'told off like a naughty child by an uneducated carer. Being over-medicated and reduced to a 'zombie' like state. NEW ZEALAND PERSON WITH DEMENTIA

L. Strengthening Services > 1. Sample narratives • In Japan, we are still behind with regard to using public services. The situation is, if a person has dementia, it is difficult for them to be admitted to public facilities or hospitals. Some Japanese people hesitate to take advantage of the public facilities. In Japan, we need to focus more upon the needs of people with dementia and their family caregivers rather than the convenience of the care facilities. I would like to see on the website information about good care and the good services that are available and also information that will help people with dementia and their family to choose good care and good services. JAPAN

L. Strengthening Services > Access to services • Initial contact with GP is crucial to both carer and pwd. GP can alert a whole raft of professionals, groups, resources, who can support and work together with the family group affected by the diagnosis. The early stage is when the pwd has an opportunity to become the decision maker in the situation. Access to family therapy to work with the family system. Ongoing input is essential to assist the family to adjust to the changing structure and roles that will inevitably follow.

L. Strengthening Services > 2. Any other • Interaction from initial diagnosis to final stages of disease with same team of supports - eg geriatrician, Dr GP, educators, carers, careworkers, rest home with day care, respite care, full time care Stage III dementia facilities. Able to be accomplished in smaller towns and very beneficial. Maybe local AD support groups and rest home and primary coordinators of the total holistic interaction.

B. Relations/Communication > Connections • Involving the family as much as possible not just with care, but in the nursing homes, home environment.

H. Spirituality > 1. Sample narratives • I’m an outsider! I’ve no one in my family with Alzheimer’s but my mother in law has Alzheimer’s. I don’t make any decisions in the family. My experience is that God has made a radical change in the whole family. I’ve heard people talk about choice, coincidence, pure chance etc. I don’t believe that, I believe that God has a plan for all of us. The question I have is: What does God want to tell us with this disease? Does he want love, unification...or something else. I think God needs our hand to fulfill his plan. Let’s give love to everyone and love God in the first place and we will see answers!! ARUBA

B. Relations/Communication > Connections • Knowing my family are safe. Seeing my family frequently.

B. Relations/Communication > Understanding by others • Letting my friends and family know my limitations is a big help. It lets them help me without me feeling like an invalid. It lets them know how they can help me.

D. Identity/Continuity > Continuity with life story • 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.

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

D. Identity/Continuity > Continuity with life story • Music, photos, written personal history, video of family occasions which prompt positive memories and emotions

D. Identity/Continuity > Continuity with life story • Music, photos, written personal history, video of family occasions which prompt positive memories and emotions.

A. Choices > Safety,not overprotective • My family has let me maintain as much independence as possible.

K. Supporting Caregivers > 2. Any other • My family supporters get regular respite by way of me leaving to travel with friends or visit friends, or they travel for a week or so at a time for their holidays. This is a big help to our PWD/carer relationship.

D. Identity/Continuity > 1. Sample narratives • My role is in the rest home situation therefore largely with those in later stages of dementia. I provide activities. What I have observed is: QoL involves physical comfort i.e. excellent care which enhances the dignity of the person. Making sure that they maintain individualism. Respecting their possessions and who they were. Emotional well being - providing a serene environment. Not having radios blaring inappropriate music e.g. playing commercial radio - pop music to people who have always loved classical music. QoL involves finding out what the individual person has enjoyed in the past. Providing stimulating activities in moderation. Over stimulation often results in agitation as loud or inappropriate music also can do. Giving the person love in a gentle compassionate way when the dementia sufferer is receptive not to make the carers feel good about themselves. To be as far as possible in tune with the person's needs. NEW ZEALAND PROFESSIONAL

K. Supporting Caregivers > 2. Any other • Need to have more acknowledgement of need for ‘time out’. Have increased respite care hours at times suitable to the carer.

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?

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.

B. Relations/Communication > Support groups • Ongoing support for the person with dementia is so important. Often there are facilitated support groups for care-partners but not for the person with dementia. We have found the one on one respite time to be a real blessing as my respite carer knows just when to motiveate me to do more and when to help me to slow down. With her help I accomplish things I thought were beyond me forever. Australia Personwith dementia.

D. Identity/Continuity > Giving a person respect • 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. E2

B. Relations/Communication > Connections • Participating in group decisions. Making food for others. Inclusion if family occasions. Being near children. Walking group

L. Strengthening Services > 1. Sample narratives • Positive Acceptance of dementia by the caregiver. Being informed and aware about dementia. Kinship. Encouraging the person to take each day as it comes. Safety. Safe environment, if possible reformation of the interior to make it safe for someone who wonders. Encouragement to continue activities they have enjoyed so far. Understanding and awareness of people around you, neighbours, society as a whole. Less tension among family members, burden sharing. Respite for carer to balance fatigue of caring in severe stages. Group homes or day care at a community level. These should be small-unit personalised care - not custodial or supervisory. Understanding of accompanying illness (eg glaucoma, diabetes). Walk with the person with dementia into the twilight area with confidence and pride in the individual, in his/her spirit, personhood. Negative Denial of the condition of dementia. Displaying anger and frustration at the failing cognition. Lack of awareness about the severe stages of dementia. Hiding it from friend and neighbours. Withdrawal from life/living itself (being isolated - not being involved in any activities). JAPAN PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Positive Accepting where the person of dementia is at. Timely assessment – reassessment and assistance so that whole family is supported. Promoting independence and a positive characteristic - living. Maintaining prior cultural perspectives. Encouraging previous strengths. Appreciating the contribution a person with dementia makes. Resisting from 'testing' the person with dementia. More public awareness of the experience of dementia. Removing 'medicalisation' of dementia. Why does someone become a 'patient' on diagnosis? Professionals speaking to and listening to people with dementia, rather than concentrating on their carers. Negative Being impatient with the person - not giving them time to live life at their own pace. Not allowing independence to carry out usual daily routines. Withholding information on diagnosis/services - or not giving opportunity to continue accessing information. NZ PROFESSIONAL

L. Strengthening Services > 1. Sample narratives • Positive Acknowledgement of human rights for those having dementia. Enjoying being human through inclusion. Positive stimulation. Agencies/Carers/Public legislation working with families rather than for. Recognising a holistic view may be appropriate. Encouragement to work at own pace. Negative Overload of information. Taking away the dignity by lack of inclusion in decision making and doing for self. Changes instigated hurriedly and without inclusion. Facility unavailability in communities ie rooms in public buildings for dementia people to have time out when accessing public facilities. Loss of male role. Expectations that all fit into one mould (non-individuality, unavailability of specialist cultural resource to meet both the person with dementia and family need in relation to food, language, emotional support and ethnic resource. Lack of public education. NEW ZEALAND CAREGIVER

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

G. Creativity/Aesthetics > 1. Sample narratives • Positive Being taken outside. Walking outside with bare feet. Taken to the seaside. MOTHER NATURE as a spiritual dimension. Being offered flowers, the first autumn leaf, daffodils, lambs etc. Being taken outside at night to see the stars. Out in a boat. Reminiscing. Singing in the shower. New challenges. Keeping valued place in family. Being read to - old favourite stories, poetry, prayers, jokes and funny stories. Solitude - time alone. Painting. Ride a horse. Drive a tractor in a field. Work. Aromatherapy. Walking. Holidays, concerts, movies. Use the name - ask family - caregivers knowing who you were and are. Ice cream. Birthday cakes. Negative Loneliness. Too much choice. Noise overload. No clocks. No newspapers. No calendar. No touch. Playing silly games. Being kissed by strangers. Being played music you hate - eg classical or country and western. Not using persons name. Losing friends. Losing grandchildren. Losing pets. Corecting people. Aruging. Family not knowing carers names. Too many staff changes. NEW ZEALAND PROFESSIONAL

C. Love and Trust > 1. Sample narratives • Positive Caring, trained staff. Honesty. Empathy, Lots of love and physical contact (if appropriate - not all people like to be touched). Safe environment. Good communications. Choice. Good care plans for individual likes, dislikes and best way to handle or not handle each resident. Continuing activities previously done, for as long as possible. Continued family contact. Being treated as an individual. Negative Lack of training or caring in staff. Some people just treat it as a job and the residents as a name. Lack of communication. Lack of understanding. When senior staff, doctors, consultants etc don't listen to caregivers when a resident can't speak for themselves. We know these residents, in their present condition, better than anyone. NEW ZEALAND PROFESSIONAL

J. Basic Comforts > 1. Sample narratives • Positive Cholinesterase inhibitors. Carers who understand their history, Using antipsychotics sparingly. Having family carers who are there/visit. Having had earlier positive life experiences. Good physical health - vaccinations, BP control etc. Religiosity/strong sense of spirituality. Being physically near children. Adequate nutrition. Uninterrupted sleep. Sufficient finances to purchase good residential care. Being recognised. Not being depressed. Good eyesight/hearing. Living in a community/society that values the elderly. An empowered caregiver who chairs a care giving 'committee'. Doctors well trained in all aspects of dementia. Well-designed physical environment. In residential care sufficient and well trained caregivers. Being bathed in love. Physical touch. Able to express sexuality. Being safe. Participation in research trials (verbally). Regulatory systems which fail to reimburse appropriate during therapy. Negative Physical pain, physical illness, psychosis, excess sedation, side effect of medication - cholinergies - antipsychotics. Ageist society. Hurried hassled caregivers. No access to transport. Caregivers who make environment too safe, too risk free. Noisy, unstable environment eg blasting TV, bright lights. Caregiver who is physically unwell. Caregivers who impose their religions/world view on the person with dementia. Poorly trained doctors who feel little can be done and are reluctant to prescribe AChEls. Being given insufficient time to eat or not getting assistance if needed. Urinary or faecal incontinence. Lack of physical touch. Alcohol excess (past or current). Medicalization of dementia. NEW ZEALAND PROFESSIONAL

B. Relations/Communication > 1. Sample narratives • Positive Communication - ability to engage in meaningful, reciprocal communication (conversation, gesture, touch) enabling pleasure and communication of needs/wants/comments. Environment - safe, comfortable, home-like, rich social network, access to nature, travel, physical and emotional, enriching, stimulating, not stultifying. Health/happiness - physical and mental health, freedom from pain, restricted mobility, expression, psychosis. Quality of professional care - respectful, competent, comprehensive, consistent, appropriately targetted, humane, well-coordinated, medical, psychiatric, nursing etc ie multi-disciplinary. Quality of family care - multiple generations involved, free from undue stress/conflict, availability of regular daily loving care and acceptance, respect and valued place within the family. Personhood - feeling valued, loved, maintenance of dignity, intact sense of identity and self-esteem, ability to carry out work of some kind, ability to love. Negative Communication - sensory impairment, loss of ability to participate in communication effectively and pleasurably, being misunderstood, carer failing to take time/effort to optimise communication. Environment – inappropriately restrictive, uncomfortable, alien, boring. Health/happiness - pain, disability, sensory impairment, psychiatric disorder, high level emotional distress. Quality of professional care - disrespectful, dehumanising, ill-coordinated, inadequate in amount/skill level. Quality of family care - conflictual, disrespectful, abusive, burden rather than cherished. Personhood - loss of self-worth, personal identity, loss of ability to work, loss of ability to love, loss of dignity. NEW ZEALAND PROFESSIONAL

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

B. Relations/Communication > 1. Sample narratives • Positive Feeling they have real relationship with professional carer. Participation in normal social interaction eg respite does not necessarily mean separation from care partner. Opportunities for 2-3 couples to share dining, dancing, holidays together in a 'protected' environment or facilitated environment adds huge QoL for carer partner and PWD. Not only 'couples' - mothers, daughters. Sense of belonging/community. Able to give, to be thanked, sincerely, not patronisingly. If, as a professional, I can assist carers to improve their QoL by pursing more interest apart from care. If I contract to abide by PWD's decision after he/she tries a culturally appropriate activity of my suggestion. Negative Having "roles' often many - worker, provider, lover, decision maker taken away, absolved, usurped. Always having things done, be on receiving end, no sense of reciprocity. Pressure to accept service, intervention. Rushing, not active listening. AUSTRALIA PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Positive Freedom of choice and choice taken seriously by others in decision making. Treated as an adult. Treated as person with ability to contribute to care and decision making. Autonomy within safety or ? security. Independence as long as possible. Trust in carers. To be treated as if able to continue with same interests and activities as before diagnosis eg continue with same hobbies, outings etc. When entry into rest home - family member carer must be taken very seriously. Cultural needs met - even when changing. Not to be 'labelled' as someone with particular stages. Individualised care. Family member carers gently changing roles - not an immediate "take over' of old roles. Fun introduced and continued. Physical contact but not in an overbearing way - especially if physical contact was not part of life. Negative A "take over' of the persons rights by the caring people. A medicalised approach with disease process being the most important. Too much over- protection by everyone! Infantalisation. Too rapid a change of roles by family members - increases the loss. All too serious theory. Being made to do activities that you don't want to or would never have done in their lives. Family members input being ignored. Withdrawal of former friends. In rest home care - lack of encouragement for friends and families to visit and be involved. I love grounded theory and congratulate you on choosing this methodology - inducted from us all. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Positive Having education and knowledge of dementia. Investigation of the person's life story. Carers having understanding of the person's life story. The person with dementia having time to be understood. The person with dementia having time to understand. Having choice. Having familiar belonging around. Having opportunity to use personal skills. Having trust in caregiver. Having understanding from caregiver re need for own space eg quiet times. Having a sense of purpose. To receive and give love. Reading to the person who is bedbound. Music that the person enjoys. "Time out" for the carer and the person with dementia. Being given the opportunity to grieve. NEW ZEALAND CAREGIVER

I. Stimulation > 1. Sample narratives • Positive Having my own things around me. My dog. Knowing my family are safe. Seeing my family frequently. Routine. Sunshine. Fun, fun, laughter, humour, dancing, singing. Negative Not knowing where things/people are. Having to depend on someone else to do things for me. Too many things to do at the same time. If I couldn't see to read information. NEW ZEALAND PERSON WITH DEMENTIA

K. Supporting Caregivers > 1. Sample narratives • Positive Humour, and understanding that humour is more applicable when the person has dementia - compassionate but 'natural', 'everyday' humour. It works! Acknowledgement that (as a carer) you are doing your best, that sometimes what you say is not what you mean and to not hold it against you forever. Maintaining physical activity and socialisation for both the carer and the person with dementia. As part of a group or individually. Accepting that the carer is the person who needs to do the care plan, that the health professional can not dictate this just because the person is in care. Ensuring that the person in care is kept looking neat, tidy "as if the person is generally cared about and not scruffy, uncoordinated or in another persons clothes". For HC givers to know about what goes on for the carer - health wise, financially and socially - over and about the carer role. Negative Honesty from HC professionals, a seeming inability to cope with appropriate emotional responses -1 put this point first as, from a carers point of view, I saw the course ahead as a set of hurdles and not a straight line. A genuine desire to be 'part of the loop' with the person, the carer and the whole family - the contact being seen only as a professional encounter. Not being addressed in a condescending way - go to the person and the carer, we are not contagious. The unwillingness of some personnel - such as police - to be involved with people with dementia whom the carer is wanting and trying desperately to keep the person in their own home. I know they are busy but it is very uncorporative. NEW ZEALAND CAREGIVER

L. Strengthening Services > 1. Sample narratives • Positive Initial contact with GP is crucial to both carer and pwd. GP can alert a whole raft of professionals, groups, resources, who can support and work together with the family group affected by the diagnosis. The early stage is when the pwd has an opportunity to become the decision maker in the situation. Access to family therapy to work with the family system. Ongoing input is essential to assist the family to adjust to the changing structure and roles that will inevitably follow. Well planned use of respite care and care for the carer is an important as care for the pwd. Health Funding Systems that are designed to meet the needs of bureaucrats instead of consumers of health services. Without someone with knowledge of 'the system' it can be impossible to know how to access the health services that are available. NEW ZEALAND PROFESSIONAL

L. Strengthening Services > 1. Sample narratives • Positive Interaction from initial diagnosis to final stages of disease with same team of supports - eg geriatrician, Dr GP, educators, carers, careworkers, rest home with day care, respite care, full time care Stage III dementia facilities. Able to be accomplished in smaller NZ towns and very beneficial. Maybe local AD support groups and rest home and primary coordinators of the total holistic interaction. Negative Lack of staff (in Rest Home Situations) education in dementia in NZ eg practical help and activities available for individual cases if they arise. This applies especially to the smaller rural communities where it is expensive to get people to come and educate dementia staff. Theories are great but not always practical when you are working in a 'hands on' situation. (Tutors, teachers etc are often people who have not had practical experience). NEW ZEALAND PROFESSIONAL

I. Stimulation > 1. Sample narratives • Positive Mental stimulation, enjoying mental stimulation, social interaction, acceptance, touch, knowledge of being loved, enjoying friendship, enjoying physical activity even limited), retaining dignity (being treated with dignity) creating involvement in crafts, music, arts), giving, fun, making choices, personal space, silence. Negative Lack of dignity (being treated as a child), talking down to not with. Not presented with opportunity for mental stimulation when you can't assess it yourself. Not being given the opportunity to listen to music that they enjoy when they can't access it themselves. Not being given the opportunity to say no or refuse ie making a choice. NEW ZEALAND PROFESSIONAL

F. Enjoyment > 1. Sample narratives • Positive Need to feel secure in home environment and yet can have some control over personal activities and/or outings. Need to laugh or make a joke of the little mistakes. Even when help is needed with buttons of zips etc. Socialisation with groups where they are accepted as they are. Good communication and physical touching, hugging most important. Lots of laughter helps any situation. Value and explore the long term memory often. Negative Decreasing QOL when people/visitors ignore the person and talk to family as though person completely incapable of thought of speech. NEW ZEALAND CAREGIVER

F. Enjoyment > 1. Sample narratives • Positive Relaxed, unstructured routines except meals. Freedom to walk around in a safe environment. Showing love and acceptance. Supporting caregivers. Role modelling expected care. Plenty of food and fluids available. Music playing and a homely environment. Regular family support meetings. Close relationship with families of residents and involvement in careplanning. Spending time with clients, talking about their past, ie profession, travel, etc. Respecting family members who are grieving for the loss of their loved one to this illness. Lots of humour ie staff dressing up in themes. Engaging in short conversations with residents who don't actually make sense, chatting with them makes them feel respected and 'normal'. Negative Expecting individuals to 'behave themselves'. Tired caregivers trying to rush to achieve their workload. Poor training of caregivers. No available dementia training for caregivers. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Positive Reminiscing tools - tools of trade, child times, school days etc. Family life. What they thought of life. Negative Not having an individual programme to meet the needs of that one person. Not taking the time to hear their story. Not taking the time to let them choose what they want to wear or go and do. NEW ZEALAND CAREGIVER

A. Choices > 1. Sample narratives • Positive Routine. Same things happening at the same time everyday. Remaining in a familiar environment with familiar people. Risk taking. A carer who can allow autonomy by minimising the risk and maximising choice. Recognition by family that there are changes due to dementia. Negative Other people unable or unwilling to accept or not able to cope with redirecting. Rejection by community in particular a community of friends themselves ageing who feel that they are no longer able to cope with having a person with dementia in their midst. The community imposing options for care - respite in a rest home without discussion and day care that did not meet the needs of the person with dementia. When providing care such as respite it is sometimes difficult to tell whose needs are being met. The same could be said for the decision to place permanently in a rest home. NEW ZEALAND PROFESSIONAL

E. Self Esteem > 1. Sample narratives • Positive Security arid-continuity in daily life. Continue to do tasks voluntarily and suggested for as long as possible eg making a pot of tea, feeding the cat, doing the crossword. Trust in caregiver - caregiver must be friend and enabler and consistent. Recognise that the person (with disease) likes to 'do own thing' in their own home eg chopping wood is relatively dangerous but is important for a person's quality of life - if this is the contribution they want to make. Social interaction of an adult if that is what person is used to - day care and boring activities don't suit everybody - though they may convenient for carer. Recognise what doesn't work for persons benefit - don't continue. Don't make persons life more foggy and unnecessary drab. Walking – let them go as long as you are aware where the are going. NEW ZEALAND CAREGIVER

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

A. Choices > 1. Sample narratives • Positive Touch, sound - music, safety/security, quality care of needs, decision making encouraged, connectedness to family maintained, autonomy supported. Negative Treated as disease rather than individual. Cost cutting affecting care/need/activity. Restrictions/restraint. Belittled. Taking away choices - decision making. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Positive Treated with dignity - accepted of who they are - in spite of their progression of disease. Knowing that someone cares and accepts them - who will take time to explore community and enable them to explore participation to enable them to participate within their community. Being heard and enabled to participate or just be as they want to - to have a choice, take time to develop relationships and stay there till no longer required - by client or caregiver. Work alongside them till able to adjust/accept that no longer able to manager on own safely - being aware of safety v autonomy. To have fun, a giggle, even if unable to verbally communicate can still enjoy things. Maintain interests/interactions, even adapt them so can still participate in family - continue with sense of belonging. They are still unique people - in spite of dementia. Safety in the home - awareness of needs there if other medical problems or sensory impairment. Treated as unique individual persons and adjust to their uniqueness, their physical, mental and spiritual dimensions. Negative. Over-stimulation, fatigue not noticed by caregivers or not understood. Doing things or made to do things they do not want to do and have no interest in. Inappropriate environment - where misinterprets things. Frequent changes of environment. People with dementia respond to the emotional context and if someone does not care pick it up quickly - or in a hurry then behaviour changes. Being controlled. People not taking time to adjust to the individuals (pwd) needs - expecting them to fit into a mould - when they have their past life stories. Social isolation and neglect. NEW ZEALAND PROFESSIONAL

A. Choices > 1. Sample narratives • Positive Trust in caregiver "getting to know' the person that they are. Person with dementia has the choice. Involvement of the dementia person. A person with dementia should be respected. Listen to what the dementia person wants. Give the person with dementia freedom. Environment to suite the dementia stage. Privacy. Family and staff education. Within care family - need of more time on individual basis. I am not a child. I have inner essence of me. Negative Being told what to do. Not given choice. As a carer, I find you must not tell the person with dementia what, when to do if they do not wish to. NEW ZEALAND CAREGIVER

A. Choices > 1. Sample narratives • Positive Trust in caregiver "getting to know' the person that they are. Person with dementia has the choice. Involvement of the dementia person. A person with dementia should be respected. Listen to what the dementia person wants. Give the person with dementia freedom. Environment to suite the dementia stage. Privacy. Family and staff education. Within care family - need of more time on individual basis. I am not a child. I have inner essence of me. Negative Being told what to do. Not given choice. As a carer, I find you must not tell the person with dementia what, when to do if they do not wish to. NEW ZEALAND CAREGIVER

A. Choices > 1. Sample narratives • Positive Caring carer. Stay as long as possible in own home. Supportive family. Keep to routine (as it was) as much as possible. Allow the person to make decisions. Allow choice. Continue to be loved and cherished. Respect. To be themselves. Accept challenging behaviour. To allow independence for as long as able. To be an individual. To allow to express own feelings. To plan own path way. Listen to the music not the words. Allow risks. Support groups including PWD. Alzheimer's Society, community support workers. Conferences. Negative Over protection, taking away independence, overwatched, decisions made for me (pwd) eg food, time planning, what to wear, where to go. Treated like a child. Not treated like before. Having a stressful carer. Thinking about how the spouse of an older age is going to manage. Enjoying fun and laughter but not at time at the appropriate time and not being accepted for this. I've got a client who does this and family (not being accepted) are horrified. NEW ZEALAND PROFESSIONAL

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

B. Relations/Communication > 1. Sample narratives • Positive I feel that being able to keep up contact with 'generations' is one way of promoting quality of life. I work in an 18 bed dementia rest home, band 3-4 and the one thing that used to be missing was visits from children of all ages - babies through to teenagers. Our residents vary between high functioning to quite low functioning but information generated from profiles has identified that they are all 'Grandparents'. The lack of children was denying our residents the opportunity to be grandparents. We are now lucky enough to have my son in the home, he has been coming since he was 4 weeks old and is now celebrating his 1st birthday next week. All of the residents have responded in a variety of ways, most many times a day. Our high function interact with him, push him around and sing songs to send him off to sleep. Our low functioning residents reach out towards him as he crawls past, or smile broadly when placed in their arms. As an added bonus my 5-year old joins us during the holidays and between them they give unconditional love by not seeing the dementia but a loving grandparent. Negative A breakdown in teamwork leaves the continuing core disjointed with no flow of routine. The resident then doesn't know whether they are coming of going which causes challenging behaviours to come to the surfce. NEW ZEALAND PROFESSIONAL

B. Relations/Communication > 1. Sample narratives • Positive Opposite of negative. Negative New acceptance of person as they are. Judgmental attitudes. Insecurity. Attitude (poor). Instability. Lack of belonging. Lack of choice. No close relationships (a) family; (b) friends; (c) professionals. Lack of cultural respect. Lack of history interest (past). Lack of social circumstances. Lack of finances. Lack of information (appropriate and timely). Poor diagnostic techniques. Lack of early intervention. No individual entered care. Over protectiveness. No promotion of independence. Family taking over too soon (decisions, risks etc.) Poor unstimulating environment. Lack of investigating other medical issues(holistic). Poor attitudes to the aged in general (professionals/public). Lack of public awareness and understanding. Refusal to carry on life as "normal as possible". Lack of humour. Treatment as a child. Enforcement into activities. Lack of sensible risk taking. Non-acceptance of past roles/status etc. Poor communication techniques (verbal/non-verbal) alternative ways etc. Lack of creative measures in coping with the illness and behaviours. Poor opportunity to express feelings. Lack of empathy-compassion. Lack of physical contact appropriate). Failure to understand sexuality issues (esp. by professionals/residential care facilities). Failure to encourage personal interests (past and new). Failure to recognise fears. Inappropriate locking of facilities for dementia people (not only wanderers). Failure to recognize male/female differences. Lack of social normality (hairdressers, coffee shops etc.) No/poor use of translators. Limited facilities (culturally/socially appropriate). Limited appropriate resources. AUSTRALIA PROFESSIONAL

L. Strengthening Services > 1. Sample narratives • Positive Views gained in formal care settings. Appropriate and adequate one to one time with people - including carers and others. Health problems recognised, fully identified and treated promptly and appropriately. Being considered a whole, worthwhile person especially in relation to food, equipment, medication and other resources. Communication for family with educational and supportive information and encouragement and understanding. Negative Lack of recognition of 'rights' to ie treatment. Over-crowding. Limiting of autonomy in choice. Lack of commitment by carers. Lack of education of carers and families. NEW ZEALAND PROFESSIONAL

J. Basic Comforts > 1. Sample narratives • Positive Work with care givers on nutrition education to enable them to offer appropriate foods with nutritional adequacy over the progression of the disease. Work with care givers to encourage eating environment/equipment that the client can easily manager eg beaker feeding cups, foods provided which can be easily eaten with fingers. Provide commercially produced liquid nutritional supplements for clients unable to prepare or eat normal meals (with government subsidies). Provide safe food preparation environments – install smoke alarms attached to remote control monitoring centres (funded by the government). Improve the education of health professionals working with dementia clients through workshops which include carers and sufferers. This will aim at improving health professionals ability to improve the overall QOL for dementia sufferers. Improved education for General Practitioners to assist in earlier diagnosis of Alzheimer's disease. Direct some Alzheimer's awareness programmes at school children - this will help to improve the understanding of this group of society and encourage better communication with relatives, family friends with AD. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Positive. Involve family/main carer in all aspects at care planning. Have staff hear the family's story and include the detail into persons life in a care facility. Include carer and family in facility life. Arrange facility activities around person and family life eg celebrate wedding anniversary in the facility. Identify key QOL scale points and have this as part of on-going assessment of person. For person at home - enable carer to be assessed to identify illness but also provide opportunity to discuss any concerns/symptoms they may have. Appropriate touching by staff - all kinds of touching by family/friends. Offer to include extended family in 'support group' or similar. Heir/sibling need is often overlooked - to be involved in discussion on how to 'help'. Allow individualisation - at all levels - home and in care. Negative Carer not able to complain about poor quality of life services. Do not know how. Not feel welcome to raise concerns. Afraid their family member may be treated badly as a result. Physical abuse by carers - family and care staff. Insufficient time given to positive, individualised activities in residential care. NEW ZEALAND PROFESSIONAL

G. Creativity/Aesthetics > Opportunity to grow • Presented with opportunity for mental stimulation when you can't access it yourself. Being given the opportunity to listen to music that they enjoy when they can't access it themselves.

I. Stimulation > Moderation • Providing stimulating activities in moderation. Over stimulation often results in agitation as loud or inappropriate music also can do.

K. Supporting Caregivers > Appreciation and care • 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.

D. Identity/Continuity > Continuity with life story • Reminiscing tools - tools of trade, child times, school days etc. Family life. What they thought of life.

D. Identity/Continuity > Giving a person respect • Respect from family and community.

K. Supporting Caregivers > Respect • Respecting family members who are grieving for the loss of their loved one to this illness.

G. Creativity/Aesthetics > Activities • Sufficient opportunities for carer to have time out for rest/refresh.

D. Identity/Continuity > 1. Sample narratives • Support a PWD plan "their" lives with the support of family of friends. Everybody's stories must be listened to - all have different needs - background - cultural and spiritual etc. Set up "Bubby" friendships. A person who will assist with decision making - sharing. Have fun, talk with and laugh with a PWD. Let PWD sit in the "drivers" seat. Don't take over their lives. What hinders Feeling alone - no family - community support. Being over protective and controlling. NEW ZEALAND PROFESSIONAL

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

B. Relations/Communication > Support groups • The suppport of wife and family and friends. The information and support I get from computer supports such as DASNI and AD friends, Support from the local Alzheimer's Association and my church. Due to their support and encouragement I am able to carry on day by day, really…moment by moment. The support of others with dementia really helps me a lot.

L. Strengthening Services > 2. Any other • Timely assessment - reassessment and assistance so that whole family is supported.

B. Relations/Communication > Connections • Too rapid a change of roles by family members - increases the loss.

D. Identity/Continuity > 1. Sample narratives • Treating each person with dignity. Spend quality time with person. Endeavour to include people in decision-making/at their level. Regard each person as spiritual being (not necessarily religious) and valuing each one's personhood. Listen, really listen to them. Work with them according to the skills they still have. Good physical care, tidy, clean clothing, tidy hair. Holistic care, physical, spiritual, mental. Don't take away all the opportunities to do things - to take an initiative. Sufficient opportunities for carer to have time out for rest/refresh. Have fun-time, for laughs. Physical touch/where appropriate. Encourage memory times, what they do remember is important. NEW ZEALAND PROFESSIONAL

C. Love and Trust > Trusting relationships • Trust is a very important thing to the 'patients' and should be maintained all the way through the illness. May not be the closest family carer as the 'patient' quite often turns against them. Could be chosen by the 'patient' themselves early in their illness.

C. Love and Trust > 1. Sample narratives • Trust is a very important thing to the 'patients' and should be maintained all the way through the illness. May not be the closest family carer as the 'patient' quite often turns against them. Could be chosen by the 'patient' themselves early in their illness. Security can be made by the carer without any loss of dignity or anger by being careful that the reason for the security or safety is done in such a way that the 'patient' know they are loved and want them to be safe. I have found that to tell my husband he couldn't drive any more was very hard until I asked a traffic officer to have a talk to him. This man know all about my husband and was a friend and make him understand in a friendly and caring way that he was afraid of him hurting himself or others. NEW ZEALAND CAREGIVER

C. Love and Trust > Trusting relationships • Trusted person may be chosen and not be a member of the family: As I work, I have a carer coming to help mum for some of the time I am away. She feels safe and secure with mum and whom she has named Jane. Mum treats 'Jane' as part of the family and welcoming when she arrives. At times she wil get angry ans verbally aggressive with her as she does with me.

B. Relations/Communication > Partnered decisions • We both benefit if my caregiver enables me to be as independent as possible and helps me maintain my sense of self-identity. My spirits improve and so do his. A number of aspects of quality of life are the same for us, that is, parallel, i.e. if he enables me, we both improve.

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

D. Identity/Continuity > 1. Sample narratives • What has happened that has decreased my quality of life as a person with dementia I am not able to do the job that I did prior to diagnosis and this is something that I miss very much. I have a fixed income now and that is not what I had hoped for in my life. I am not allowed to drive. I had to move back home with my family. I am lucky to have a wonderful family and it is working out well, but I enjoyed owing my own apartment and being independent. CANADA PERSON WITH DEMENTIA

D. Identity/Continuity > 1. Sample narratives • What has happened that has decreased my quality of life as a person with dementia. I have lost many of my previous capabilities; I had been an organiser, trained nurse and have had the responsibility to manage our family finances all my married life. As well as the diminish of a previously high I.Q. (148 down to now 112) and the loss of short-term memory (at school they questioned a photographic memory but realised that oral recall was as great as written) I have significant loss in the spatial and numerical areas and these have affected activities such as dressmaking and bookkeeping. In the past I made wedding dresses, iced wedding cakes and organised weddings. Now I need help to make a simple garment such as tack pants. Not only have I lost the ability to keep track of our finances, I frequently forget to pay bills unless I put them onto the computer as soon as they arrive. We have attempted to overcome this by my husband taking over some of these activities then remembered why I did them in the first place! He has always had a very poor memory and capacity with numbers. Loss of respect for my advice and opinions in some areas and by some people. I enjoy helping people and this has been an important part of 'who I am'. Now they are not sure if they should ask for help or what kind of help they will get! I am not as confident either in what I would offer. Lack of understanding of early stage dementia by some medical personnel has lead to some unfortunate experiences. Firstly with a doctor, which resulted in my medications being cut off for a period and the necessity to change doctors and re-establish on medications, then with a series of incidents in a hospital that have left me scared to be admitted even when necessary for other reasons. I have always been quite independent with travel, often driving thousands of kilometres alone, to get where I wanted to go. Now because of my confusion, I can easily get lost, and my problems in depth perception, which made it difficult judging distances when driving, I have given up my license and can no longer have complete 'time out' when it is just me and no one else around. This applies also within the home where I can't be left to do things unattended as I have been known to leave the stove going and boil things dry, leave the iron on its face, taps running, doors unlocked and other things which can be a danger to myself and others. I have always loved reading but find it hard to concentrate and often mis-read word so that what I read fails to make sense. I need help with things I am writing e.g. this answer to your question to keep me on track and not saying the same things over and again The need to leave our home and move into a retirement village for my care and so we are 'under the microscope' so to speak ----------------------------------------- AUSTRALIA PERSON WITH DEMENTIA

B. Relations/Communication > 1. Sample narratives • What has happened that has decreased my quality of life as a person with dementia? Driving, the ability to join into intelligent conversations or discussions without the fear of word power or slowness. A job but most of all it is hard for my family to see me in a different light but they try very hard. HAWAII PERSON WITH DEMENTIA

K. Supporting Caregivers > 1. Sample narratives • What has helped people with dementia? Having strong advocacy groups to speak on their behalf and people who can make changes. Allow people to ‘be’ themselves – carers listen to families. What things practically have helped carers of people with dementia? Carer support website. Carer training programme. Need to have more acknowledgement of need for ‘time out’. Have increased respite care hours at times suitable to the carer. Assurance there will be monitoring at residential services – an ear for team. L PROFESSIONAL NEW ZEALAND

B. Relations/Communication > 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 both benefit if my caregiver enables me to be as independent as possible and helps me maintain my sense of self-identity. My spirits improve and so do his. A number of aspects of quality of life are the same for us, that is, parallel, i.e. if he enables me, we both improve. CANADA PERSON WITH DEMENTIA

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

B. Relations/Communication > 1. Sample narratives • What I think is the relationship between my quality of life and the quality of life of my main family supporter? I am the main breadwinner here. My husband does not make as much as me. Our quality of life has decreased as I progress through this disease. We never expected this to happen when I was 40 years old. We thought we would have many more years together to see and do all the things we wanted too, together. We are not able to do many of the things we wanted as my income decreased 35%. USA PERSON WITH DEMENTIA

B. Relations/Communication > 1. Sample narratives • What I think is the relationship between my quality of life and the quality of life of my main family supporter? My care partner and I are still totally separate accounts for everything although he helps me out of situations too hard for me. He is a longtime boyfriend and has had a rude awakening but is proud of my functioning skills so when I do something without common sense he has a hard time with it. HAWAII PERSON WITH DEMENTIA

A. Choices > 1. Sample narratives • What makes it worse: Talk over/around/down to a person. Poor physical care, diet. Over/inappropriate medication. Restrictive attitudes. Being regimented in daily routine/individuality still applies. Do not assume we know what they are thinking. Public perception and understanding. Lack of education and experience. Denial of wider family and friends of situation. NEW ZEALAND PROFESSIONAL

A. Choices > 1. Sample narratives • What practical help has been of use to me in maintaining or improving my quality of life as a person with dementia. My support groups both on-line and in person. Letting my friends and family know my limitations is a big help. It lets them help me without me feeling like an invalid. It lets them know how they can help me. My family has let me maintain as much independence as possible. My doctor works with me as a team and I have a say in my care plan -I feel more in control of my life this way. CANADA PERSON WITH DEMENTIA

B. Relations/Communication > 1. Sample narratives • What practical help has been of use to me in maintaining or improving my quality of life as a person with dementia? Education, understanding and support from Alzheimer's Association. Living with memory loss group and ongoing support group Support, education and encouragement from fellow DASN members Respite care for me to give my husband time out and enable him to better cope with caring for me Assistance from my respite carer with projects such as enabling me to sew again with her assistance as needed Financial assistance from our Government e.g. my husband receives a carer's pension to look after me Subsidisation of my medications Ladies club at our Respite house weekly with suitable activities Planning devices so I know what is happening, what needs to be done and how to do it so I can participate with some degree of confidence Sharing with others who have similar experiences and helpful suggestions of ways they have found effective in the same or similar situations. 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

K. Supporting Caregivers > Appreciation and care • When she feels good, it helps me to feel better. When she is stress free, it helps me be more calm. My wife and caregiver also illnesses that require much from her and others, however she is an excellent caregiver and wife. What affects my caregiver affects me and what affects me affects her. At times I think I'm on a merry go arround. A quiet conident, unhurried, giving because she wants to assist me with my quality of life immensely. This goes for all of those that have to do with me.

K. Supporting Caregivers > 1. Sample narratives • Working directly with individuals affected by the disease, family carers, professional carers, students, nursing home staff etc. Support Group for early stage individual - we meet weekly, talk, share, coffee/cake, reminisce, talk about what it feels like, fears, joys, hopes etc. “Poetry writing”. Activity Group for these individuals - singing, dancing, exercises etc. family members join the group 1 x monthly. They get to see their loved ones having fun and meet other carers to form ongoing relationships. What has helped carers - providing respite by involving their family members with these activities; - getting reports from staff of all the positives of their family member. The workshop was very positive, confirming, stimulating. Very clearly tied things together, made new links. L CANADA PROFESSIONAL

K. Supporting Caregivers > Respect • • Welcoming environment/no restrictions. Feel part of the team. Involved in decision making. Using facility for family functions.