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F. Enjoyment > 2. Any other • - being enabled to have fun and do life-enhancing activities and social interaction

J. Basic Comforts > For specific complaints • - decreased reading, comprehension, driving and cooking skills; - decreased tolerance and enjoyment of cultural activities, travel, entertainment, social interaction; - decreased flexibility in thinking, therefore poorer problem solving. - frustrations from memory difficulties, losing things, language problems, etc. - shift in relationship between me and my spouse - he is more care-giver than equal; a lot of our activities together are determined by my decreased abilities and decreased tolerance and energy - we have had to make more fun and enjoyment with less.

C. Love and Trust > Valued role • - maintaining a sense of self-identity and value to others with peer support groups and social interactions and volunteer work.

E. Self Esteem > Failure free activities • . Social activities that I feel comfortable with, being able to live at my comfort level, things around me that I am comfortable with and that I recognize,

D. Identity/Continuity > 1. Sample narratives • . What do you think makes up quality of life is for people with dementia? Quality of life is being able to get the most out of each day. For me as a person with dementia, this is enabled by the medication therapy I am on as well as my support network of family, friends and persons I associate with at Alzheimer’s Associations. I think that quality of life after diagnosis can depend on how you managed your life before diagnosis. If you were a person who was inquisitive and eager to learn and generally happy, then you will probably do better than a person who was more apt to let life pass them by and be a depressed type. CANADA PERSON WITH DEMENTIA

F. Enjoyment > 1. Sample narratives • . What improves quality of life: - being enabled to maintain independence to the degree possible; - being enabled to have fun and do life-enhancing activities and social interaction; - maintainance of a strong and positive self-image. CANADA PERSON WITH DEMENTIA

C. Love and Trust > 1. Sample narratives • 1. Much depends on the quality of relationship prior to illness. 2. Communicating in new ways that suit both carer and person with dementia. 3. Just like ‘normal’ relationship, both parties need space and time to do own things. 4. Human love is transcendent.

G. Creativity/Aesthetics > 1. Sample narratives • 1. What makes up quality of life is for people with dementia? It all has to start with acceptance then comes coping skills, healthy eating exercises, I believe in Vitamin E,C B6 B12 folic acid and exelon and Nameda. My doctor and I believe my weekly lectures, travels for AD and writing the book kept my brain active. This is not to say the daily living is not a struggle but it gives me quality of life by having something special to share with people who would not alone understand. Being frail and in bed with a full time care partner. HAWAII PERSON WITH DEMENTIA

C. Love and Trust > Love • 10 years ago I enjoyed life – didn’t know what comes tomorrow. I was mostly away, I lived the life of a macho man. She does education, does finance. I enjoyed life with my friends. Now we share a concept of life – like what Mother Theresa did. My friends from 10 years ago are looking at me as a strange guy. For me there is only one word for quality of life – love.

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

G. Creativity/Aesthetics > Activities • Activity groups such as day clubs that cater for our need and interests at a level where we can participate and achieve.

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

E. Self Esteem > Reduce stigma • Avoid feeling embarrassed in front of others, or family, friends being embarrassed by some behaviours, for example.

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.

B. Relations/Communication > Connections • Avoid sharing support person. I'd discovered that if I talked to care giver - other than the normal hello's, that this created a tension - it took away from our relationship. Needed own relationships outside partner.

J. Basic Comforts > Individual care plans • Beginning evidence that positive relationship can alter neurological (neuroendocrine responses) may protect or decrease some progression.

B. Relations/Communication > 1. Sample narratives • Comment: treating person as human being with compromised neurological ability. Can communicate and do non verbally. Important quality good relationship NB interaction with others (positive, supportive carer, authorities). Beginning evidence that positive relationship can alter neurological (neuroendocrine responses) may protect or decrease some progression. Emotional memory NB. NORTH AMERICA PROFESSIONAL

L. Strengthening Services > 2. Any other • Consistency of care when support is required from support agencies, medical professionals, social activities.

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.

A. Choices > Allow coping • Cope with losing friends. Losing grandchildren. Losing pets.

B. Relations/Communication > Support groups • Create new social networks of families who are affected and who share problems and possibilities.

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 > Quality time • Do things together each day. One on one. Sharing feels, fun. Singing together. Time to be understood. Time to understand. Have a book for activities you are doing together.

I. Stimulation > Context • Environment - safe, comfortable, home-like, rich social network, access to nature, travel, physical and emotional, enriching, stimulating, not stultifying.

B. Relations/Communication > Understanding by others • 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.

D. Identity/Continuity > 1. Sample narratives • For others to have an understanding of what is being experienced by the person with dementia. That behaviour is not seen as being 'naughty', it is identified for what the person is feeling at the time. Unconditional respect. Not to be kept in own home longer than should just because social agenda is that life in your own home is preferable. Not being forced to participate when prior to dementia onset person did not enjoy participation. Creation of activities for activity sake so person with dementia is being 'entertained' is restricted. Approach to life kept 'as normal' as possible - maintenance of routine for that person. NEW ZEALAND PROFESSIONAL

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

L. Strengthening Services > Advocacy • Having strong advocacy groups to speak on their behalf and people who can make changes.

K. Supporting Caregivers > Information • Helping carers with education groups which in turn helps person with dementia.

E. Self Esteem > 1. Sample narratives • Holistic, multidisciplinary care essential. We view carers and those with Alzheimer’s as “a package”. If you concentrate on self esteem (for all concerned) everything else falls into place. I agree about humour. In an out-patient block our rooms are the only ones where laughter comes from. It does however cause colleague prejudice – how can you laugh and take your work seriously??? We have more carer groups/meetings where carers and patients can go together and socialise. 4 week sessions lead to families contriving the groups autonomously. I love your mention of spirituality, I have believed this to be very important always (I’m a Celt). There have been times when professionals have felt this area to be too ‘unscientific’ to be valued. Choice works always, for everyone. Multidisciplinary teams must spend time to feel comfortable together, because out of team strength comes the confidence to take/share risk. I have begun to encounter sexual problems more frequently (usually impotence) and addressing that improves self esteem/life. The region I work in is very conservative in attitude, I thought the workshop inspiring – someone else thinks/feels like me! I UK 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

D. Identity/Continuity > 1. Sample narratives • I appreciate your workshop. Quality of life is also to let people with dementia to speak about themselves at the early stage of the disease and let us know what is QOL for them. Developing these support groups seems very important. Not speaking of them but with them. FRANCE CARER

K. Supporting Caregivers > 1. Sample narratives • I educate social workers. I used to work caring for elderly people. It was explained in one of the presentations today that the QOL of a person with dementia and the QOL of caregivers are interdependent. I do agree with this. However, in real life, the QOL of a person with dementia and the QOL of caregivers are often considered to conflict with each other. Especially when support is difficult, both professional trained workers and caregivers tend to consider this as a conflict. For the future agenda, I would be grateful if you could include the method of intervention to make people aware of the fact that the QOL of a person with dementia and the QOL of caregivers are interdependent. PROFESSIONAL

B. Relations/Communication > Connections • I get emails and IM from family, grandkids and friend which helps me to know I am not alone in this disease.

L. Strengthening Services > 1. Sample narratives • I started working as a care worker when I was 17 years old. I am now 23 years old. I only have 4 years’ experience. I like a passionate person very much. Today, I was so impressed and overwhelmed by the importance of every word at this conference. After a few years of experience, I think the users are like mirrors for the care workers. They reflect everything to me. It is only natural, as they have been living longer than us. Only they know how they feel being demented. I also realized that Japan is very behind. Furthermore, in my opinion, Japanese people are cold and reluctant to participate. I would like care workers’ social standing to be higher. I think people think highly of this job… I would like to join in as a pioneer rather than being a witness of the time. Let’s try to broaden the choices of the users. PROFESSIONAL JAPAN

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 very independent, very happy. All these qualities attracted him to me, now I’ve changed. We had a great intimacy before we developed the illness. Need new ways of communicating. How to do that dance better? Was even tempered, now I flare up or I cry. It makes me mad when he doesn’t listen to me. My daughters’ lost their father in 1988 when they were 12 and 15. When this happened they were terrified of losing me – lots of denial going on. - You’re not trying hard enough. - Just exercise your brain. Eventually they came around – they do most of the work, I participate. They shield me. Communication is the key to maintaining a good relationship. Patience, patience and more patience. Learn different techniques. I’m angry he’s not listening – what’s it going to be like in 5 years. Humour, generosity, set limits on behaviour. Find a physical intimacy that works for both sides. CANADA PERSON WITH DEMENTIA

D. Identity/Continuity > Giving a person respect • I've heard 'many' PWDs state they have been disgusted at the regularity of people feeling they can cut social and emotional corners so to speak, in their dealings with people with dementia.

D. Identity/Continuity > 1. Sample narratives • Improves Anything that helps improve memory, thinking eg reminders, cues, medication. Not being confronted or embarrassed by errors. Continuing respect for the individual as the individual they are and were. Tolerance by other people for angry outbursts are episodes of frustration over things they can no longer do. Continuing to do as much of the things they used to do – for as long as possible. Being allowed to do things slowly. Keeping active and maximising activity for as long as physically positive. Decreases Presumption of ability or of being invalid once diagnosis is made. Over- protection. Not being able to continue with hobbies but also being forced to continue with activities when no longer able to do these or finding these a struggle. Being forced to be alone when they feel more secure in the company of others. AUSTRALIA PROFESSIONAL

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 • Keep them involved in things out in the community for as long as possible.

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

B. Relations/Communication > Connections • Make your friends their friends. Most of their own might not come around anymore, especially when they had retired a long time ago.

B. Relations/Communication > Keep communicating • may communicate in single words like love/lovely/mention name. Food - enjoys her food, may respond to certain types of food eg sweets - response may be "mmm." Massage - useful means of communication and maintaining social environment.

H. Spirituality > Special ceremonies • Meditated by family, friends and staff.

K. Supporting Caregivers > 1. Sample narratives • My concern today is the presumption that the partner wants to be a caregiver. If the previous relationship had been marked by tension, conflict or grievance, there may be no love or feeling of care. Indeed the prospect of worst conflict (violence?) may grow. Where/how is choice managed then? What is QOL? UK PROFESSIONAL

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.

B. Relations/Communication > Support groups • My mother now goes twice a week to an Alzheimer group where she participates in games and has good social interaction with those other people there.

D. Identity/Continuity > Continuity with life story • My mother was a very intelligent woman who, when she realised that her dementia was getting worse, I found comfort for us both in constantly reinforcing her love of reading poetry (she was a poet) and her desire to go to concerts, social functions etc.

E. Self Esteem > 1. Sample narratives • My son was 16 when he volunteered to work in an ALD day care center in order to fulfill a high school requirement for community service. He had never been around anyone with dementia and had no idea what to expect and what his responsibilities would include. When he started work he was shown around the large room where the clients spent their day and where the bathrooms were located. He was told that one of his activities was to keep an eye on the male clients when they went to the bathroom so that if they had any difficulty, he might be able to assist them. About 4 days later he came home and told me that he was enjoying the experience and becoming more familiar with the routine but that he had had an experience that day that really made him know why his job was important. He had seen a man go into the bathroom and stay there for an unusually long period of time. He went to the bathroom door and knocked and heard sound of crying on the other side. He opened the door a crack and saw the man with his pants opened and turning from the sink to the toilet to the wastepaper basket in desperate frustration and tears. My son then pointed to the toilet and said, “I’m sorry to interrupt. I can see that you are going to use the toilet here. I’ll be outside the door if you need me.” He then closed the door and soon after the client came out looking relaxed and calmed. “I realized that what my job was really about was helping this man to save face”, he explained to me. USA 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.

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.

B. Relations/Communication > Relieve losses,loneliness • Opportunity for social outings with groups (which are personally chosen): with one other person, with others with dementia, with those without memory problems.

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

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

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

A. Choices > 1. Sample narratives • Positive Having time spent with the sufferer to answer the constant question of "Why am I here?" Laughter - sharing a joke. Hugs - both male and female residents respond positively to hugs and gentle touch. Helping -with household chores, eg washing a car, peeling potatoes, hanging out washing. Van rides – outings for us are best between 30 and 20 mins and are successful to the local hardware store and back or to the marina for a ride on our boat. A cup of tea with company. To be treated as an adult. Pets - out West Highland Terrier is popular with many of our residents. Negative Being rushed. Not being given freedom, ie restrained in chair. Being left alone. Not being able to lead "this place" and get on the road. Not enough people to care for the residents. NEW ZEALAND PROFESSIONAL

K. Supporting Caregivers > 1. Sample narratives • Positive Helping carers with education groups which in turn helps person with dementia. Role modelling for carer. Making physical contact with hand shake, hug, kiss. Negative Not listening. Not spending enough time. Making assumptions about the person. L UK 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

B. Relations/Communication > 1. Sample narratives • Positive Opportunity for social outings with groups (which are personally chosen): with one other person, with others with dementia, with those without memory problems. Negative Limited one on one contact in residential settings - not being acknowledged by funding bodies in NZ - not enough care givers employed - not enough divisional therapy hours - poorly paid. NEW ZEALAND PROFESSIONAL

L. Strengthening Services > 1. Sample narratives • Positive QOL themes/concepts/models and their application are aided by genuine caring competencies of the interdisciplinary team. The vision and focus of ADI should be the drive of government policy and strategy so that universal QOL is based on those factors that are at the coal face of care situations. QOL would be greatly enhanced by a continuous journey approach so that QOL is a continuing ongoing never ending. QOL would be helped by a universal 'buy in' to the principles and the continued commitment occurs through passion. Education and ongoing learning and sharing will conquer the ignorance that surrounds the significance of QOL. Negative QOL themes/concepts/models and their applications are hindered by a lack of consistency and continuity of application. QOL is not helped by assumptions made by individuals regarding other individuals value base. Assessments and observations made by carers of individuals affected by dementia are ultimately based on the values of the carer and therefore are not truly reflective of that individuals QOL. NEW ZEALAND PROFESSIONAL

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

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

B. Relations/Communication > 1. Sample narratives • Positive Touch - carer to pwd - means of communication, generates confidence: PWD to carer - communication, awareness of other person, social contact. Music - pwd always enjoyed music before diagnosis, continues to enjoy music - classical, jazz, folk - generates awareness of surroundings/responses, often seems to come to life, tries to speak ,may communicate in single words like love/lovely/mention name. Food – enjoys her food, may respond to certain types of food eg sweets - response may be "mmm". Massage - useful means of communication and maintaining social environment. Aromatherapy - sometimes helps maybe by developing good feelings. Social contact is important to be maintained on a regular basis to keep contact. Religion - need to continue normal religious experiences even if the feeling of the 'carers' think that pwd may not fully understand. Personal experience shows that pwd - even in an advanced stage of dementia – has more understanding than is often credited. It is therefore essential to keep activities and experiences of daily living as normal as possible. Negative Insufficient carers to meet needs of facility. Medical problems not always appropriately dealt with or followed through - actual case resulted in development of MRSA. Often placed too near TV in lounge/common room. Care staff lack appropriate training. Staff talking about pwd in front of pwd in a negative way - can observe negative response of pwd. 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

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

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

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

B. Relations/Communication > 1. Sample narratives • Positive Universal understanding (micro, mego, macro). Better access/availability of quality information to those who care for people with dementia and those also with dementia. I am astounded at the often gut-wrenching accounts from people at this conference, discussing their experiences of desperation and frustration and trying to access better information about dementia eg legal rights etc. but also the general public ignorance and avoidance of this subject. Further, I have been troubled by many of the speakers at this conference, especially from the PWD's. Probably the most pronounced issue to come out of the conference (to me) is the regular experience of feeling it is other people's reaction to/understanding of dementia or lack thereof that often dictated the QOL of people with dementia. As a 30 year old working in a Hospital, I am among the younger persons at this conference. What has really hit home to me is that my generation knows next to nothing about dementia. QOL would improve for people with dementia if younger people somehow had a palatable (I don't know how) way of learning and experiencing the world to an extent, of those living with dementia. To me it goes without saying that basic human rights also must be given to everyone. Time and again people have discussed the importance of respect, love, patience, empathy, trust and honour in order to enforce and improve QOL for people with dementia. Negative People not wanting to or not feeling the necessity to extend them the same degree of respect, love, honesty and understanding. I've heard 'many' PWDs state they have been disgusted at the regularity of people feeling they can cut social and emotional corners so to speak, in their dealings with people with dementia. Lack of education, confidence, training, for caregivers in residences. NEW ZEALAND PROFESSIONAL

B. Relations/Communication > 1. Sample narratives • Positive Universal understanding (micro, mego, macro). Better access/availability of quality information to those who care for people with dementia and those also with dementia. I am astounded at the often gut-wrenching accounts from people at this conference, discussing their experiences of desperation and frustration and trying to access better information about dementia eg legal rights etc. but also the general public ignorance and avoidance of this subject. Further, I have been troubled by many of the speakers at this conference, especially from the PWD's. Probably the most pronounced issue to come out of the conference (to me) is the regular experience of feeling it is other people's reaction to/understanding of dementia or lack thereof that often dictated the QOL of people with dementia. As a 30 year old working in a Hospital, I am among the younger persons at this conference. What has really hit home to me is that my generation knows next to nothing about dementia. QOL would improve for people with dementia if younger people somehow had a palatable (I don't know how) way of learning and experiencing the world to an extent, of those living with dementia. To me it goes without saying that basic human rights also must be given to everyone. Time and again people have discussed the importance of respect, love, patience, empathy, trust and honour in order to enforce and improve QOL for people with dementia. Negative People not wanting to or not feeling the necessity to extend them the same degree of respect, love, honesty and understanding. I've heard 'many' PWDs state they have been disgusted at the regularity of people feeling they can cut social and emotional corners so to speak, in their dealings with people with dementia. Lack of education, confidence, training, for caregivers in residences. 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

A. Choices > Allow coping • QOL would be greatly enhanced by a continuous journey approach so that QOL is a continuing ongoing never ending. QOL would be helped by a universal 'buy in' to the principles and the continued commitment occurs through passion. Education and ongoing learning and sharing will conquer the ignorance that surrounds the significance of QOL.

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.

H. Spirituality > 1. Sample narratives • Relationship is the heart of spirituality. Spirituality is a sense of relationships. Quality of life is dependent upon relationships: - to those who are most important to us – to those we love - to those who care for us – to those who belong to us – to those to whom we belong. Our relationship to God – our environment – our friends – our community – our enemies. The sense of relationship between persons (person with dementia and care givers) requires individual attention with the person with dementia – even if the undivided attention is brief. For impatient caregivers it is not easy to give “individual attention”. Communication is dependent upon giving undivided attention.

B. Relations/Communication > Emotional outlets • Sometimes basic issues of tidiness and hygiene are less important than the social interactive issues which are good feelings.

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

C. Love and Trust > 1. Sample narratives • Support individual carers and person with dementia. My father died in 1997 after suffering from CJD for 4/12. Service Response Listen to what carers and pwd (person with dementia) remark upon, ie “We don’t go out any more”, “All our friends are elderly or have passed on”. = Social isolation and exclusion, loneliness, co-dependency. What helps pwd Patience, kindness, empathy, love, friendly faces Music -opens up the memory. Help carers Own worker to talk to. Information, practical advice. Education about dementia and methods of providing care Contact with other people in similar situations. Great Stuff!! ENGLAND PROFESSIONAL

L. Strengthening Services > 1. Sample narratives • Taking care of my wife at home and in my office for about 6 years, day and night. Her illness getting worse, problematic behaviour started. Preparing for the future, tried to use day services and short stay service but she refused. No available facilities. [My wife was a] user with problematic behaviour. Fear of refusal of admission (give trouble to other residents). Usage of tranquilizers to avoid trouble. Why wasn’t my wife accepted? Isn’t social care supposed to help the weak? There is a lack of nursing facilities accepting persons with dementia. The valley between systems. Only a few hospitals currently accept people with dementia. What are people with dementia without families supposed to do? Finally, the need for specialists to work together as a team, discussions between families, doctors, nurses, care managers and administration. CAREGIVER JAPAN

L. Strengthening Services > 1. Sample narratives • That we always listen to the person with dementia and their carers as to what they want and need. That we keep looking at the services we are offering to see if they are meeting the needs as times and knowledge changes. Remembering that each PWD is an individual and will all have their likes and dislikes so they must have choices and not be forced to participate in any activity that is not to their liking. To have a higher profile so more people in the community can understand, help and support PWD. By trying to find a way to reach those who don't believe that they need help. These are the people (elderly) that don't seem to accept outside help, information etc and both carer and PWD suffer, tired, stressed. K NEW ZEALAND PROFESSIONAL

C. Love and Trust > Love • The loving care received from our care partners- friends and family.

C. Love and Trust > Love • The only thing I feel certain of is that a loving relationship always improves QOL. I feel that the people I help the most are those who I connect with. The ones I care for and even 'love'. People I feel comfortable touching, laughing with, talking to.

B. Relations/Communication > 1. Sample narratives • The presentations from the speakers and audience were extremely powerful about the quality of life that is possible between loving couples. We need also to find ways of achieving a good quality of life to pwd who live alone and take account also of those who live in relationships that are fraught or where relationships have never been good. This ‘real evidence’ of what makes for quality of life is vital for professionals to learn how best to create services and supports for pwd in their families. The session was excellent. Many thanks.

B. Relations/Communication > Support groups • The support and acceptance we receive from groups such as DASN and Living with memory loss support group.

B. Relations/Communication > Understanding by others • To have a higher profile so more people in the community can understand, help and support PWD.

D. Identity/Continuity > 1. Sample narratives • Treating the person and their carers as individuals and with respect and dignity. Acknowledging that the person with dementia and their carers have more knowledge about what their needs may be, than someone else (eg. health prof's. Listen to what they say). Identifying in a holistic way what the needs of the person with dementia AND their carers are, and looking at positive ways that these needs can be met. Knowing that the person with dementia has a history - was a child, son, daughter, brother, sister, patent, brought up a family, had/has a job, has friends, interests etc. Safety, security, warmth, protection and other basic needs met. Participating in life, their community, their family. Touch. The person and their carers feeling empowered. What makes it worse: Ignorance and lack of education, understanding. Lack of support informally and formally. Not being included in decision making, etc, in situations that are about them. Impatience from others. Being rushed. Being treated like a child. Being 'labelled'. Lack of physical touch. Friends and social contacts 'dropping off'. Feeling embarrassed in front of others, or family, friends being embarrassed by some behaviours, for example. NEW ZEALAND PROFESSIONAL

A. Choices > 1. Sample narratives • We do not choose to have dementia. We rarely choose to be carers. In different cultures for different people autonomy may be more or less important. Choice of community is important to my quality of life. Everyone can make choices, what to wear, where to walk, where to sit, what to eat, how to eat. Can we be bewildered by choice? How do we choose well on behalf of others? CAREGIVER ENGLAND

A. Choices > 1. Sample narratives • What has happened that has decreased my quality of life as a person with dementia - decreased reading, comprehension, driving and cooking skills; - decreased tolerance and enjoyment of cultural activities, travel, entertainment, social interaction; - decreased flexibility in thinking, therefore poorer problem solving. - frustrations from memory difficulties, losing things, language problems, etc. - shift in relationship between me and my spouse - he is more care-giver than equal; a lot of our activities together are determined by my decreased abilities and decreased tolerance and energy - we have had to make more fun and enjoyment with less. CANADA 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

B. Relations/Communication > 1. Sample narratives • What practical help has been of use in maintaining or improving my quality of life as a person with dementia? I keep a notebook close by at all times, still put it on stubs of paper to transfer that never make it but I try not to expect too much of myself it keeps the stress level down. I set an alarm on my cell phone for the in between pills am and eve I am home, so that ok. I tell friend as things come up and are not working for me so they can help me out without questions. The computer when working well is another hold on life. I get emails from family, grandkids and friend which helps me to know I am not alone in this disease. A few of my organizational skills are beginning to peep through since (medication) was added to my medications. Life feels better in no all kapakahiki (mixed up). I have no shame in telling everyone that I have AD. I love it when it makes them ask questions. Lectures, lectures, lectures for awareness. HAWAII PERSON WITH DEMENTIA

E. Self Esteem > 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. - development and application of personal coping strategies to increase independence and control of my own life; - maintaining a sense of self-identity and value to others with peer support groups and social interactions and volunteer work; - doing fun and creative activities that give me a positive attitude and good feedback about myself. - maintaining the highest level of health and fitness. - coming to terms with my limitations; changing (reducing) expectations of myself and how much I can do; reducing the standards I used to set for myself - this leads to acceptance and serenity and more positive living. CANADA PERSON WITH DEMENTIA

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

C. Love and Trust > 1. Sample narratives • Wife has AD – last phase of disease. I was invited – I cannot go. My children say Papa you must go. Quality of life – if you ask me now I will give you a completely different answer from 10 years ago. Depends on your conception of life. 10 years ago I enjoyed life – didn’t know what comes tomorrow. I was mostly away, I lived the life of a macho man. She does education, does finance. I enjoyed life with my friends. Now we share a concept of life – like what Mother Theresa did. I believe in Jesus Christ, with his help I can do a lot. It hurts me when caregivers are considered a patient. You don’t call Mother Maria a patient. You don’t call Jesus a patient. Depends on love, if you have love you can do a lot. My friends from 10 years ago are looking at me as a strange guy. For me there is only one word for quality of life – love. ARUBA CAREGIVER