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K. Supporting Caregivers > Information • . 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.

K. Supporting Caregivers > Appreciation and care • Acknowledging that the person with dementia an their carers have more knowledge about what their needs may be, than someone else such as a health professional

G. Creativity/Aesthetics > Activities • 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.

K. Supporting Caregivers > Information • Availability to information about dementia - written, verbal, IT - when needed, where needed - even rural/remote areas.

L. Strengthening Services > Staff training • Better knowledge - people who provide care need to be informed and updated - attend conferences such as these 3 days - meet network, share and develop ideas.

L. Strengthening Services > 2. Any other • 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.

L. Strengthening Services > Staff training • Education and training of care providers - home based and professional.

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 • First we need to raise awareness for the public and for the medical profession, this needs strategy. To improve quality of life publish rules and policy. There is a need to bear and care. If the person with dementia is in care home we need to have their life story as much as possible. Information is important in general and in particular. PROFESSIONAL JAPAN

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

K. Supporting Caregivers > 1. Sample narratives • I am a volunteer worker at a public health centre for people with dementia living at home, to come and enjoy themselves. There are some occasions when I get to know people, they start to tell me how they feel and I realize what is going on in their mind. It is important for people with dementia to have plenty of opportunities to express their feelings and also, caregivers should listen to what they have to say. Naturally, I feel it was worthwhile to join this conference. I occasionally forget things and sometimes wonder what would my husband do if I suffer from dementia. I hope there will be someone to support my husband if it happens. For this, I look forward to have a website available to give people necessary information and encouragement. CAREGIVER JAPAN

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.

L. Strengthening Services > 1. Sample narratives • I have a choice to go on or to stop caring. In a country with a per capita income of $700pa what can we do? Demonstration of what can be done for people with dementia is incredible. We need to bring this information into the mainstream. Does knowing make quality of life better or worse? CAREGIVER SRI LANKA

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

L. Strengthening Services > Staff training • 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.

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

K. Supporting Caregivers > Information • Information, practical advice. Education about dementia and methods of providing care.

L. Strengthening Services > 2. Any other • Keep looking at the services we are offering to see if they are meeting the needs as times and knowledge changes.

L. Strengthening Services > Staff training • Lack of training or caring in staff. Some people just treat it as a job and the residents as a name.

K. Supporting Caregivers > 1. Sample narratives • My mother had AD. I discovered a lack of information and education seriously impacts both the quality of life for the person with dementia and the carer. I heard this quotation which sums it up! ‘The care you give to yourself is the care you give to your loved one.’ USA

D. Identity/Continuity > 1. Sample narratives • Need for de-stigmatisation. It is difficult for younger people with dementia everywhere. It is a problem when younger people are excluded. There is not sufficient staff/training and support and training for families CAREGIVER JAPAN

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.

L. Strengthening Services > 1. Sample narratives • Our society do not value the work of care staff. Pay and conditions are appalling and yet we expect competence and excellence in care, without providing the tools so that this can be achieved. Those who make policy decisions, yet do not work directly with people who have dementia, do not consult those who actually do the work. Until we accept that this area of care demands specialist training and we start to value staff and acknowledge the complexity of the work they do, then care will continue to remain inadequate, inconsistent, and person focused individual care will be denied people with dementia and they will remain excluded and marginalised within Western Society. The British Government cannot continue to ignore this issue and specialist care must be provided free at the point of need. Dementia Care Manager. UK 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

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

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

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

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

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 In home and community: Availability of good support services to keep stress levels within acceptable levels. Better understanding from government with action from the government so that above is available. In residential care: Education of staff, not in a vacuum but inclusive/family- resident, experts and staff and administrators. The levels of staff. Activities appropriate to the person and group. Individual care plans. Stop being problem orientated - live life. Negative Encouragement of minimal standards/minimal staff within residential care due to government legislation. Philosophy of the care place (home as well as residential). Forget that people are individuals and have had a life with its ups and downs and lumping everyone together. NEW ZEALAND PROFESSIONAL

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

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

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 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

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

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

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

L. Strengthening Services > 1. Sample narratives • Present situation and problem of care management for people with dementia: usually we are misunderstanding that people with dementia need a lot of care and they cannot live in their own home. the shortage of specialist of dementia care causes confusion; the lack of knowledge of dementia. The care manager can assess needs in daily life of people with dementia who cannot express their opinions; care planning; creating the network of care-givers. The aim of care management: person-centred care; supporting people with dementia in order to continue their life in community. PROFESSIONAL JAPAN

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.

G. Creativity/Aesthetics > Activities • Sensitivity about tired caregivers trying to rush to achieve their workload. Better training of caregivers.

L. Strengthening Services > 1. Sample narratives • Supporting people with dementia (and their families) by community, from a nursing point of view: People must be repeatedly taught the right way to see dementia patients from their childhood. Children naturally learn from adults. Person centered nursing: If we want to have people who, as a job, will care for people, we must provide facilities to develop their humanity. Care training for dementia is rarely practiced at hospitals. Although the necessity of education is recognized there are no realistic supports or connection with other facilities yet. If we can show how we care for people with dementia as specialists and how we can build up a closer connection with other facilities that will be a good example to educate people working in spots. A curriculum to qualify as a specialized nursing staff for the elderly and a nursing care systems management program are available now. In addition, the opinions of those who use the service are very useful to reform the spot. PROFESSIONAL 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

B. Relations/Communication > Support groups • The information and support I get from computer support 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.

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.

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

K. Supporting Caregivers > 1. Sample narratives • We tend to see people with dementia and carers once the disease is fairly advanced. Our focus is also on the quality of life of the carer and providing support to the carer thus enhancing (we hope) the quality of life of the person with dementia. The carer often makes a difficult choice to even contact the Alzheimer’s Society. Our role is to provide carers with the information to make choices right for them at that time and to support them in their decision but also to be non-judgemental about their choice in a way that will enable them to make another choice, maybe even back track if they wish. Given that carers can feel very strongly the responsibility they have for the person with dementia, I think we should acknowledge that too many choice or any choice can sometimes be overwhelming for them too. NEW ZEALAND

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

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 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

K. Supporting Caregivers > Information • Withholding information on diagnosis/services - or not giving opportunity to continue accessing information.

L. Strengthening Services > Access to services • Without someone with knowledge of 'the system' it can be impossible to know how to access the health services that are available.

J. Basic Comforts > Diet and nutrition • 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).