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H. Spirituality > 2 Any other • Spirituality is not just religious eg love of nature/music. CARER AUSTRALIAN

C. Love and Trust > Love • I felt the love I gave her was enough, when I came in she lit up. CARER PUERTO RICO

H. Spirituality > 1. Sample narratives • I was an alter boy, circumstances got me away from it. I had two situations with my mother then my wife. I felt the love I gave her was enough, when I came in she lit up. I could feel the spirituality. PUERTO RICA CARER

E. Self Esteem > Reduce stigma • . I have no shame in telling everyone that I have AD. I love it when it makes them ask questions.

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.

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

C. Love and Trust > 1. Sample narratives • Being able to choose within boundaries of safety and routine suitable to resident. Love and care showing through in your individual care, body language. Staff levels with time to give to the resident when you see, love and care. What makes it worse: let me do it - within the safe environment. Regimented Unit, time to do, eat, shower, sleep. Talking about or around the person. Staff levels not adequate to cope with situations that arise when you see love and care. NEW ZEALAND CAREGIVER

C. Love and Trust > Trusting relationships • Being with the people we love and care about and who care for us.

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

B. Relations/Communication > Emotional outlets • Find a physical intimacy that works for both sides.

H. Spirituality > 2 Any other • Foundation is love and this is inextricable from spirituality. CARER UK

C. Love and Trust > Love • Giving the person love in a gentle compassionate way when the dementia sufferer is receptive not to make the carers feel good about themselves. To be as far as possible in tune with the person's needs

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

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: 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

H. Spirituality > 1. Sample narratives • Husband had diagnosis of Alzheimer’s made 11 years ago. The only thing I ask the Lord is love and patience, love understanding and patience. CAREGIVER DOMINICAN REPUBLIC

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

K. Supporting Caregivers > 1. Sample narratives • I come from a country where there is a lot of stigma, where there is no help. Nobody tells you hug your mother, to love your mother. You can turn your love off. CAREGIVER LEBANON

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.

H. Spirituality > 2. Any other • 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.

D. Identity/Continuity > 1. Sample narratives • I personally would not like my quality of life to be governed by what another person thinks is right for me especially with regard to doing activities that I have never done or enjoyed. I think this has been touched on this morning by one person from the floor, saying how their loved one detested playing games - but gained self esteem from doing somehting long since learned and a part of his life - and another said her loved one enjoys playing games with her. I enjoy, as an activities organiser for older people in care, getting things together for people that cater for them as an individual unique person; looking so much at their past for guidance. I hope sincerely that should I need love and care (for dementia or any other illness) that people will look at me as an individual and try to find what I would need and like to promote, assist and enhance my personal quality of life. I am me. Example, I enjoy calling housie for people who enjoy playing it, but should I ever be in care I would detest playing it myself - never have done and never would. Summary - to respect me and my wishes and what is important to me. I haven't written anything like this before, hope these are the kind of thoughts you are after. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > Person Centered • I personally would not like my quality of life to be governed by what another person thinks is right for me especially with regard to doing activities that I have never done or enjoyed. I think this has been touched on this morning by one person from the floor, saying how their loved one detested playing games - but gained self esteem from doing something long since learned and a part of his life - and another said her loved one enjoys playing games with her. I enjoy, as an activities organiser for older people in care, getting things together for people that cater for them as an individual unique person; looking so much at their past for guidance. I hope sincerely that should I need love and care (for dementia or any other illness) that people will look at me as an individual and try to find what I would need and like to promote, assist and enhance my personal quality of life. I am me.

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

C. Love and Trust > 1. Sample narratives • It’s all about love – don’t you die.

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

C. Love and Trust > Touch and hugging • Lots of love and physical contact (if appropriate - not all people like to be touched).

C. Love and Trust > Love • LOVE, LOVE & MORE LOVE.

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

D. Identity/Continuity > Continuity with life story • My mother was a poet. I found comfort for us both by reinforcing her love of reading poetry.

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.

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

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

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

C. Love and Trust > Love • Our being does not reside in our brain. Love and compassion, in my frame of reference, are the same. Washing the hands of my dying father was a task of love and compassion. CARER

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 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

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

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

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

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

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

K. Supporting Caregivers > 1. Sample narratives • Positive There are two states of care the first is those who care out of duty. The second is the carer who imbues part of self into the person with dementia and then dares to allow the person with dementia to enter into their self. The language of care is a major concern in carers over loss of speech. It is often overlooked that speech is only 5% of communication. Our attitude towards the PWD is far more important than verbal communication. The enduring bonds of love allow interactive care to become a reality. Without love each person is focused on individual needs. Negative It is a sad indictment on our society that in the carer cohort that I associate with a number of carers wear out and die prior to the PWD. The need for support in funding on local national and international levels are critical to ongoing dementia care. AUSTRALIA PROFESSIONAL

C. Love and Trust > 1. Sample narratives • Positive Trust the care giver is supported and cared for - trust their needs and acknowledged and addressed. Trust time is given to address the needs as defined by person with dementia and their, care giver and to discover what those needs are. This is very much influenced by cultural, resource, policies and society's attitude in general. When a person is acknowledged as more than their disease/dementia. What is addressed is who they were before dementia and who they are now. That the persons strengths are acknowledged and worked with. Negative The care giver is unsupported and unheard. When the person is ?? with as the disease/dementia and not as a person. That time is not given to fully address the needs of the person with dementia and their carer. Time or lack of it is affected by cultural world view, resources, policies and society's attitudes in general. That the focus is on what is wrong about the person and what they cannot do, or should not do. NEW ZEALAND PROFESSIONAL

A. Choices > 1. Sample narratives • Positive Very individual - let individual make decisions/give time to make decisions. Let individual choose. Allow person to express likes, dislikes. Try to provide for the likes. Safe environment — pleasant environment. Provide company but in small numbers and not for too long. Provide lots of fun, we need to laugh. Let me eat what 1 like. Tell me something lots of times to help me remember. Provide a secure, loving environment. Communicate clearly and slowly. Take person out to do the things he/she has always enjoyed doing eg window shopping, walks, movies. Negative Do not make me do the things I don't like, I have never liked because you think it is good for me. They are not good for me! Don't remind me that I have forgotten. NEW ZEALAND PERSON WITH DEMENTIA

C. Love and Trust > 1. Sample narratives • Positive Feeling loved. By not only a physical hug (which some of my clients say they only get once a week at the centre) but by all over actions. By not feeling a nuisance and a burden on the family/carer. Touch is so important - hand/feet massage, manicures, facials makes people feel cherished and special and reduces agitation. It is hard to run away when your feet are in a nice warm foot bath or your nail or drying! Negatives Carers who have not or will not accept their loved ones situation - know it but do not accept. Resentments. Loud, raised voices - shouting orders - leads to aggression. Marriages which pre-dementia have not been happy and when dementia accentuates not very nice behaviour - education/marriage counselling is not always successful. Once again I believe love is the key. AUSTRALIA CAREGIVER

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

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

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

C. Love and Trust > 1. Sample narratives • Positives:Feeling as if you are a 'valued, treasured' person. When you are honest with residents this builds trust and makes the resident feel like a real person. Negatives:Residents with AD are not deaf, so we do not have to speak boudly and at a high pitched tone to communicate. If you are not meaning what you are saying, eg "What a wonderful person you are" - do not say it, as the resident will pick up that you are fake. Has large effects on residents self-esteem and self-worth. NZ PROFESSIONAL

C. Love and Trust > 1. Sample narratives • Preserve dignity. Love (physical, emotional contact). Trust, know who they are (life history). Awareness spiritual needs. Cultural requirements (ethnic). Age appropriate activity. Allowed to be themselves (do things in their own time) while they can. Quality communication. Choice (what, where, when how). Carer education, experience, character. Individualised – appropriate carer. One to one contact (your time). Environment (safe). NEW ZEALAND PROFESSIONAL

B. Relations/Communication > Connections • recognizing those I love

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.

K. Supporting Caregivers > 1. Sample narratives • She has so far had 10 years already, we have to help her with everything. I am now a much more complete person. I am much happier. My QOL depends on my church – I keep smiling personally, the higher my quality of life the happier I am and the happier people around me will be. Don’t put the elderly too soon in an institution. If something terrible happens never say why we accept it and go for it. Please don’t equate care giving with stress, why do we have to have stress? Being a care giver means love and happiness. Don’t wait for someone to get AD to become a care giver. AD has no cure but it has a solution – our QOL. CAREGIVER ARUBA

L. Strengthening Services > 2. Any other • Staff levels with time to give to the resident when you see, love and care.

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

H. Spirituality > Connected to God • The only thing I ask the Lord is love and patience, love understanding and patience.

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.

D. Identity/Continuity > 1. Sample narratives • What do you think makes up quality of life is for people with dementia? Being with the people we love and care about and who care for us Being able to still do whatever things are within our capacity as it stands on any given day. Having the opportunity to participate and our efforts being valued even if they are of a lesser standard than we used to product Maintaining the feel that we are still accomplishing something of value. AUSTRALIA PERSON WITH DEMENTIA

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

C. Love and Trust > Trusting relationships • When you are honest with residents this builds trust and makes the resident feel like a real person.

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