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

H. Spirituality > 1. Sample narratives • What about the person with little or no religious faith? I and my husband are lapsed Christians now agnostic in the usually-defined sense. But he and I, despite the very severe dementia, can communicate with each other at a deep level - beyond cognition, beyond simple emotion, but spirit to spirit. This is a good place we wouldn’t have been in except for his dementia. Spirituality is not just the province of religious believers. Spirituality to me is the very essence of the person with dementia or their carers. Emotion is the gate through which we reach spirituality. For without love, we cannot reach inside to the essence of the person with dementia, nor they to reach us. CARER UK

B. Relations/Communication > Keep communicating • . Communication is very important - not just talking. Having a note book - writing down where you are going and phone contacts. Have a separate book for activities you are doing together.

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 • 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.

H. Spirituality > 1. Sample narratives • As a manager of a dementia home which is a Roman Catholic convent it is very intersting to see the effect of faith on people with AD although speech has almost gone and communication is very difficult when attending a service or just singing hymns in their sitting room they always remember the words of prayers and hymns. My own father had severve dementia but a few days before his death we attend a service in the lounge of his home and he sang loudly to all the hymns, I was amazed by this and very touched. If a person has a faith it seems to always be there even at the end when often all other sommunication has gone. I am amazed at how many people wish to come into the convant because of the religion, many say it is so important in their loved ones time of suffering with AD.to be in a spiritual enviroment. I feel that many of those suffering AD almost have a calmness with them.

E. Self Esteem > Reduce stigma • 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.

L. Strengthening Services > 2. Any other • 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.

I. Stimulation > 2. Any other • By light skimming of newspaper and magazines that are brief, light and with lots of pictures, I continue to read. TV stimulates, like news, history, traveling shows etc. I use easy crossword puzzels, I listen to lots of music, mostly music without words. It calms me.

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

B. Relations/Communication > Keep communicating • Communication - ability to engage in meaningful, reciprocal communication (conversation, gesture, touch) enabling pleasure and communication of needs/wants/comments.

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.

L. Strengthening Services > 2. Any other • Education, understanding and support from Alzheimer's Association.

B. Relations/Communication > Understanding by others • 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.

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

B. Relations/Communication > 1. Sample narratives • Have places to meet which stimulate memories and sense of identity – familiar objects and music and images around. Concentrate more than normally on non-verbal activities and inter-actions. Share your own feelings, memories, experience and don’t worry if person with dementia is just listening for a while. But leave gaps for them to come in. Use simple structures in verbal communication which don’t exclude person with dementia. Empathise by imagining or even playing out what it might be like to have fewer words available and to be worried about making mistakes. Allow coping strategies, even if they are transparent – accept them as desire to still be part of things. Don’t marginalise or talk across!

H. Spirituality > 2 Any other • He and I can communicate at a very deep level through touch. CARER UK

B. Relations/Communication > Keep communicating • he and I, despite the very severe dementia, can communicate with each other at a deep level - beyond cognition, beyond simple emotion, but spirit to spirit. This is a good place we wouldn’t have been in except for his dementia. CARER UK

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

B. Relations/Communication > 1. Sample narratives • How difficult it is to communicate in the old ways. How important it is to communicate and find new ways. USA PROFESSIONAL

B. Relations/Communication > Keep communicating • How difficult it is to communicate in the old ways. How important it is to communicate and find new ways.

F. Enjoyment > Humor and laughter • Humour, and understanding that humour is more applicable when the person has dementia - compassionate but 'natural', 'everyday' humour. It works!

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

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

K. Supporting Caregivers > Respect • I care for my husband who is 78. He first showed symptoms in Jan 1995. My great difficulty then was getting the professionals to LISTEN to me – he presented so well, and was very good at ‘covering up’.

G. Creativity/Aesthetics > Music • I listen to lots of music, mostly music without words. It calms me

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

A. Choices > 1. Sample narratives • I think you are on absolutely the right track with the centrality of “choosing among preferred options for quality of life”. There are many fears I would have about typical responses/environment in a care home, especially: • Lack of access to fresh air and nature in all weathers (and having the window open at night is vital to me) – therefore I will be labelled a wanderer and at potential risk of falling out if window and behaviour will be treated as “challenging”. I would like more explained of the BPSD slide put up in your plenary presentation, to be reassured that you understand that these “symptoms” are invariably not the disease process but lack of understanding (of individual, life routines, habits) and denial of choice. ENGLAND PROFESSIONAL

B. Relations/Communication > 1. Sample narratives • I want to be wife. We can’t have a drink – great. Live in the moment, moment by moment. How to communicate to grandchildren what was happening? Acceptance of what is going on. Decision making needs a different approach. You must seize the moment. I want to be a real and caring wife. PERSON WITH DEMENTIA

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

L. Strengthening Services > 2. Any other • Lack of understanding of early stage dementia by some medical personnel has lead to some unfortunate experiences. Firstly with a doctor, which resulted in my medications being cut off for a period and the necessity to change doctors and re-establish on medications, then with a series of incidents in a hospital that have left me scared to be admitted even when necessary for other reasons.

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.

K. Supporting Caregivers > Information • 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.

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

I. Stimulation > 1. Sample narratives • Positive Ability to be independent, going for a walk. Being able to go to church on Sunday. Making planter/nesting box (my Dad was a carpenter and joiner prior to retiring). Laughter, laughing at life/TV. Going for a drive (Dad no longer drives). Having a snooze in the afternoon. Being relaxed. Having a good nights sleep. Sitting in the sun. Completing a task. Enjoying and preparing meals. Enjoying the company of grandchildren. Successfully communicating - able to talk and be understood. Being warm and comfortable. Negative Being incontinent - especially in public. Not being able to speak properly. Feeling down in the dumps. Your wife being upset with you. Doing silly things - making a cup of tea in the sink. Frustrations - not being able to communicate with people to allow them to be understood. Not being allowed to time to complete the tasks. Forgetting what I wanted to do. People taking over tasks I can manage. Being bossed around by my wife and daughter. Not being able to drive - a major upset/issue. Comment - It is a struggle for me personally to sit here and presume what are QoL issues for my Dad, this is my perspective, not his. NEW ZEALAND CAREGIVER

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

A. Choices > 1. Sample narratives • Positive Being loved, secure environment, being allowed to remain in own home, being understood, being allowed space, freedom, having a choice, being involved in decisions, remaining at home. Negative Lack of understanding of condition by caregivers, family, etc. Being laughed at. Having no choices. Being made to do things I would never normally do. Not being spoken to. Being excluded from decisions. Being watched as if I am about to do something. Being placed in an institution without consent. No communication. 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 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

J. Basic Comforts > 1. Sample narratives • Positive Ensuring that communication is clear - allowing PWD time to understand and respond. Inclusive conversations and discussions. Being included in activities and allowed to take time to get things wrong. Being able to do things their way and take chances. Good health care - ie ailments treated, good fitting teeth, hearing aids. Being encouraged to pursue long standing interests and activities. Negative Not being included. Being bossed around - loss of autonomy and control over your own life. Too great a use of medication. Being obliged to spend long periods of time with people where the only thing you have in common is the illness. Finding yourself in a locked environment when you are a person who has always loved to walk and be outside. 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 Humour, and understanding that humour is more applicable when the person has dementia - compassionate but 'natural', 'everyday' humour. It works! Acknowledgement that (as a carer) you are doing your best, that sometimes what you say is not what you mean and to not hold it against you forever. Maintaining physical activity and socialisation for both the carer and the person with dementia. As part of a group or individually. Accepting that the carer is the person who needs to do the care plan, that the health professional can not dictate this just because the person is in care. Ensuring that the person in care is kept looking neat, tidy "as if the person is generally cared about and not scruffy, uncoordinated or in another persons clothes". For HC givers to know about what goes on for the carer - health wise, financially and socially - over and about the carer role. Negative Honesty from HC professionals, a seeming inability to cope with appropriate emotional responses -1 put this point first as, from a carers point of view, I saw the course ahead as a set of hurdles and not a straight line. A genuine desire to be 'part of the loop' with the person, the carer and the whole family - the contact being seen only as a professional encounter. Not being addressed in a condescending way - go to the person and the carer, we are not contagious. The unwillingness of some personnel - such as police - to be involved with people with dementia whom the carer is wanting and trying desperately to keep the person in their own home. I know they are busy but it is very uncorporative. NEW ZEALAND CAREGIVER

L. Strengthening Services > 1. Sample narratives • Positive 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

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

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

A. Choices > 1. Sample narratives • Positive Public Understanding and Acceptance. Validation as ME. Sense of control over and inclusion in personal life matters. Choice. Encouragement. Peace (as seen me me). To be enabled to achieve according to own standards and goals and maintain sense of still retaining previous abilities (PRIDE). We all must be allowed to ACHIEVE something, anything (in own eyes). Be allowed to reminisce. Taking time to find and satisfy personal needs - they haven't 'gone away' despite DEMENTIA. Negative Domination by Authority - facility or domestic and over regulated. Being denied personal choice. Personalities are so different - needs and conditioning have produced the "me" who, at this stage, still 'need'. AUSTRALIA PROFESSIONAL

L. Strengthening Services > 1. Sample narratives • Positive Ratio of staff per residents ie 1-3. To laugh ( a lot). To be treated equally and with dignity. For caregivers to show compassion and listen to any concerns. Negative Not enough staff per ratio of residents ie 2-18. Made to do activities which you don't like. To be treated as sif they are sick units. To be ignored. Bad caregivers employed. 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

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 Use of humour and laughter. Lessen anxiety by security and fun – enjoying life part of QOL. Involvement, control in own life - choice, empower. Lessen anxiety by acknowledging illness and needs - ie explain same concerns every day so that the feeling of confusion and anxiety lessened 'I told him yesterday, he won't remember if I tell him again so why bother'. Acknowledging person and individual life history - keep emphasising the individual in activities, conversation or choices that are offered (ie relevant to person). Support carers - respite, listening, asking what would be helpful, supportive environment where time can be spend with person with dementia (as opposed to general public where awareness is not yet the best). Public awareness of issues faced by people with dementia, especially regarding the person as an individual - acceptance, support, helpful and with interactions. Some risk taking to ensure choice and involvement in activities important to the person for as long as possible. Resources to enable greatest autonomy – ie technology to aid people to stay in own home as long as possible, ie smart house. 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. 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

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

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

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

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

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

L. Strengthening Services > Advocacy • Public Understanding and Acceptance. Validation as ME.

H. Spirituality > 2. Any other • 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.

F. Enjoyment > 1. Sample narratives • Security, peace of mind, being loved and wanted, to belong, to be able to have a choice, laughter is the best policy, understanding, being able to express yourself. Take time to listen to the person with dementia. We live for the moment not the day. Respect their feelings and beliefs. The biggest thing is to laugh with them, not at them. D Australia CAREGIVER

K. Supporting Caregivers > Respect • Senior staff, doctors and consultants listen to caregivers when the resident cannot speak for themselves

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

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

J. Basic Comforts > Clinical care • The patience and understanding of a good General Practitioner.

A. Choices > Involved in decisions • The understanding and advice given to us by the local Alzheimer's Association people around us and the mental health people we are under.

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

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

B. Relations/Communication > Understanding by others • Universal understanding (micro, mego, macro).

H. Spirituality > 1. Sample narratives • What about us with little or no religious faith. Now agnostic. He and I can communicate at a very deep level through touch. Gone beyond simple emotion, now communicating spirit to spirit. Spirituality not just the province of religion. UK CARER

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

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 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

L. Strengthening Services > Staff training • 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.

A. Choices > 2. Any other • “symptoms” are invariably not the disease process but lack of understanding (of individual, life routines, habits) and denial of choice.