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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.

A. Choices > Safety,not overprotective • Avoid caregivers who make environment too safe, too risk free.

A. Choices > Individual care plans • Avoid environment they dislike: people, noise, entertainment etc.

A. Choices > Non restrictive context • Avoid finding yourself in a locked environment when you are a person who has always loved to walk and be outside.

I. Stimulation > Moderation • Avoid noisy, unstable environment eg blasting TV, bright lights.

A. Choices > Safety,not overprotective • Environmental: by providing a safe environment for patients especially at night to overcome problem of night wandering. I have worked for 12 years in a secure specific dementia unit with mainly D6 patients. I was sitting next to a little, frail 93 year old lady about 4'8" when another patient male about 6'2" walked past. This little lady was extremely confused but had an occasional lucid moment and she said to me 'I'm scared of that man, he follows me and sometimes comes into my room at night'. Consequently the bedroom doors in our unit were cut in half to make a stable like door, the top half left open at night but the bottom half closed with a latch lower down on inside so as to keep wandering patients out. I felt for this little lady who most of the time was not able to express her feelings but could feel her fear over this situation.

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

J. Basic Comforts > 1. Sample narratives • Have helped people with dementia Well trained staff. Consistency of staff across all shifts. Life books for staff/volunteers to discuss. Good clinical care to prevent health crisis. Staff not task oriented but focus on the needs of the resident. Use of interdisciplinary team. Have helped carers Welcoming environment/no restrictions. Feel part of the team. Involved in decision making. Carer support groups. Assistance with taking resident out into community. Using facility for family functions. Positive Ever changing environment rewarding. Can provide holistic care. Can include family/carers. End of life experiences – privilege. When you get the culture right it all falls into place. Joy of working with people with dementia (life can be fun). Negative Funding. Finding good quality staff. Expectations of family member in a residential facility. Lack of time. Lack of recognition from community about the value of working in aged care. Keep up the good work. A AUSTRALIA PROFESSIONAL

J. Basic Comforts > 1. Sample narratives • Improvements Environmental: by providing a safe environment for patients especially at night to overcome problem of night wandering. I have worked for 12 years in a secure specific dementia unit with mainly D6 patients. I was sitting next to a little, frail 93 year old lady about 4'8" when another patient male about 6'2" walked past. This little lady was extremely confused but had an occasional lucid moment and she said to me 'I'm scared of that man, he follows me and sometimes comes into my room at night'. Consequently the bedroom doors in our unit were cut in half to make a stable like door, the top half left open at night but the bottom half closed with a latch lower down on inside so as to keep wandering patients out. I felt for this little lady who most of the time was not able to express her feelings but could feel her fear over this situation. NEW ZEALAND PROFESSIONAL

B. Relations/Communication > Group outings • Opportunities for 2-3 couples to share dining, dancing, holidays together in a 'protected' environment or facilitated environment adds huge QoL for carer partner and PWD. Not only 'couples' - mothers, daughters.

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

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

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

K. Supporting Caregivers > 1. Sample narratives • Positive Day carer relief provides opportunities for both carer and person with dementia to relate with others free from the anxieties - for carer: security of knowing pwd is safe and pleasurably involved, enables interest pursuits-for patient: security of knowing the people at centre (always same). Security of being reassured when needed. Security of being warmly welcomed. Pleasurable experiences. For both - encouragement, listening ear, added colour to lives. Negative Day Care Relief - change of environment presents anxiety. This needs much reassurance. 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 Feeling they have real relationship with professional carer. Participation in normal social interaction eg respite does not necessarily mean separation from care partner. Opportunities for 2-3 couples to share dining, dancing, holidays together in a 'protected' environment or facilitated environment adds huge QoL for carer partner and PWD. Not only 'couples' - mothers, daughters. Sense of belonging/community. Able to give, to be thanked, sincerely, not patronisingly. If, as a professional, I can assist carers to improve their QoL by pursing more interest apart from care. If I contract to abide by PWD's decision after he/she tries a culturally appropriate activity of my suggestion. Negative Having "roles' often many - worker, provider, lover, decision maker taken away, absolved, usurped. Always having things done, be on receiving end, no sense of reciprocity. Pressure to accept service, intervention. Rushing, not active listening. AUSTRALIA PROFESSIONAL

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

B. Relations/Communication > 1. Sample narratives • Positive Support/love/understanding/acceptance from family, friend. Understanding/acceptance from within wide community. Physical quality environment - financial security, comfortable surroundings, familiar surroundings, safe environment. Emotional/general - continued social interaction, included within family circle, remaining a contributory member of family and group of friends, being allowed to make/contribute to decision making. Ability to access information about disease. Availability of resources and information. Availability of services. Contact with others in a similar situation. Good overall health. Negative Emotional/General - attitudes of friends and family, lack of understanding, difficulty in being accepted as a 'worthwhile' member/person, choices/decisions made on your behalf, lack of public awareness. Physical - lack of funds, inability to perform tasks of daily living to usual standard, being in an environment you are unfamiliar with or don't want to be there. Lack of resources and information, lack of services, isolation, poor general health. NEW ZEALAND PROFESSIONAL

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

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

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.

I. Stimulation > Moderation • Routine. Same things happening at the same time everyday. Remaining in a familiar environment with familiar people.

K. Supporting Caregivers > Appreciation and care • 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.