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A. Choices > Involved in decisions • . Having a decision in your treatment plan with your doctor.

D. Identity/Continuity > 1. Sample narratives • . What improves quality of life for people with dementia? Medication therapy A support network that gives you hope and treats you as you were before diagnosis (although they must understand your limitations now). Being treated as the person whom you were before diagnosis. Being treated as a person not a patient by family and friends. Having a decision in your treatment plan with your doctor. Being financially stable is a big help as it alleviates a big stressor that could hinder our well being. CANADA PERSON WITH DEMENTIA

G. Creativity/Aesthetics > 1. Sample narratives • Comfort - feeling at ease due to use of textures that are warm and reassuring(eg soft bedsheets, wear wool). Engaged with world - through being given opportunity to work on art activities eg painting, line dancing, oral archives. Personal identity reinforced eg by seeing ones own art on walls, well framed. Seeing one's own photo - smiling, dignified. Receiving feedback on ones own art esp. from an artist. Using ones birth language, and jargon of choice eg science with a science oriented nurse, arts with an artistic person. Participating in preparing food - making ones own favourite receipes, smelling the aroma of food one has enjoyed in the past, being able to offer other food one has helped to make. Deciding ones own 'statement' with art materials.Having good quality music and sound, well-tuned radios, hearing live music performed in the room or lawn. The senses have a long memory and art focus stimulate sensual and emotional memories (just thing of the effect favourite songs have on the feeling of younger people). Knowing ones own life story is being loyally captured by someone else (eg memoir of a partner). I am passionately committed to this and can talk about it. What makes it worse: Little contact with young people schools. No outlet for emotions. No practical activity that is driven by the person. Not able to complete anything, and see it completed. Not able to see an impact on others of ones endeavours (eg an artist reacting to what one has made). Not being able to externalise ones thoughts and feeling. No contact with world beyond the immediate care environment. Little public reflections of the art, life, experiences of PWDs. We need public sculptures (big bronzes!) showing the reality and dignity of older people and PWDs (this would also help develop public attitudes). C NEW ZEALAND PROFESSIONAL

B. Relations/Communication > Connections • continued social interaction, included within family circle, remaining a contributory member of family and group of friends, being allowed to make/contribute to decision making.

L. Strengthening Services > 1. Sample narratives • Doctors impose a lack of choice on our patients. There are always choices available, you can have your beans with oil. Enrich the day with possibility. PROFESSIONAL EGYPT

A. Choices > 1. Sample narratives • Excellent presentation. Some comments: 1) “Being stopped from doing things”: consider the example of the decision to stop driving – the shared responsibility – person with dementia, physician, family, Dept of Motor Vehicles. It’s hard to take away without having some attractive alternatives. Unless dementia-friendly paratransit is developed, supported, accessible, affordable etc the topic of driving seems to be widely pushed aside. 2) Value of Family caregiver/care experience: Yes, I do highly value the family and person with dementia. However, let’s talk in terms of “partnership” among family, professional and pwd. Eg in studying wandering behaviour, caregivers reported on strategies to respond to wandering, one eg stated “I don’t have a problem with wandering, I sleep at the threshold of the front door and feel my wife step on me when she tries to get out” Another, “He takes the dog – and the dog knows the way home”. Another, “The police always bring him home”. Clients and professionals have a role in helping caregivers assess their strategies. 3) Interdependence – cg & prof. In a study I conducted several years ago on why caregivers did not follow through on professional recommendation on home adaptations, one variable which proved to be interesting (sample too small – n=40, I don’t recall sig). However, we looked at how ‘institutional’ the adaptation was – were caregivers less likely to try adaptation if it required a change in their environment? 4)Communication. Lawton’s Philadelphia Geriatric Affect Scale and Hindley/Volves assessment of PAIN in late stage dementia. (Helpful in looking at measurable mean in assessing communication). USA PROFESSIONAL

A. Choices > 1. Sample narratives • Family members should be entitled to leave (so respite is essential). If family members are feeling strong physically, mentally and are trained (and not just experiment on PWD) they’ll make choices/decisions together with PWD. If this is not possible they shouldn’t be allowed to take decisions for the PWD unless it’s for his/her good, safety. Courts have to decide sometimes and protect PD when their human rights (incl. The right to decide) are abused. CAREGIVER POLAND

C. Love and Trust > 1. Sample narratives • Giving a safe, warm, friendly home environment, as we are their family in care, away from their own loved ones. Making sure all their daily needs are met and ensure any personal activities eg piano, knitting etc. are still encouraged. Every situation is different eg pain, illness etc. so these all need to be met at different levels. We need to be aware of cultural differences and meet these needs. Give them the opportunity to decide aspects of their daily living for themselves. Respect. Involving the family as much as possible not just with care, but in the nursing homes, home environment. Negative Disrespect to people who cannot help themselves, forcing your values, opinions. Making judgements, when we shouldn't. Deciding what's going to be no matter what. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Giving a safe, warm, friendly home environment, as we are their family in care, away from their own loved ones. Making sure all their daily needs are met and ensure any personal activities eg piano, knitting etc. are still encouraged. Every situation is different eg pain, illness etc. so these all need to be met at different levels. We need to be aware of cultural differences and meet these needs. Give them the opportunity to decide aspects of their daily living for themselves. Respect. Involving the family as much as possible not just with care, but in the nursing homes, home environment. Negative Disrespect to people who cannot help themselves, forcing your values, opinions. Making judgements, when we shouldn't. Deciding what's going to be no matter what. NEW ZEALAND PROFESSIONAL

A. Choices > Individual care plans • Good care plans for individual likes, dislikes and best way to handle or not handle each resident.

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 > Clinical care • Health/happiness - physical and mental health, freedom from pain, restricted mobility, expression, psychosis.

B. Relations/Communication > 1. Sample narratives • How dementia has affected our relationship: We were a reasonably happy family with 4 children, doing what most families do. Gradually, and it was gradually, over a number of years, probably about 6 or 7, tensions began to build up. Small things to begin with. C would get annoyed with the children because they didn’t want to do the things that he wanted. He would pick a fight over anything and was very unreasonable. The children stopped having friends around because their dad would embarrass them by saying silly things to them. He said he was just being friendly but he couldn't understand that teenagers don’t like to be treated like children. C had suffered from high blood pressure for a number of years and slowly started to forget things at work. Things that he had done day in day out for years. He forgot names of people he had known and worked with, lost his house keys several times and would occasionally go out, forgetting to lock the door. He became quite aggressive, losing his temper regularly at the slightest thing. He would say I had done something or moved something when I hadn’t, and I couldn’t convince him otherwise. I began going out less with my friends because I was being accused of seeing someone else and was tired of the endless questions. “Why have you got lipstick on?” “Why are you dressed up?” “Why have you washed your hair?” things that I normally did when going out. The children by this time didn’t particularly like their dad any more, and I certainly didn’t like this man. I dreaded him coming home from work. When the children were 20, 18, 16 and 9 we finally got the doctor to agree for James to see a neurologist and have a scan, but this was likely to take about a year. I couldn’t wait that long so we went privately and paid for the consultation and scan. My mind was made up. We argued so much by this time everyone was miserable. If the scan showed that there was nothing wrong, I was leaving C. I couldn’t take any more. While we were at the hospital for the scan, C had picked up a leaflet about dementia for his brother who lived at home with his mother who had just been diagnosed with Alzheimer’s. I read the booklet and was amazed at the number of similarities to C. I tried to talk to C about them, but all he would say was “I’m not like that”. Later C had more tests, then, out of the blue, I had a visit from the community psychiatric nurse and the psychiatrist. They asked lots of questions about C before I had noticed him change. Then they told me that he had dementia. Part of me already knew but I cried probably more with relief now that I knew what was causing him to behave this way. It was the same for the children. Once he began taking medication he calmed down and slowly we began rebuilding our lives. The children called them his happy pills. He became involved with Alzheimer’s Scotland Younger Persons Project and has never looked back, despite having bad days. The children have come through all of this, but I think the boys have struggled more and still do, mainly because they were younger and had enough problems growing up without having to deal with this illness. I would say we now get on as a family. The girls have their own places now and visit regularly, and the boys are at home, RR still being at school. We have all had to make adjustments in our lives to help C. Writing messages on a notice board, reminding him to take his medication, making sure that he is dressed properly for the weather. I sometimes feel trapped in the middle of everything, having had to take on all the responsibilities. I have to decide what things I should tell C about and what not to, because of how he may react as he doesn’t have as good a sense of judgement any longer. We do still get frustrated and times and argue, but no more than other families. I don’t know if C and I will ever get back to the way things were before the illness started, a lot has happened, but for me the frustrating thing about it is that C has pushed it to the back of his mind. It is still near the front of mine. We have had to start from the beginning taking a day at a time, sometimes there are good days and sometimes bad, but we are getting there. SCOTLAND CAREGIVER

B. Relations/Communication > 1. Sample narratives • I am a doctor and a care giver when I was 12 or 22 for grandfather. He gave me a choice to take a medical course or not. That is my treasure. PROFESSIONAL JAPAN

A. Choices > 1. Sample narratives • I do like to feel I have choice. I like to feel I have choice but not be overwhelmed by this. PERSON WITH DEMENTIA AUSTRALIA

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

A. Choices > 1. Sample narratives • I have spoken to others and would like to have a sure way of ending my life when I feel it is time. The website idea is great I am a widow and live alone. My only child – a daughter – lives half way across the world and has her own life. I have always been independent but worry a little about putting myself in care when I need it, ie when and on what basis should the decision be made. My second concern is about the end of life – I would like to have the choice of when to end my life. I think it is immoral to willingly allow myself to be dependent on but people with Alzheimer’s (like me) might have some trouble accessing and dealing with it – as I do. PERSON WITH DEMENTIA SINGAPORE.

L. Strengthening Services > Access to services • Initial contact with GP is crucial to both carer and pwd. GP can alert a whole raft of professionals, groups, resources, who can support and work together with the family group affected by the diagnosis. The early stage is when the pwd has an opportunity to become the decision maker in the situation. Access to family therapy to work with the family system. Ongoing input is essential to assist the family to adjust to the changing structure and roles that will inevitably follow.

A. Choices > 1. Sample narratives • It is difficult for a person with dementia, especially when the condition is severe, to make choices. After suffering from dementia, it is not necessarily possible for the person to make choices of preference, choices for the terminal period, etc. I feel it is necessary to make an advanced directive. It is not easy to decide if the choices made by a person with dementia should be respected when the choices are felt not to be suitable for the person. (But it is difficult to assess this, too) I’m looking forward to open the website!

A. Choices > Allow coping • It’s hard to take away without having some attractive alternatives. Consider the example of the decision to stop driving – the shared responsibility – person with dementia, physician, family, Dept of Motor Vehicles. Dementia-friendly paratransit should be developed, supported, accessible, affordable etc..

D. Identity/Continuity > 1. Sample narratives • Maintenance of relationships, family and social, cultural, community. Maintenance of skills and adaptation of skills to new activities. Consistency of care when support is required from support agencies, medical professionals, social activities. Care/case management by professional worker for complex situations. Care-focused support which addresses needs of carer in order to maintain the caring role with energy. Flexible funding which is available for whichever needs are identified by the person with dementia and the carer - not tied to specific/exclusive services. Familiar, or at least homely, surroundings, particularly as the disease progresses. Music, photos, written personal history, video of family occasions which prompt positive memories and emotions. Physical contact, touch etc. Presence of pets for animal lovers. Sharing of humour. Ritual, eg religious, family, social. Inclusion in planning, decision making, being offered choices and opportunities. Recognition of the caregiver in the relationship as equally in need of support in all of the areas which are new, confusing, demanding etc. due to the diagnosis of partner's/parents/others dementia. AUSTRALIA PROFESSIONAL

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

G. Creativity/Aesthetics > 2. Any other • Personal identity reinforced eg by seeing ones own art on walls, well framed. Seeing one's own photo - smiling, dignified. Receiving feedback on ones own art esp. from an artist. Using ones birth language, and jargon of choice eg science with a science oriented nurse, arts with an artistic person. Participating in preparing food - making ones own favourite receipes, smelling the aroma of food one has enjoyed in the past, being able to offer other food one has helped to make. Deciding ones own 'statement' with art materials. Having good quality music and sound, well-tuned radios, hearing live music performed in the room or lawn. The senses have a long memory and art focus stimulate sensual and emotional memories (just thing of the effect favourite songs have on the feeling of younger people).

L. Strengthening Services > 1. Sample narratives • Positive Acknowledgement of human rights for those having dementia. Enjoying being human through inclusion. Positive stimulation. Agencies/Carers/Public legislation working with families rather than for. Recognising a holistic view may be appropriate. Encouragement to work at own pace. Negative Overload of information. Taking away the dignity by lack of inclusion in decision making and doing for self. Changes instigated hurriedly and without inclusion. Facility unavailability in communities ie rooms in public buildings for dementia people to have time out when accessing public facilities. Loss of male role. Expectations that all fit into one mould (non-individuality, unavailability of specialist cultural resource to meet both the person with dementia and family need in relation to food, language, emotional support and ethnic resource. Lack of public education. NEW ZEALAND CAREGIVER

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

D. Identity/Continuity > 1. Sample narratives • Positive Be able to speak and have one's own say. Feeling valued. Emotional well being. Feeling loved. Taking time to talk with person with dementia. Let people with dementia have the choice to decide things. Try and have fun. Not always being watched. Negative Do not make people with dementia feel like little kids. Don't always assume what you give people to eat is always what they wanted. Have the respect to ask them first. NEW ZEALAND CAREGIVER

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

B. Relations/Communication > 1. Sample narratives • Positive Feeling they have real relationship with professional carer. Participation in normal social interaction eg respite does not necessarily mean separation from care partner. Opportunities for 2-3 couples to share dining, dancing, holidays together in a 'protected' environment or facilitated environment adds huge QoL for carer partner and PWD. Not only 'couples' - mothers, daughters. Sense of belonging/community. Able to give, to be thanked, sincerely, not patronisingly. If, as a professional, I can assist carers to improve their QoL by pursing more interest apart from care. If I contract to abide by PWD's decision after he/she tries a culturally appropriate activity of my suggestion. Negative Having "roles' often many - worker, provider, lover, decision maker taken away, absolved, usurped. Always having things done, be on receiving end, no sense of reciprocity. Pressure to accept service, intervention. Rushing, not active listening. AUSTRALIA PROFESSIONAL

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

K. Supporting Caregivers > 1. Sample narratives • Positive Increasing support for carer so they are happy. Good co-operation between agencies. Allowing trust, silence, space. Respect - not treating like a child. Not designing areas with fluffy dolls. Treat like adults. Maximised autonomy for PWDs whilst maintaining their safety. Negative Financial - we are in a constant battle to get funding to provide services eg I am full of great ideas to help people with dementia's quality of life after this conference - but 80% of the hurdles I will face will be financial - how do we get funding to start a Alzheimer's Care which might help PWD and their carers. Trouble getting volunteers or professional carers who have been around for ages to treat pupil like adults. Families where one person takes all the burden, especially adult-children carers leads to resentment/frustration. Trouble getting early referrals from anyone (GPs, psychogeriatricians) so we can try and help early. Society's ignorance -disgust and fear. NEW ZEALAND PROFESSIONAL

L. Strengthening Services > 1. Sample narratives • Positive Initial contact with GP is crucial to both carer and pwd. GP can alert a whole raft of professionals, groups, resources, who can support and work together with the family group affected by the diagnosis. The early stage is when the pwd has an opportunity to become the decision maker in the situation. Access to family therapy to work with the family system. Ongoing input is essential to assist the family to adjust to the changing structure and roles that will inevitably follow. Well planned use of respite care and care for the carer is an important as care for the pwd. Health Funding Systems that are designed to meet the needs of bureaucrats instead of consumers of health services. Without someone with knowledge of 'the system' it can be impossible to know how to access the health services that are available. NEW ZEALAND PROFESSIONAL

F. Enjoyment > 1. Sample narratives • Positive Relaxed, unstructured routines except meals. Freedom to walk around in a safe environment. Showing love and acceptance. Supporting caregivers. Role modelling expected care. Plenty of food and fluids available. Music playing and a homely environment. Regular family support meetings. Close relationship with families of residents and involvement in careplanning. Spending time with clients, talking about their past, ie profession, travel, etc. Respecting family members who are grieving for the loss of their loved one to this illness. Lots of humour ie staff dressing up in themes. Engaging in short conversations with residents who don't actually make sense, chatting with them makes them feel respected and 'normal'. Negative Expecting individuals to 'behave themselves'. Tired caregivers trying to rush to achieve their workload. Poor training of caregivers. No available dementia training for caregivers. NEW ZEALAND PROFESSIONAL

A. Choices > 1. Sample narratives • Positive Routine. Same things happening at the same time everyday. Remaining in a familiar environment with familiar people. Risk taking. A carer who can allow autonomy by minimising the risk and maximising choice. Recognition by family that there are changes due to dementia. Negative Other people unable or unwilling to accept or not able to cope with redirecting. Rejection by community in particular a community of friends themselves ageing who feel that they are no longer able to cope with having a person with dementia in their midst. The community imposing options for care - respite in a rest home without discussion and day care that did not meet the needs of the person with dementia. When providing care such as respite it is sometimes difficult to tell whose needs are being met. The same could be said for the decision to place permanently in a rest home. NEW ZEALAND PROFESSIONAL

E. Self Esteem > 1. Sample narratives • Positive Security arid-continuity in daily life. Continue to do tasks voluntarily and suggested for as long as possible eg making a pot of tea, feeding the cat, doing the crossword. Trust in caregiver - caregiver must be friend and enabler and consistent. Recognise that the person (with disease) likes to 'do own thing' in their own home eg chopping wood is relatively dangerous but is important for a person's quality of life - if this is the contribution they want to make. Social interaction of an adult if that is what person is used to - day care and boring activities don't suit everybody - though they may convenient for carer. Recognise what doesn't work for persons benefit - don't continue. Don't make persons life more foggy and unnecessary drab. Walking – let them go as long as you are aware where the are going. NEW ZEALAND CAREGIVER

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

A. Choices > 1. Sample narratives • Positive Touch, sound - music, safety/security, quality care of needs, decision making encouraged, connectedness to family maintained, autonomy supported. Negative Treated as disease rather than individual. Cost cutting affecting care/need/activity. Restrictions/restraint. Belittled. Taking away choices - decision making. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Positive 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

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

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

A. Choices > Safety,not overprotective • Reasonable risk. Some risk taking in order to ensure choice and involvement in activities important to the person for as long as possible

A. Choices > Safety,not overprotective • 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. Walking - let them go as long as you are aware where they are going.

A. Choices > Individual care plans • 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.

A. Choices > Non restrictive context • Resources to enable greatest autonomy - ie technology to aid people to stay in own home as long as possible, ie smart house.

A. Choices > Involved in decisions • Set up "Bubby" friendships. A person who will assist with decision making - sharing.

D. Identity/Continuity > 1. Sample narratives • Support a PWD plan "their" lives with the support of family of friends. Everybody's stories must be listened to - all have different needs - background - cultural and spiritual etc. Set up "Bubby" friendships. A person who will assist with decision making - sharing. Have fun, talk with and laugh with a PWD. Let PWD sit in the "drivers" seat. Don't take over their lives. What hinders Feeling alone - no family - community support. Being over protective and controlling. NEW ZEALAND PROFESSIONAL

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

B. Relations/Communication > 1. Sample narratives • The daughter in law has to do the care. Japanese older people do not have a choice they want to ask others to make a choice. They always look to the happiness of their children so [they] don’t want people to sacrifice themselves for them. CAREGIVER JAPAN

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

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

K. Supporting Caregivers > 1. Sample narratives • We made a decision to call ourselves carers. Not speaking of the disease but of what we have to be and what we have to do. CAREGIVER BRAZIL

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

K. Supporting Caregivers > 1. Sample narratives • We [as a family] made a choice together not to go into an institution we did not give mother a choice. CAREGIVER CHINA

K. Supporting Caregivers > Respect • • Welcoming environment/no restrictions. Feel part of the team. Involved in decision making. Using facility for family functions.