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E. Self Esteem > Failure free activities • Willingness to do “off the wall” activities and create a failure-free environment.

F. Enjoyment > 2. Any other • - being enabled to have fun and do life-enhancing activities and social interaction

J. Basic Comforts > For specific complaints • - decreased reading, comprehension, driving and cooking skills; - decreased tolerance and enjoyment of cultural activities, travel, entertainment, social interaction; - decreased flexibility in thinking, therefore poorer problem solving. - frustrations from memory difficulties, losing things, language problems, etc. - shift in relationship between me and my spouse - he is more care-giver than equal; a lot of our activities together are determined by my decreased abilities and decreased tolerance and energy - we have had to make more fun and enjoyment with less.

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.

E. Self Esteem > Failure free activities • . Social activities that I feel comfortable with, being able to live at my comfort level, things around me that I am comfortable with and that I recognize,

F. Enjoyment > 1. Sample narratives • . What improves quality of life: - being enabled to maintain independence to the degree possible; - being enabled to have fun and do life-enhancing activities and social interaction; - maintainance of a strong and positive self-image. CANADA PERSON WITH DEMENTIA

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

H. Spirituality > Special ceremonies • Arrange facility activities around person and family life eg celebrate wedding anniversary in the facility.

A. Choices > Allow coping • 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.

A. Choices > Safety,not overprotective • Being included in activities and allowed to take time to get things wrong. Being able to do things their way and take chances.

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 > Keep communicating • Concentrate more than normally on non-verbal activities and inter-actions.

B. Relations/Communication > Quality time • Do things together each day. One on one. Sharing feels, fun. Singing together. Time to be understood. Time to understand. Have a book for activities you are doing together.

G. Creativity/Aesthetics > Opportunity to grow • Engaged with world - through being given opportunity to work on art activities eg painting, line dancing, oral archives.

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

D. Identity/Continuity > Continuity with life story • Give opportunities for physical expression of memories – eg show how things work (like work tools), dance to time-appropriate music, sporting activities (judo example – 94 year old blackbelt with dementia), gardening.

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

F. Enjoyment > 1. Sample narratives • Have moments to look forward to in the week. Have things person in dementia can do with carer and others. Generate manageable tasks. Create new social networks of families who are affected and who share problems and possibilities. Lots of humour, including people who support people with dementia, and willingness to do “off the wall” activities and create a failure-free environment. Give opportunities for physical expression of memories – eg show how things work (like work tools), dance to time-appropriate music, sporting activities (judo example – 94 year old blackbelt with dementia), gardening. All the above involve sensory stimulation and recall of past activities which can be revisited with success. D 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!

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

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

D. Identity/Continuity > 1. Sample narratives • Improves Anything that helps improve memory, thinking eg reminders, cues, medication. Not being confronted or embarrassed by errors. Continuing respect for the individual as the individual they are and were. Tolerance by other people for angry outbursts are episodes of frustration over things they can no longer do. Continuing to do as much of the things they used to do – for as long as possible. Being allowed to do things slowly. Keeping active and maximising activity for as long as physically positive. Decreases Presumption of ability or of being invalid once diagnosis is made. Over- protection. Not being able to continue with hobbies but also being forced to continue with activities when no longer able to do these or finding these a struggle. Being forced to be alone when they feel more secure in the company of others. AUSTRALIA PROFESSIONAL

A. Choices > 1. Sample narratives • In a residential setting. Positive. Being able to voice/vent their feelings (as you and I can do), and not being made to feel that their reactions are on 'annoying' side effect of having dementia. Carrying on with activities that you enjoyed at home. Being 'flexible' in all aspects of a dementia patients life. There is no room for regimented routines. Follow only the routine the dementia patient finds comforting. Regular family visits. Regular outings. Stimulating visual/hands-on products. (Boredom is cruel). Negative 'Taking over' (by caregiver) be it choices/ending sentences/making all of your decisions for you when you still have the capacity to do it yourself. Not being listened to or taken seriously, because you are perceived to be 'non-compus- mentis'. Being forced into activities you have no interest in. Being 'told off like a naughty child by an uneducated carer. Being over-medicated and reduced to a 'zombie' like state. NEW ZEALAND PERSON WITH DEMENTIA

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

E. Self Esteem > 1. Sample narratives • My son was 16 when he volunteered to work in an ALD day care center in order to fulfill a high school requirement for community service. He had never been around anyone with dementia and had no idea what to expect and what his responsibilities would include. When he started work he was shown around the large room where the clients spent their day and where the bathrooms were located. He was told that one of his activities was to keep an eye on the male clients when they went to the bathroom so that if they had any difficulty, he might be able to assist them. About 4 days later he came home and told me that he was enjoying the experience and becoming more familiar with the routine but that he had had an experience that day that really made him know why his job was important. He had seen a man go into the bathroom and stay there for an unusually long period of time. He went to the bathroom door and knocked and heard sound of crying on the other side. He opened the door a crack and saw the man with his pants opened and turning from the sink to the toilet to the wastepaper basket in desperate frustration and tears. My son then pointed to the toilet and said, “I’m sorry to interrupt. I can see that you are going to use the toilet here. I’ll be outside the door if you need me.” He then closed the door and soon after the client came out looking relaxed and calmed. “I realized that what my job was really about was helping this man to save face”, he explained to me. USA Caregiver

A. Choices > Individual care plans • 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.

F. Enjoyment > 1. Sample narratives • People with dementia are often open and can enjoy many different activity options they never did in the past. D CARER ISRAEL

F. Enjoyment > 2. Any other • People with dementia are often open and can enjoy many different activity options they never did in the past.

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

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

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

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 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

L. Strengthening Services > 1. Sample narratives • Positive Interaction from initial diagnosis to final stages of disease with same team of supports - eg geriatrician, Dr GP, educators, carers, careworkers, rest home with day care, respite care, full time care Stage III dementia facilities. Able to be accomplished in smaller NZ towns and very beneficial. Maybe local AD support groups and rest home and primary coordinators of the total holistic interaction. Negative Lack of staff (in Rest Home Situations) education in dementia in NZ eg practical help and activities available for individual cases if they arise. This applies especially to the smaller rural communities where it is expensive to get people to come and educate dementia staff. Theories are great but not always practical when you are working in a 'hands on' situation. (Tutors, teachers etc are often people who have not had practical experience). NEW ZEALAND PROFESSIONAL

C. Love and Trust > 1. Sample narratives • Positive Keeping to a routine. Being able to continue activities that have been enjoyed in the past. Feeling safe. Being able to eat what you like when you like. Being told a person's name. Negative Asking questions. Changing arrangements. Being placed in an unfamiliar situation. Being asked to change routine. Being reminded of what has been forgotten. NEW ZEALAND CAREGIVER

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

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

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 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 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

D. Identity/Continuity > 1. Sample narratives • Positive. Involve family/main carer in all aspects at care planning. Have staff hear the family's story and include the detail into persons life in a care facility. Include carer and family in facility life. Arrange facility activities around person and family life eg celebrate wedding anniversary in the facility. Identify key QOL scale points and have this as part of on-going assessment of person. For person at home - enable carer to be assessed to identify illness but also provide opportunity to discuss any concerns/symptoms they may have. Appropriate touching by staff - all kinds of touching by family/friends. Offer to include extended family in 'support group' or similar. Heir/sibling need is often overlooked - to be involved in discussion on how to 'help'. Allow individualisation - at all levels - home and in care. Negative Carer not able to complain about poor quality of life services. Do not know how. Not feel welcome to raise concerns. Afraid their family member may be treated badly as a result. Physical abuse by carers - family and care staff. Insufficient time given to positive, individualised activities in residential care. NEW ZEALAND PROFESSIONAL

I. Stimulation > Moderation • Providing stimulating activities in moderation. Over stimulation often results in agitation as loud or inappropriate music also can do.

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 > 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.

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

A. Choices > 1. Sample narratives • What has happened that has decreased my quality of life as a person with dementia - decreased reading, comprehension, driving and cooking skills; - decreased tolerance and enjoyment of cultural activities, travel, entertainment, social interaction; - decreased flexibility in thinking, therefore poorer problem solving. - frustrations from memory difficulties, losing things, language problems, etc. - shift in relationship between me and my spouse - he is more care-giver than equal; a lot of our activities together are determined by my decreased abilities and decreased tolerance and energy - we have had to make more fun and enjoyment with less. CANADA PERSON WITH DEMENTIA

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 I think is the relationship between my quality of life and the quality of life of my main family supporter. We have certainly seen a great reversal of roles since my diagnosis. ‘G’ has had to take over some of the things I was responsible for but I can no longer do. ‘G’ has had a real drop in his quality of life. From being pastors of a church with all the planning and activity that entailed to living day to day, depending on what my condition is that day. While he is quite happy to care for me he no longer has the personal satisfaction of his previous work as well as his concern for me and my loss.I would add though at this point that this varies from time to time. As we face each challenge and find the ways to best handle each situation we find that our quality of life comes up again. Also though there are times when he has more concerns than I do, as I don't always realise the problems I am having or causing. In many ways I think my quality of life is now better than his as he has to take the responsibility for everything. It is true to say that our quality of life is linked together and definitely both affected by the problems caused by dementia. ----------------------------------------- AUSTRALIA PERSON WITH DEMENTIA

E. Self Esteem > 1. Sample narratives • What makes QoL worse: Being over organised. Assuming what I need/want. Not being asked for opinion, assuming I can't. Over protection - "let me take a risk". Day care - make to do activities I hate - cooking, residential care. People who talk across PWD - 'assuming I'm deaf and stupid'. I Australia CAREGIVER

E. Self Esteem > 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. - development and application of personal coping strategies to increase independence and control of my own life; - maintaining a sense of self-identity and value to others with peer support groups and social interactions and volunteer work; - doing fun and creative activities that give me a positive attitude and good feedback about myself. - maintaining the highest level of health and fitness. - coming to terms with my limitations; changing (reducing) expectations of myself and how much I can do; reducing the standards I used to set for myself - this leads to acceptance and serenity and more positive living. CANADA PERSON WITH DEMENTIA