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C. Love and Trust > Valued role • - maintaining a sense of self-identity and value to others with peer support groups and social interactions and volunteer work.

D. Identity/Continuity > 1. Sample narratives • . What do you think makes up quality of life is for people with dementia? Quality of life is being able to get the most out of each day. For me as a person with dementia, this is enabled by the medication therapy I am on as well as my support network of family, friends and persons I associate with at Alzheimer’s Associations. I think that quality of life after diagnosis can depend on how you managed your life before diagnosis. If you were a person who was inquisitive and eager to learn and generally happy, then you will probably do better than a person who was more apt to let life pass them by and be a depressed type. CANADA PERSON WITH DEMENTIA

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

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

K. Supporting Caregivers > Appreciation and care • A good caregiver is so essential. Daily routine, Family an friends, lots of support. At this point in my life a support group for both myself and my caregiver.

D. Identity/Continuity > Continuity with life story • 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.

G. Creativity/Aesthetics > Activities • Activity groups such as day clubs that cater for our need and interests at a level where we can participate and achieve.

L. Strengthening Services > 2. Any other • Availability of good support services to keep stress levels within acceptable levels. Better understanding from government with action from the government so that above is available.

B. Relations/Communication > Connections • Avoid sharing support person. I'd discovered that if I talked to care giver - other than the normal hello's, that this created a tension - it took away from our relationship. Needed own relationships outside partner.

L. Strengthening Services > 2. Any other • Consistency of care when support is required from support agencies, medical professionals, social activities.

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

D. Identity/Continuity > Continuity with life story • 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.

B. Relations/Communication > Understanding by others • 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.

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

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

L. Strengthening Services > Advocacy • Having strong advocacy groups to speak on their behalf and people who can make changes.

K. Supporting Caregivers > Information • Helping carers with education groups which in turn helps person with dementia.

E. Self Esteem > 1. Sample narratives • Holistic, multidisciplinary care essential. We view carers and those with Alzheimer’s as “a package”. If you concentrate on self esteem (for all concerned) everything else falls into place. I agree about humour. In an out-patient block our rooms are the only ones where laughter comes from. It does however cause colleague prejudice – how can you laugh and take your work seriously??? We have more carer groups/meetings where carers and patients can go together and socialise. 4 week sessions lead to families contriving the groups autonomously. I love your mention of spirituality, I have believed this to be very important always (I’m a Celt). There have been times when professionals have felt this area to be too ‘unscientific’ to be valued. Choice works always, for everyone. Multidisciplinary teams must spend time to feel comfortable together, because out of team strength comes the confidence to take/share risk. I have begun to encounter sexual problems more frequently (usually impotence) and addressing that improves self esteem/life. The region I work in is very conservative in attitude, I thought the workshop inspiring – someone else thinks/feels like me! I UK PROFESSIONAL

K. Supporting Caregivers > 1. Sample narratives • I am a volunteer worker at a public health centre for people with dementia living at home, to come and enjoy themselves. There are some occasions when I get to know people, they start to tell me how they feel and I realize what is going on in their mind. It is important for people with dementia to have plenty of opportunities to express their feelings and also, caregivers should listen to what they have to say. Naturally, I feel it was worthwhile to join this conference. I occasionally forget things and sometimes wonder what would my husband do if I suffer from dementia. I hope there will be someone to support my husband if it happens. For this, I look forward to have a website available to give people necessary information and encouragement. CAREGIVER JAPAN

D. Identity/Continuity > 1. Sample narratives • I appreciate your workshop. Quality of life is also to let people with dementia to speak about themselves at the early stage of the disease and let us know what is QOL for them. Developing these support groups seems very important. Not speaking of them but with them. FRANCE CARER

K. Supporting Caregivers > 1. Sample narratives • I educate social workers. I used to work caring for elderly people. It was explained in one of the presentations today that the QOL of a person with dementia and the QOL of caregivers are interdependent. I do agree with this. However, in real life, the QOL of a person with dementia and the QOL of caregivers are often considered to conflict with each other. Especially when support is difficult, both professional trained workers and caregivers tend to consider this as a conflict. For the future agenda, I would be grateful if you could include the method of intervention to make people aware of the fact that the QOL of a person with dementia and the QOL of caregivers are interdependent. PROFESSIONAL

B. Relations/Communication > Partnered decisions • I think that both lives (mine and my main family supporter) have a very good quality of life. Both parties have had to make some changes and adaptations but all in all so far things are okay (without medications and my support network they would not be though. I would revert back to the extreme apathy that I had prior to treatment mixed with anger outbursts. The social withdrawal would return and I would not be pleasant to live with).

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.

L. Strengthening Services > 2. Any other • 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 towns and very beneficial. Maybe local AD support groups and rest home and primary coordinators of the total holistic interaction.

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

D. Identity/Continuity > 1. Sample narratives • Need for de-stigmatisation. It is difficult for younger people with dementia everywhere. It is a problem when younger people are excluded. There is not sufficient staff/training and support and training for families CAREGIVER JAPAN

B. Relations/Communication > Support groups • Ongoing support for the person with dementia is so important. Often there are facilitated support groups for care-partners but not for the person with dementia. We have found the one on one respite time to be a real blessing as my respite carer knows just when to motiveate me to do more and when to help me to slow down. With her help I accomplish things I thought were beyond me forever. Australia Personwith dementia.

B. Relations/Communication > Relieve losses,loneliness • Opportunity for social outings with groups (which are personally chosen): with one other person, with others with dementia, with those without memory problems.

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

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 Family/friends/community need knowledge of the dementias. Community education sessions provided to all age groups eg children in schools, young adults who interact with people eg bankers, police, social services, seniors in clubs, churches etc. Literature provided appropriate to these age groups and also cultural variations. Maintenance of independence and autonomy – this follows understanding and education. Carers need to be careful not to 'mother' or smother the person with dementia, each needs to understand the individual. What was their past life? What would they normally like to do? Do we need to allow the person to take some risks which are not serious safety issues? There are many choices which can be made by people with dementia throughout the day. Carers can give emphasis to thinking about looking for opportunities to give choices and feelings of the person being in control. Security/trust - maintaining a consistent approach within the home, or carers in residential care can help produce a feeling of trust. Regular routines (with input by the person with dementia) and continued communication and family, extended family and long-term friends. Appropriate touch and intimacy are helpful to feelings of security. Warmth. Sometimes basic issues of tidiness and hygiene are less important than the social interactive issues which are good feelings. Maintaining connections with old friends and clubs can be facilitated by enlisting help from those people. They can be assisted to understand the issues and enlisted to take a turn in transport and involvement. We need to think carefully about what the person has previously enjoyed doing, and use these things eg music, gardening, sport, literature, family outings etc. Stimulation can be helpful, but should not be overwhelming. This is very individual, and needs to suit the person's interest and also the stage of the disease. Respite for the carer is essentially helpful in maintaining QOL for the person with dementia. This is individual, could be in home, as an outing, or in a residential setting. Some helpful issues need to be introduced slowly, time may need to be allowed for assimilation of new ideas. NEW ZEALAND PROFESSIONAL

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

K. Supporting Caregivers > 1. Sample narratives • Positive Helping carers with education groups which in turn helps person with dementia. Role modelling for carer. Making physical contact with hand shake, hug, kiss. Negative Not listening. Not spending enough time. Making assumptions about the person. L UK PROFESSIONAL

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

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

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

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

B. Relations/Communication > 1. Sample narratives • Positive Opportunity for social outings with groups (which are personally chosen): with one other person, with others with dementia, with those without memory problems. Negative Limited one on one contact in residential settings - not being acknowledged by funding bodies in NZ - not enough care givers employed - not enough divisional therapy hours - poorly paid. NEW ZEALAND PROFESSIONAL

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

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

B. Relations/Communication > 1. Sample narratives • Positive Show interest, sincerity, good eye contact, support if appropriate, help them to make their own decisions, encouragement. Focus on the person give them your time. Physical assurance if appropriate ie give them a hug. Encourage/allow them to express their grief, pain, anger in a safe private environment. Cry with them, remain with them. Hand massage, back massage. Remove them from stressful situations. Take them for walks outside/inside. Play their favourite music or recreational pastimes they enjoy. Involve yourself with carer, talk to him/her about how they cope. Reinforcement of positive nature to them. Provision of contact supports - Initiate this yourself. Phone carer at home to assess/provide support. Develop a rapport with carer and family. Become their professional friend – make yourself available the them (PRN) especially in early stages of illness. NEW ZEALAND PROFESSIONAL

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

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 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

A. Choices > 1. Sample narratives • Positive Caring carer. Stay as long as possible in own home. Supportive family. Keep to routine (as it was) as much as possible. Allow the person to make decisions. Allow choice. Continue to be loved and cherished. Respect. To be themselves. Accept challenging behaviour. To allow independence for as long as able. To be an individual. To allow to express own feelings. To plan own path way. Listen to the music not the words. Allow risks. Support groups including PWD. Alzheimer's Society, community support workers. Conferences. Negative Over protection, taking away independence, overwatched, decisions made for me (pwd) eg food, time planning, what to wear, where to go. Treated like a child. Not treated like before. Having a stressful carer. Thinking about how the spouse of an older age is going to manage. Enjoying fun and laughter but not at time at the appropriate time and not being accepted for this. I've got a client who does this and family (not being accepted) are horrified. NEW ZEALAND PROFESSIONAL

K. Supporting Caregivers > Appreciation and care • 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.

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

B. Relations/Communication > 1. Sample narratives • Support groups for PWD so be able to share their experiences, learn skills to make daily living easier to manage and make new friendships. Opportunities for PWD to advocate for themselves - family situations and living arrangements - daily activities. PWD opportunities to express their needs - present and future to politicians. Right to day medication (subsidised) to enhance or stablise their illness. Due to financial issues with governments - maybe younger PWD had opportunities to day medication – financially beneficial as spouses able to continue working longer - or otherwise PWD need placement in care. When diagnosed and if accepted by spouse and PWD, grief counselling offered to each, separately. NEW ZEALAND

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 > Support groups • The information and support I get from computer support such as DASNI and AD Friends, Support from the local Alzheimer's Association and my church. Due to their support and encouragement I am able to carry on day by day, really.... moment by moment. The support of others with dementia really helps me a lot.

B. Relations/Communication > Support groups • The support and acceptance we receive from groups such as DASN and Living with memory loss support group.

B. Relations/Communication > Support groups • The suppport of wife and family and friends. The information and support I get from computer supports such as DASNI and AD friends, Support from the local Alzheimer's Association and my church. Due to their support and encouragement I am able to carry on day by day, really…moment by moment. The support of others with dementia really helps me a lot.

B. Relations/Communication > Understanding by others • To have a higher profile so more people in the community can understand, help and support PWD.

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

B. Relations/Communication > Partnered decisions • We both benefit if my caregiver enables me to be as independent as possible and helps me maintain my sense of self-identity. My spirits improve and so do his. A number of aspects of quality of life are the same for us, that is, parallel, i.e. if he enables me, we both improve.

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

I. Stimulation > 1. Sample narratives • What decreases quality of life for me as a person with dementia. Inaccessibility to medications and a support network Continued stress Feeling out of control with regards as to what will happen to us. CANADA PERSON WITH DEMENTIA

K. Supporting Caregivers > 1. Sample narratives • What has helped people with dementia? Having strong advocacy groups to speak on their behalf and people who can make changes. Allow people to ‘be’ themselves – carers listen to families. What things practically have helped carers of people with dementia? Carer support website. Carer training programme. Need to have more acknowledgement of need for ‘time out’. Have increased respite care hours at times suitable to the carer. Assurance there will be monitoring at residential services – an ear for team. L PROFESSIONAL NEW ZEALAND

B. Relations/Communication > 1. Sample narratives • What I think is the relationship between my quality of life and the quality of life of my main family supporter. We both benefit if my caregiver enables me to be as independent as possible and helps me maintain my sense of self-identity. My spirits improve and so do his. A number of aspects of quality of life are the same for us, that is, parallel, i.e. if he enables me, we both improve. CANADA PERSON WITH DEMENTIA

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

A. Choices > 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. My support groups both on-line and in person. Letting my friends and family know my limitations is a big help. It lets them help me without me feeling like an invalid. It lets them know how they can help me. My family has let me maintain as much independence as possible. My doctor works with me as a team and I have a say in my care plan -I feel more in control of my life this way. CANADA PERSON WITH DEMENTIA

B. Relations/Communication > 1. Sample narratives • What practical help has been of use to me in maintaining or improving my quality of life as a person with dementia? Education, understanding and support from Alzheimer's Association. Living with memory loss group and ongoing support group Support, education and encouragement from fellow DASN members Respite care for me to give my husband time out and enable him to better cope with caring for me Assistance from my respite carer with projects such as enabling me to sew again with her assistance as needed Financial assistance from our Government e.g. my husband receives a carer's pension to look after me Subsidisation of my medications Ladies club at our Respite house weekly with suitable activities Planning devices so I know what is happening, what needs to be done and how to do it so I can participate with some degree of confidence Sharing with others who have similar experiences and helpful suggestions of ways they have found effective in the same or similar situations. AUSTRALIA PERSON WITH DEMENTIA

F. Enjoyment > 1. Sample narratives • When I was 18 my mother showed signs. My father was the primary caregiver – took things day by day. I tried to escape. He accepted her changes as they came. About a year ago my father showed signs of forgetfulness – 3 days ago [he was diagnosed with] end stage cancer. Capture the happy moments and keep them precious. INDIA CAREGIVER

K. Supporting Caregivers > Appreciation and care • When she feels good, it helps me to feel better. When she is stress free, it helps me be more calm. My wife and caregiver also illnesses that require much from her and others, however she is an excellent caregiver and wife. What affects my caregiver affects me and what affects me affects her. At times I think I'm on a merry go arround. A quiet conident, unhurried, giving because she wants to assist me with my quality of life immensely. This goes for all of those that have to do with me.