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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

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.

E. Self Esteem > Reduce stigma • Avoid people who treat us as if we know nothing because we have a diagnosis of dementia.

B. Relations/Communication > Understanding by others • Direct some Alzheimer's awareness programmes at school children - this will help to improve the understanding of this group of society and encourage better communication with relatives, family friends with AD.

K. Supporting Caregivers > Appreciation and care • Education and awareness for both the person with dementia and the carer.

D. Identity/Continuity > 1. Sample narratives • First we need to raise awareness for the public and for the medical profession, this needs strategy. To improve quality of life publish rules and policy. There is a need to bear and care. If the person with dementia is in care home we need to have their life story as much as possible. Information is important in general and in particular. PROFESSIONAL JAPAN

H. Spirituality > 1. Sample narratives • Husband had diagnosis of Alzheimer’s made 11 years ago. The only thing I ask the Lord is love and patience, love understanding and patience. CAREGIVER DOMINICAN REPUBLIC

J. Basic Comforts > For specific complaints • I am not able to do the job that I did prior to diagnosis and this is something that I miss very much. I have a fixed income now and that is not what I had hoped for in my life. I am not allowed to drive. I had to move back home with my family. I am lucky to have a wonderful family and it is working out well, but I enjoyed owing my own apartment and being independent.

J. Basic Comforts > Clinical care • I think many of the biggest offenders in persons getting depressed over the diagnosis and doing nothing are the doctors. They truly hand out a death sentance instead of giving the positives along with it.

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

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

B. Relations/Communication > 1. Sample narratives • I was very independent, very happy. All these qualities attracted him to me, now I’ve changed. We had a great intimacy before we developed the illness. Need new ways of communicating. How to do that dance better? Was even tempered, now I flare up or I cry. It makes me mad when he doesn’t listen to me. My daughters’ lost their father in 1988 when they were 12 and 15. When this happened they were terrified of losing me – lots of denial going on. - You’re not trying hard enough. - Just exercise your brain. Eventually they came around – they do most of the work, I participate. They shield me. Communication is the key to maintaining a good relationship. Patience, patience and more patience. Learn different techniques. I’m angry he’s not listening – what’s it going to be like in 5 years. Humour, generosity, set limits on behaviour. Find a physical intimacy that works for both sides. CANADA PERSON WITH DEMENTIA

L. Strengthening Services > Staff training • Improve the education of health professionals working with dementia clients through workshops which include carers and sufferers. This will aim at improving health professionals ability to improve the overall QOL for dementia sufferers. Improved education for General Practitioners to assist in earlier diagnosis of Alzheimer's disease.

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

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 > Giving a person respect • Maintaining prior cultural perspectives. Encouraging previous strengths. Appreciating the contribution a person with dementia makes. Resisting from 'testing' the person with dementia. More public awareness of the experience of dementia. Removing 'medicalisation' of dementia. Why does someone become a 'patient' on diagnosis?

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

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

D. Identity/Continuity > 1. Sample narratives • Positive Accepting where the person of dementia is at. Timely assessment – reassessment and assistance so that whole family is supported. Promoting independence and a positive characteristic - living. Maintaining prior cultural perspectives. Encouraging previous strengths. Appreciating the contribution a person with dementia makes. Resisting from 'testing' the person with dementia. More public awareness of the experience of dementia. Removing 'medicalisation' of dementia. Why does someone become a 'patient' on diagnosis? Professionals speaking to and listening to people with dementia, rather than concentrating on their carers. Negative Being impatient with the person - not giving them time to live life at their own pace. Not allowing independence to carry out usual daily routines. Withholding information on diagnosis/services - or not giving opportunity to continue accessing information. NZ 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

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

B. Relations/Communication > 1. Sample narratives • Positive Touch - carer to pwd - means of communication, generates confidence: PWD to carer - communication, awareness of other person, social contact. Music - pwd always enjoyed music before diagnosis, continues to enjoy music - classical, jazz, folk - generates awareness of surroundings/responses, often seems to come to life, tries to speak ,may communicate in single words like love/lovely/mention name. Food – enjoys her food, may respond to certain types of food eg sweets - response may be "mmm". Massage - useful means of communication and maintaining social environment. Aromatherapy - sometimes helps maybe by developing good feelings. Social contact is important to be maintained on a regular basis to keep contact. Religion - need to continue normal religious experiences even if the feeling of the 'carers' think that pwd may not fully understand. Personal experience shows that pwd - even in an advanced stage of dementia – has more understanding than is often credited. It is therefore essential to keep activities and experiences of daily living as normal as possible. Negative Insufficient carers to meet needs of facility. Medical problems not always appropriately dealt with or followed through - actual case resulted in development of MRSA. Often placed too near TV in lounge/common room. Care staff lack appropriate training. Staff talking about pwd in front of pwd in a negative way - can observe negative response of pwd. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Positive Treated with dignity - accepted of who they are - in spite of their progression of disease. Knowing that someone cares and accepts them - who will take time to explore community and enable them to explore participation to enable them to participate within their community. Being heard and enabled to participate or just be as they want to - to have a choice, take time to develop relationships and stay there till no longer required - by client or caregiver. Work alongside them till able to adjust/accept that no longer able to manager on own safely - being aware of safety v autonomy. To have fun, a giggle, even if unable to verbally communicate can still enjoy things. Maintain interests/interactions, even adapt them so can still participate in family - continue with sense of belonging. They are still unique people - in spite of dementia. Safety in the home - awareness of needs there if other medical problems or sensory impairment. Treated as unique individual persons and adjust to their uniqueness, their physical, mental and spiritual dimensions. Negative. Over-stimulation, fatigue not noticed by caregivers or not understood. Doing things or made to do things they do not want to do and have no interest in. Inappropriate environment - where misinterprets things. Frequent changes of environment. People with dementia respond to the emotional context and if someone does not care pick it up quickly - or in a hurry then behaviour changes. Being controlled. People not taking time to adjust to the individuals (pwd) needs - expecting them to fit into a mould - when they have their past life stories. Social isolation and neglect. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives • Positive Use of humour and laughter. Lessen anxiety by security and fun – enjoying life part of QOL. Involvement, control in own life - choice, empower. Lessen anxiety by acknowledging illness and needs - ie explain same concerns every day so that the feeling of confusion and anxiety lessened 'I told him yesterday, he won't remember if I tell him again so why bother'. Acknowledging person and individual life history - keep emphasising the individual in activities, conversation or choices that are offered (ie relevant to person). Support carers - respite, listening, asking what would be helpful, supportive environment where time can be spend with person with dementia (as opposed to general public where awareness is not yet the best). Public awareness of issues faced by people with dementia, especially regarding the person as an individual - acceptance, support, helpful and with interactions. Some risk taking to ensure choice and involvement in activities important to the person for as long as possible. Resources to enable greatest autonomy – ie technology to aid people to stay in own home as long as possible, ie smart house. Negative Disregard for person - ie talking about someone in front of them as if not there. Assumptions by people who do not know and fear ie loss of abilities in some area - loss of abilities in all areas (unable to communicate verbally - unable to feel or understand). Stigma, uncaring interactions and discrimination and discounting the person. NEW ZEALAND PROFESSIONAL

B. Relations/Communication > 1. Sample narratives • Positive Opposite of negative. Negative New acceptance of person as they are. Judgmental attitudes. Insecurity. Attitude (poor). Instability. Lack of belonging. Lack of choice. No close relationships (a) family; (b) friends; (c) professionals. Lack of cultural respect. Lack of history interest (past). Lack of social circumstances. Lack of finances. Lack of information (appropriate and timely). Poor diagnostic techniques. Lack of early intervention. No individual entered care. Over protectiveness. No promotion of independence. Family taking over too soon (decisions, risks etc.) Poor unstimulating environment. Lack of investigating other medical issues(holistic). Poor attitudes to the aged in general (professionals/public). Lack of public awareness and understanding. Refusal to carry on life as "normal as possible". Lack of humour. Treatment as a child. Enforcement into activities. Lack of sensible risk taking. Non-acceptance of past roles/status etc. Poor communication techniques (verbal/non-verbal) alternative ways etc. Lack of creative measures in coping with the illness and behaviours. Poor opportunity to express feelings. Lack of empathy-compassion. Lack of physical contact appropriate). Failure to understand sexuality issues (esp. by professionals/residential care facilities). Failure to encourage personal interests (past and new). Failure to recognise fears. Inappropriate locking of facilities for dementia people (not only wanderers). Failure to recognize male/female differences. Lack of social normality (hairdressers, coffee shops etc.) No/poor use of translators. Limited facilities (culturally/socially appropriate). Limited appropriate resources. AUSTRALIA PROFESSIONAL

J. Basic Comforts > 1. Sample narratives • Positive Work with care givers on nutrition education to enable them to offer appropriate foods with nutritional adequacy over the progression of the disease. Work with care givers to encourage eating environment/equipment that the client can easily manager eg beaker feeding cups, foods provided which can be easily eaten with fingers. Provide commercially produced liquid nutritional supplements for clients unable to prepare or eat normal meals (with government subsidies). Provide safe food preparation environments – install smoke alarms attached to remote control monitoring centres (funded by the government). Improve the education of health professionals working with dementia clients through workshops which include carers and sufferers. This will aim at improving health professionals ability to improve the overall QOL for dementia sufferers. Improved education for General Practitioners to assist in earlier diagnosis of Alzheimer's disease. Direct some Alzheimer's awareness programmes at school children - this will help to improve the understanding of this group of society and encourage better communication with relatives, family friends with AD. NEW ZEALAND PROFESSIONAL

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

> • Public awareness of issues faced by people with dementia, especially regarding the person as an individual - acceptance, support, helpful and with interactions.

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.

J. Basic Comforts > For specific complaints • Safety in the home - awareness of needs there if other medical problems or sensory impairment.

G. Creativity/Aesthetics > 1. Sample narratives • What decreases my quality of life? I believe denial is one of the things which keep people in a decreased quality of life. Also too much watching TV which takes less brain power than sleeping. I am sorry to say but I think many of the biggest offenders in persons getting depressed over the diagnosis and doing nothing are the doctors. They truly hand out a death sentance instead of giving the positives along with it. HAWAII PERSON WITH DEMENTIA

D. Identity/Continuity > 1. Sample narratives • What decreases quality of life for people with dementia People who treat us as if we know nothing because we have a diagnosis of dementia Fear of rejection because of our diagnosis or things we do or say Our lack of self-esteem because of the areas of competence we have lost. Fear of being admitted to hospital because of the treatment we receive. Lack of respect for us as people The restrictions placed on where we can go because of our loss of tolerance e.g. to noise, crowds etc. Forgetting what has happened, feeling like we are left out of conversations because we can't remember what the conversation refers to Loss of ability to read because you can't remember what was on last page or paragraph Loss of independence when you can't drive and are dependent on others when you want to go places or do things Getting lost which means you have to have someone with you when you leave home even in familiar places. Needing supervision with familiar tasks such as cooking, gardening, housework, shopping ----------------------------------------- AUSTRALIA 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 am not able to do the job that I did prior to diagnosis and this is something that I miss very much. I have a fixed income now and that is not what I had hoped for in my life. I am not allowed to drive. I had to move back home with my family. I am lucky to have a wonderful family and it is working out well, but I enjoyed owing my own apartment and being independent. CANADA PERSON WITH DEMENTIA

A. Choices > 1. Sample narratives • What makes it worse: Talk over/around/down to a person. Poor physical care, diet. Over/inappropriate medication. Restrictive attitudes. Being regimented in daily routine/individuality still applies. Do not assume we know what they are thinking. Public perception and understanding. Lack of education and experience. Denial of wider family and friends of situation. NEW ZEALAND PROFESSIONAL

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