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E. Self Esteem > Failure free activities • - 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.

G. Creativity/Aesthetics > 1. Sample narratives • 1. What makes up quality of life is for people with dementia? It all has to start with acceptance then comes coping skills, healthy eating exercises, I believe in Vitamin E,C B6 B12 folic acid and exelon and Nameda. My doctor and I believe my weekly lectures, travels for AD and writing the book kept my brain active. This is not to say the daily living is not a struggle but it gives me quality of life by having something special to share with people who would not alone understand. Being frail and in bed with a full time care partner. HAWAII 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

G. Creativity/Aesthetics > Opportunity to grow • Allowing me to live in my own reality and forcing yours on me instead, correcting me constantly, not allowing for change and growth on my part.

D. Identity/Continuity > Giving a person respect • Carers have to have deep unconditional respect for people with dementia. CARER USA

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

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 > 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

D. Identity/Continuity > Giving a person respect • I’ve come to the acceptance of living in the present, and realising that it is a very special privilege to be released from memories and future worries. This being in the present, continually and eternally, is a new way of living, maybe even the essence of living. AUSTRALIA

D. Identity/Continuity > Giving a person respect • Maintain dignity - please dress in day clothing not pyjamas in the lounge (hospital setting). Also part hair on the correct side!!!

D. Identity/Continuity > Giving a person respect • many centuries old ‘superstitions’ remain prominent now – need to respect this PROFESSIONAL SINGAPORE

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

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

G. Creativity/Aesthetics > 1. Sample narratives • Positive Availability to information about dementia - written, verbal, IT - when needed, where needed - even rural/remote areas. Supportive understanding partner (person with dementia has little/no choice in this). Opportunities to continue/aquire new (illustrated doctor at day centre) - skills, tasks, interests. Acceptance of family and friends of person - inclusion in family/social occasions. Safe/pleasant environment - for me it would mean being able to spend time outside. Opportunity to worship, spend time quietly and reflectively. Chance to listen to music - appropriate to one's taste. If in residential setting - opportunities to leave residential setting. Sharing responsibilities and privileges of care with others. A clear plan for future - reassurance about ongoing care. Care offered that is appropriate to language and culture of person with dementia. Negative In residential setting - predominance of medical model of care. Person with dementia being part of a 'dysfunctional' family (not much may be able to be done about this if family unwilling). View of life that doesn't see sickness/suffering as an integral part of life. Financial hardship placed on family of person with dementia. NEW ZEALAND PROFESSIONAL

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

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

K. Supporting Caregivers > 1. Sample narratives • Positive 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

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

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

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

C. Love and Trust > 1. Sample narratives • Positives:Feeling as if you are a 'valued, treasured' person. When you are honest with residents this builds trust and makes the resident feel like a real person. Negatives:Residents with AD are not deaf, so we do not have to speak boudly and at a high pitched tone to communicate. If you are not meaning what you are saying, eg "What a wonderful person you are" - do not say it, as the resident will pick up that you are fake. Has large effects on residents self-esteem and self-worth. NZ PROFESSIONAL

A. Choices > Safety,not overprotective • Security can be made by the carer without any loss of dignity or anger by being careful that the reason for the security or safety is done in such a way that the 'patient' know they are loved and want them to be safe. I have found that to tell my husband he couldn't drive any more was very hard until I asked a traffic officer to have a talk to him. This man know all about my husband and was a friend and make him understand in a friendly and caring way that he was afraid of him hurting himself or others.

F. Enjoyment > 1. Sample narratives • Security, peace of mind, being loved and wanted, to belong, to be able to have a choice, laughter is the best policy, understanding, being able to express yourself. Take time to listen to the person with dementia. We live for the moment not the day. Respect their feelings and beliefs. The biggest thing is to laugh with them, not at them. D Australia CAREGIVER

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

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

C. Love and Trust > 1. Sample narratives • Trust is a very important thing to the 'patients' and should be maintained all the way through the illness. May not be the closest family carer as the 'patient' quite often turns against them. Could be chosen by the 'patient' themselves early in their illness. Security can be made by the carer without any loss of dignity or anger by being careful that the reason for the security or safety is done in such a way that the 'patient' know they are loved and want them to be safe. I have found that to tell my husband he couldn't drive any more was very hard until I asked a traffic officer to have a talk to him. This man know all about my husband and was a friend and make him understand in a friendly and caring way that he was afraid of him hurting himself or others. NEW ZEALAND CAREGIVER

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 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

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