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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

J. Basic Comforts > Individual care plans • Avoid physical abuse by carers - family and care staff.

J. Basic Comforts > Clinical care • Cholinesterase inhibitors. Using antipsychotics sparingly.Good physical health - vaccinations, BP control etc. Adequate nutrition. Uninterrupted sleep. Not being depressed. Good eyesight/hearing. Treat physical pain, physical illness, psychosis, excess sedation, side effect of medication

I. Stimulation > Context • Environment - safe, comfortable, home-like, rich social network, access to nature, travel, physical and emotional, enriching, stimulating, not stultifying.

B. Relations/Communication > Emotional outlets • Find a physical intimacy that works for both sides.

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

J. Basic Comforts > Clinical care • Good physical care, diet. Avoid over/inappropriate medication.

J. Basic Comforts > Clinical care • Good physical care, tidy, clean clothing, tidy hair.

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

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

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).

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 > 2. Any other • 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.

C. Love and Trust > Touch and hugging • Lots of love and physical contact (if appropriate - not all people like to be touched).

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

C. Love and Trust > Touch and hugging • Making physical contact with hand shake, hug, kiss.

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

C. Love and Trust > 1. Sample narratives • Positive Caring, trained staff. Honesty. Empathy, Lots of love and physical contact (if appropriate - not all people like to be touched). Safe environment. Good communications. Choice. Good care plans for individual likes, dislikes and best way to handle or not handle each resident. Continuing activities previously done, for as long as possible. Continued family contact. Being treated as an individual. Negative Lack of training or caring in staff. Some people just treat it as a job and the residents as a name. Lack of communication. Lack of understanding. When senior staff, doctors, consultants etc don't listen to caregivers when a resident can't speak for themselves. We know these residents, in their present condition, better than anyone. NEW ZEALAND PROFESSIONAL

J. Basic Comforts > 1. Sample narratives • Positive 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 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

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

K. Supporting Caregivers > 1. Sample narratives • Positive 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

K. Supporting Caregivers > 1. Sample narratives • Positive Humour, and understanding that humour is more applicable when the person has dementia - compassionate but 'natural', 'everyday' humour. It works! Acknowledgement that (as a carer) you are doing your best, that sometimes what you say is not what you mean and to not hold it against you forever. Maintaining physical activity and socialisation for both the carer and the person with dementia. As part of a group or individually. Accepting that the carer is the person who needs to do the care plan, that the health professional can not dictate this just because the person is in care. Ensuring that the person in care is kept looking neat, tidy "as if the person is generally cared about and not scruffy, uncoordinated or in another persons clothes". For HC givers to know about what goes on for the carer - health wise, financially and socially - over and about the carer role. Negative Honesty from HC professionals, a seeming inability to cope with appropriate emotional responses -1 put this point first as, from a carers point of view, I saw the course ahead as a set of hurdles and not a straight line. A genuine desire to be 'part of the loop' with the person, the carer and the whole family - the contact being seen only as a professional encounter. Not being addressed in a condescending way - go to the person and the carer, we are not contagious. The unwillingness of some personnel - such as police - to be involved with people with dementia whom the carer is wanting and trying desperately to keep the person in their own home. I know they are busy but it is very uncorporative. NEW ZEALAND CAREGIVER

I. Stimulation > 1. Sample narratives • Positive Mental stimulation, enjoying mental stimulation, social interaction, acceptance, touch, knowledge of being loved, enjoying friendship, enjoying physical activity even limited), retaining dignity (being treated with dignity) creating involvement in crafts, music, arts), giving, fun, making choices, personal space, silence. Negative Lack of dignity (being treated as a child), talking down to not with. Not presented with opportunity for mental stimulation when you can't assess it yourself. Not being given the opportunity to listen to music that they enjoy when they can't access it themselves. Not being given the opportunity to say no or refuse ie making a choice. NEW ZEALAND PROFESSIONAL

F. Enjoyment > 1. Sample narratives • Positive Need to feel secure in home environment and yet can have some control over personal activities and/or outings. Need to laugh or make a joke of the little mistakes. Even when help is needed with buttons of zips etc. Socialisation with groups where they are accepted as they are. Good communication and physical touching, hugging most important. Lots of laughter helps any situation. Value and explore the long term memory often. Negative Decreasing QOL when people/visitors ignore the person and talk to family as though person completely incapable of thought of speech. NEW ZEALAND CAREGIVER

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

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

C. Love and Trust > 1. Sample narratives • Positive Feeling loved. By not only a physical hug (which some of my clients say they only get once a week at the centre) but by all over actions. By not feeling a nuisance and a burden on the family/carer. Touch is so important - hand/feet massage, manicures, facials makes people feel cherished and special and reduces agitation. It is hard to run away when your feet are in a nice warm foot bath or your nail or drying! Negatives Carers who have not or will not accept their loved ones situation - know it but do not accept. Resentments. Loud, raised voices - shouting orders - leads to aggression. Marriages which pre-dementia have not been happy and when dementia accentuates not very nice behaviour - education/marriage counselling is not always successful. Once again I believe love is the key. AUSTRALIA CAREGIVER

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

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

A. Choices > 1. Sample narratives • Promote quality of life by remembering each person is individual and what they want to do, or can do, on any given day or time of day, will differ from day to day. We all have good and bad days no matter what our age or our stage of dementia. God help anyone who gets me up at 7am to shower when I am elderly. Hindering quality of life by neglecting personal choice, by neglecting physical touch and caring without a sense of humour. Laugh with the person, because of the person, not at the person. NEW ZEALAND PROFESSIONAL

E. Self Esteem > Reduce stigma • Protection from verbal and physical abuse

J. Basic Comforts > Clinical care • 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.

J. Basic Comforts > Clinical care • The medications that help us to enjoy an increased time of being able to care for ourselves, at least in part.

D. Identity/Continuity > 1. Sample narratives • Treating each person with dignity. Spend quality time with person. Endeavour to include people in decision-making/at their level. Regard each person as spiritual being (not necessarily religious) and valuing each one's personhood. Listen, really listen to them. Work with them according to the skills they still have. Good physical care, tidy, clean clothing, tidy hair. Holistic care, physical, spiritual, mental. Don't take away all the opportunities to do things - to take an initiative. Sufficient opportunities for carer to have time out for rest/refresh. Have fun-time, for laughs. Physical touch/where appropriate. Encourage memory times, what they do remember is important. NEW ZEALAND PROFESSIONAL

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

I. Stimulation > Context • Well-designed physical environment.

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

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

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

J. Basic Comforts > Clinical care • • Good clinical care to prevent health crisis.