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H. Spirituality > 1. Sample narratives • As a Chaplaincy Assistant in our local hospital I organise a team of volunteers who visit the wards inviting everyone to the multi-denominational service on Sunday mornings. Those with dementia often express a strong desire to join us. But invariably staff advise us not to bother because ‘they’ll be disruptive’ or will want to wander. I assure them that (as I have experience as a carer) we will watch over them and take responsibility for their safe return. It has never been necessary to escort anyone from the room because of disruptive behaviour H4, in fact even the most severely affected persons have been seemingly enthralled watching the Minister and enjoying the spiritual moments, absorbing the calmness and atmosphere, especially the hymn singing. It seems to me that RGNs [registered general nurses] need to be educated regarding the needs of dementia patients, as they (mostly) seem to regard them as a nuisance, as they do not have time to give the personal attention that my volunteers are able to offer. PROFESSIONAL UK

H. Spirituality > 1. Sample narratives • As a nurse working in a rest home I have found that spirituality in the elderly with dementia is very important to them whether it be by sitting quietly and feeling connected to God or enjoying creativity or enjoying others entertaining them. My own mother who has dementia would like to go to church every day. She was/is a very religious person and helps out in various ways in her church. When she is in church she just sits there and absorbs the atmosphere around her. People have said they enjoy sitting near to her, Her spirituality invades them. My mother responds well to be called by her first name. She will not know who the person is who is talking to her but smiles and greets this person because she knows intuitively that that person is a friend and will not hurt her. She now goes twice a week to an Alzheimer group where she participates in games and has good social interaction with those other people there. As I work I have a carer coming into help mum for some of the time I am away. She feels safe and secure with ‘R’ who she has named Jane. Mum treats ‘R’as part of the family and welcoming when she arrives. At times she will get angry and verbally aggressive with her as she does with me. I was told that mum didn't have delusions but fractionated images that were real to her. She has 2 children and her images are about her children at different times in their life. At times it is difficult to tell which baby or child she is talking about when she is talking to me her adult daughter. She might say "H, where is that ‘H’ is at someone place". I often placate her by telling her she is in Christchurch with my sister which she accepts. We live in Napier. J NEW ZEALAND PROFESSIONAL

G. Creativity/Aesthetics > Activities • As I work I have a carer coming into help mum for some of the time I am away. She feels safe and secure with 'R' who she has named 'J'. Mum treats 'R'as part of the family and welcoming when she arrives. At times she will get angry and verbally aggressive with her as she does with me.

A. Choices > Safety,not overprotective • Being able to choose within boundaries of safety and routine suitable to resident.

C. Love and Trust > 1. Sample narratives • Being able to choose within boundaries of safety and routine suitable to resident. Love and care showing through in your individual care, body language. Staff levels with time to give to the resident when you see, love and care. What makes it worse: let me do it - within the safe environment. Regimented Unit, time to do, eat, shower, sleep. Talking about or around the person. Staff levels not adequate to cope with situations that arise when you see love and care. NEW ZEALAND CAREGIVER

K. Supporting Caregivers > 2. Any other • Day carer relief provides opportunities for both carer and person with dementia to relate with others free from the anxieties - for carer: security of knowing pwd is safe and pleasurably involved, enables interest pursuits-for patient: security of knowing the people at centre (always same).

A. Choices > Safety,not overprotective • Environmental: by providing a safe environment for patients especially at night to overcome problem of night wandering. I have worked for 12 years in a secure specific dementia unit with mainly D6 patients. I was sitting next to a little, frail 93 year old lady about 4'8" when another patient male about 6'2" walked past. This little lady was extremely confused but had an occasional lucid moment and she said to me 'I'm scared of that man, he follows me and sometimes comes into my room at night'. Consequently the bedroom doors in our unit were cut in half to make a stable like door, the top half left open at night but the bottom half closed with a latch lower down on inside so as to keep wandering patients out. I felt for this little lady who most of the time was not able to express her feelings but could feel her fear over this situation.

A. Choices > 1. Sample narratives • Excellent presentation. Some comments: 1) “Being stopped from doing things”: consider the example of the decision to stop driving – the shared responsibility – person with dementia, physician, family, Dept of Motor Vehicles. It’s hard to take away without having some attractive alternatives. Unless dementia-friendly paratransit is developed, supported, accessible, affordable etc the topic of driving seems to be widely pushed aside. 2) Value of Family caregiver/care experience: Yes, I do highly value the family and person with dementia. However, let’s talk in terms of “partnership” among family, professional and pwd. Eg in studying wandering behaviour, caregivers reported on strategies to respond to wandering, one eg stated “I don’t have a problem with wandering, I sleep at the threshold of the front door and feel my wife step on me when she tries to get out” Another, “He takes the dog – and the dog knows the way home”. Another, “The police always bring him home”. Clients and professionals have a role in helping caregivers assess their strategies. 3) Interdependence – cg & prof. In a study I conducted several years ago on why caregivers did not follow through on professional recommendation on home adaptations, one variable which proved to be interesting (sample too small – n=40, I don’t recall sig). However, we looked at how ‘institutional’ the adaptation was – were caregivers less likely to try adaptation if it required a change in their environment? 4)Communication. Lawton’s Philadelphia Geriatric Affect Scale and Hindley/Volves assessment of PAIN in late stage dementia. (Helpful in looking at measurable mean in assessing communication). USA PROFESSIONAL

A. Choices > Non restrictive context • Freedom to walk around in a safe environment.

B. Relations/Communication > 1. Sample narratives • How dementia has affected our relationship: You have heard from my wife about the deterioration in family and social relationships, stretching over a number of years, and which caused very deep wounds on either side. Though the scabs have healed, the scars still remain deep inside, though on the surface, the signs are growing fainter. But will they ever heal? Only time will tell. My behaviour caused a breakdown in communication with my wife and family, and almost led to a divorce as there was no indication that I had an illness causing the changes in me. Now there is a reversal of roles. My wife is now the man in the house, working as the breadwinner while I stay at home. She makes all the financial decisions, while I struggle to manage the complexities of a few pounds pocket money.Dealing with family matters, while I just can’t make up my mind on anything, and forgetting what I have decided, when I do decide. Dealing with the security of our house, while I gaily swan out, leaving doors and windows unlocked. Taking my place at school parent’s evenings while I stay at home in case I cause a scene. Dealing with the hazards of driving, while I admire the scenery, and so on. She has to shadow me, to protect me from myself, and double check everything I do. She doesn’t trust me any more and it’s hard to see how she can hold me in the same regard, or treat me with the same respect, as she once did. Have I become a burden or a liability to her? When dementia walked in the door, did romance fly out of the window? What keeps her going and motivated, love or duty? How does she cope when things become too much to her and she can’t turn to me? The answer is, she is one in a million and takes everything in her stride. She has grown broad shoulders and has taken over the role of, what is in effect, a one parent family. You could say my quality of life is good. I have little responsibility and get looked after. It was only while writing this that I realised I have a cushy number. Time does not permit me to say more, but I will finish by sharing with you the words from a song from Gigi (I Remember It Well, performed by Hermione Gingold and Maurice Chevalier), which is typical of our daily conversations. SCOTLAND PERSON WITH DEMENTIA

H. Spirituality > Special ceremonies • I assure them that (as I have experience as a carer) we will watch over them and take responsibility for their safe return. It has never been necessary to escort anyone from the room because of disruptive behaviour PROFESSIONAL UK

J. Basic Comforts > 1. Sample narratives • Improvements Environmental: by providing a safe environment for patients especially at night to overcome problem of night wandering. I have worked for 12 years in a secure specific dementia unit with mainly D6 patients. I was sitting next to a little, frail 93 year old lady about 4'8" when another patient male about 6'2" walked past. This little lady was extremely confused but had an occasional lucid moment and she said to me 'I'm scared of that man, he follows me and sometimes comes into my room at night'. Consequently the bedroom doors in our unit were cut in half to make a stable like door, the top half left open at night but the bottom half closed with a latch lower down on inside so as to keep wandering patients out. I felt for this little lady who most of the time was not able to express her feelings but could feel her fear over this situation. NEW ZEALAND PROFESSIONAL

A. Choices > Safety,not overprotective • Keeping the person safe where ever they are.

F. Enjoyment > Humor and laughter • Lessen anxiety by security and fun - enjoying life part of QOL.

B. Relations/Communication > Partnered decisions • Let’s talk in terms of “partnership” among family, professional and pwd. Eg in studying wandering behaviour, caregivers reported on strategies to respond to wandering: one stated “I don’t have a problem with wandering, I sleep at the threshold of the front door and feel my wife step on me when she tries to get out” Another, “He takes the dog – and the dog knows the way home”. Another, “The police always bring him home”. Clients and professionals have a role in helping caregivers assess their strategies.

K. Supporting Caregivers > Appreciation and care • Now there is a reversal of roles. B is now the man in the house, working as the breadwinner while I stay at home. Making all the financial decisions, while I struggle to manage the complexities of a few pounds pocket money. Dealing with family matters, while I just can’t make up my mind on anything, and forgetting what I have decided, when I do decide. Dealing with the security of our house, while I gaily swan out, leaving doors and windows unlocked. Taking my place at school parent’s evenings while I stay at home in case I cause a scene. Dealing with the hazards of driving, while I admire the scenery, and so on.She has to shadow me, to protect me from myself, and double check everything I do. She doesn’t trust me any more and it’s hard to see how she can hold me in the same regard, or treat me with the same respect, as she once did.Have I become a burden or a liability to her?

D. Identity/Continuity > 1. Sample narratives • Nursing background, researcher and training family care giver. Culture’ is also an important element to be part of QOL. Preserving individual’s social culture helps PWD to live in a more comfortable life as disease progresses. Since person with late stage of dementia often lives the life in the past. Chinese people would feel safe and happy when one continues to live own cultural life styles. PROFESSIONAL HONG KONG.

L. Strengthening Services > 1. Sample narratives • Positive Acceptance of dementia by the caregiver. Being informed and aware about dementia. Kinship. Encouraging the person to take each day as it comes. Safety. Safe environment, if possible reformation of the interior to make it safe for someone who wonders. Encouragement to continue activities they have enjoyed so far. Understanding and awareness of people around you, neighbours, society as a whole. Less tension among family members, burden sharing. Respite for carer to balance fatigue of caring in severe stages. Group homes or day care at a community level. These should be small-unit personalised care - not custodial or supervisory. Understanding of accompanying illness (eg glaucoma, diabetes). Walk with the person with dementia into the twilight area with confidence and pride in the individual, in his/her spirit, personhood. Negative Denial of the condition of dementia. Displaying anger and frustration at the failing cognition. Lack of awareness about the severe stages of dementia. Hiding it from friend and neighbours. Withdrawal from life/living itself (being isolated - not being involved in any activities). JAPAN PROFESSIONAL

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

K. Supporting Caregivers > 1. Sample narratives • Positive Day carer relief provides opportunities for both carer and person with dementia to relate with others free from the anxieties - for carer: security of knowing pwd is safe and pleasurably involved, enables interest pursuits-for patient: security of knowing the people at centre (always same). Security of being reassured when needed. Security of being warmly welcomed. Pleasurable experiences. For both - encouragement, listening ear, added colour to lives. Negative Day Care Relief - change of environment presents anxiety. This needs much reassurance. 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 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

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

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

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

A. Choices > 1. Sample narratives • Positive Very individual - let individual make decisions/give time to make decisions. Let individual choose. Allow person to express likes, dislikes. Try to provide for the likes. Safe environment — pleasant environment. Provide company but in small numbers and not for too long. Provide lots of fun, we need to laugh. Let me eat what 1 like. Tell me something lots of times to help me remember. Provide a secure, loving environment. Communicate clearly and slowly. Take person out to do the things he/she has always enjoyed doing eg window shopping, walks, movies. Negative Do not make me do the things I don't like, I have never liked because you think it is good for me. They are not good for me! Don't remind me that I have forgotten. NEW ZEALAND PERSON WITH DEMENTIA

D. Identity/Continuity > 1. Sample narratives • Positive Love, meaningful personal relationships, security and safety, free from financial worries, ability to live one day at a time, time and understanding to make choices, peace of mind, serenity, having fun, social interactions within a community/groups, touch, meaningful activities. Negative Other people's judgements, discriminations, poverty, being told what to do and when to do it, being treated like a child, being unloved, mistreated, talked down to, treated like a number by the professionals, professional "'experts' know it all, they know best. NEW ZEALAND 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

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

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.

A. Choices > 1. Sample narratives • To have patience - offer help - but don't take away independence. To have security - to have familiarity. To see happy smiling faces - to be touched if that is that they like. To be understood, not patronised. Not to be reminded of bad things which may have happened. Negative Sometimes the carer! Insisting on a bath or shower daily - so what if you don't - has anyone ever died from NOT having a bath!! Being treated like children. Having to do things that they do not want to do. Denial. Loss of rights. Sometimes too much knowledge. 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

C. Love and Trust > Trusting relationships • Trusted person may be chosen and not be a member of the family: As I work, I have a carer coming to help mum for some of the time I am away. She feels safe and secure with mum and whom she has named Jane. Mum treats 'Jane' as part of the family and welcoming when she arrives. At times she wil get angry ans verbally aggressive with her as she does with me.

J. Basic Comforts > Diet and nutrition • 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).