(2150 words)
Edwin died in a nursing home several months ago. He was 53 years old and although the cause of death was Pneumonia he had been suffering from Alzheimer's Disease for about four years. A tree in the garden of the group home where he lived for the last three years of his life has a plaque commemorating him.
Edwin had spent most of his life in a large institution where he worked in a catering business that was part of the supported employment service. At his own request, which was supported by his mother, Edwin was included amongst a small group of residents who moved out of the institution three years ago. The decision to move was first made six years ago, at which time Edwin's health was not a major problem. He had always had gastric reflux and asthma, but these were well controlled. When he was about 45 he developed rheumatoid arthritis that particularly affected his hands, making it hard to grip the knife when he cut vegetables.
Both Edwin and his mother were very excited about the move and were kept informed during the long process of purchasing land and building houses. Whilst the building was in progress staff noticed that Edwin was becoming forgetful and losing some of his independent living skills; for example, forgetting to shower or what particular kitchen implements were for. He also began to lose interest in his work, which enjoyed in the past. Initially staff thought he was depressed because the move was taking so long.
It took over twelve months and several visits to a neurologist for a diagnosis of Alzheimer's disease to be reached, by which time Edwin had moved to the community house with the others and continued to attend his place of work. However it took him much longer to adjust to the new house than the other residents and he had difficulty in remembering where to put things away in the kitchen and where his room was. he sometimes became quite confused about where he was , which made him upset.
He continued to lose his skills and all interest in going to work. Eventually it was decided that he should give up work and remain at home. By this time Edwin had been in the house for two years and he was an important member of the household. The staff as a group made a decision to try and support him at home for as long as possible, despite suggestions from the regional disability services team that he should be moved into a nursing home. Edwin's mother supported the decision to keep him at home. In her view he was extremely well looked after, although as he needed more and more help she felt the staff could have used additional equipment such as hoists to help with the heavy lifting.
Staff spent time explaining to the other residents what was happening with Edwin and they seemed to accept that some routines needed to change to accommodate his needs. Staff roster were re-organised to ensure a staff member was always available to support Edwin. He stayed at home until four weeks before his death, when he contracted a severe chest infection and the GP advised that he require hospital care. Staff organised an unofficial roster with his mother to ensure one of them was with him at all times and the other residents had a chance to visit him in the hospital. Edwin died during the night while his mother and house supervisor were there. All the house staff and residents attended the funeral and a counselling service was contacted to work with both the residents and staff about issues of loss and grief.
Three months after his death, Edwin is still regarded as a valued member of the household. Pictures of him are still on the noticeboard with other residents and he is often talked about. No one has taken his place, although a new resident is currently being selected by the regional disability team.
1) What arguments can be made for and against Edwin moving the over to the community at the time that he did?
For
Edwin had requested that he move to the group home. He was excited about it and he had been involved in the planning, purchasing, design and building of the new house. It would be unfair to Edwin if this opportunity was removed after living almost his whole life in an institution. Especially as the staff already felt he was depressed over the length of time the process had taken.
Edwin's forgetfulness could easily be caused by depression, his age of under 50 does not make him a likely candidate for Dementia and the much wished for new home was taking a long time.
The Rheumatoid Arthritis that Edwin experienced would mean that he needed more individual attention and time to accomplish manual tasks, this would be best managed by the support staff in a group home rather than a large institution.
Edwin could have a personalised environment in a group home, he could choose his decor and his furniture that suited his tastes. The opportunity to have personal belongings (other than his clothing, toiletries and small decor items) and express his personality has probably never been available to Edwin before. A large institution would not be flexible with decor, there would be very little room for personal belongings.
Edwin was moving with a group of people he knew from the institution. It is good for people to move as a group, it smooths the transition stages when familiar faces move together.
If Alzheimer's disease was suspected and argument for the move could be made based on the group home being more able to be flexible in adapting Edwin's environment and support needs as the disease progressed.
Against
Edwin worked at the institution where he resided so it makes sense that he would continue to live there. If he moved out he would just have to travel back to attend work every day.
Edwin already had signs of ageing (the Rheumatoid Arthritis), it is possible because of these ageing symptoms that he would not be able to integrate as fully into community life as someone who is younger.
Edwin was showing signs of forgetfulness in everyday situations, such as which kitchen utensils he needed to use. He should have had a diagnosis before he moved as these are very common symptoms of the onset of Dementia.
Routine disruption would be a very difficult thing for Edwin to deal with at the time of the move. People with Alzheimer's disease rely heavily on routine in their daily life to cope.
2) What adaptations could/did the CRU make to allow for the predicted changes in Edwin's needs as his disease progressed?
Alzheimer's disease is the most common form of Dementia, it is a progressive degenerative disease which attacks the brain and eventually leads to death. It affects 1 in 25 people over 60 years of age. Predicting the effect on a person can be difficult because the disease progresses individually and in varying time frames in different people.
Predicted changes in Edwin's needs:
Early Dementia
Forgetfulness, blaming others for stealing things, repeat himself or lose the thread of conversation,
Moderate Dementia
Confused and forgotten memories (short and long term), see and hear things that are not there, wandering at night, irritability and aggression from frustration.
Advanced Dementia
Unable to hold short term memories (forgetting he had just eaten a meal), lose ability to talk or understand language, be incontinent, need help eating drinking washing bathing toileting and dressing, disturbed at night, aggressive when confined or feeling threatened, personality changes, difficulty walking, uncontrolled movements, becoming bed ridden, requiring full time care.
Adaptations to the CRU
Early Dementia
Changes around the CRU that would need to be made at this stage to support Edwin would mostly be in staff. Staff should be offered some training about Alzheimer's so that they can be prepared to support Edwin as the disease progresses. There may need to be additional staff rostered at the CRU so that Edwin can choose to stay home on weekends if he wants to instead of going on outings with the rest of the residents. Staff will need to be very careful about responding to Edwin in a consistent and supportive way. There are no instances of these interventions noted in the case study.
Collect memories of Edwin and the residents together. I suggest that it is important to get lots of photos, and any or all of these suggestions and more; get lots of quotes and write stories, go on outings, make concrete imprints of every ones footprints or hand prints, have a group portrait taken or drawn, do a silly one and get dressed up and get a serious one, go on a group holiday or to a special event like a concert or the football.
Moderate Dementia
In this stage of Dementia Edwin would have needed some physical interventions at the CRU. He would be likely to require an alarm pad at his doorway so that sleepover staff are alerted whenever he is awake and walking around at night. Motion alarms on the doors would need to be used during the daytime to alert staff to his departures from the house. There is no record of this happening in the case study. Staff would need to keep detailed case notes because Edwin could be likely to remember something that had not happened at all, the consequences of remembering things that had not occurred could endanger careers or his health. Another intervention that is not related in the case study is additional memory support for Edwin. He would need notes and pictures to remind him of everyday tasks and places to put things so he doesn't lose them. Also support for Edwin's reminiscence could be required, a Life Story Book, complied by staff or Edwin with assistance to help him keep a connection to his past and help support workers gain greater insight into his life. Additionally taking pictures of Edwin at the health care services he uses and compiling them into a photo based social story can help Edwin remember the doctor he goes to visit and the hospital that does his tests which would reduce his stress when he needs to attend.
Advanced Dementia
Staff rosters in the CRU would have to be expanded to include 1:1 care for Edwin as the Alzheimer's Disease progresses, this was done in the CRU as he was able to stay home up until 4 weeks before his death. He would have needed full assistance with; all personal care tasks, continence aids, manual handling and transfer assistance, behaviour management and support, a wheelchair and a disability support worker on a full time basis. The CRU needed to have hoists installed in the bedroom and bathroom so that Edwin could have full access to all facilities. This was not done and it is a dangerous situation for both Edwin and staff. Edwin may have also needed an active night staff member due to the sleep disturbances and his final decline towards his total infirmity. There is no record of this intervention in the case study
3) What additional supports and services might the CRU have used to support Edwin as he "aged in place"?
Additional supports to ageing in place
Have the national Dementia helpline phone number available for staff to access if they have questions or when experiencing difficulty or for when they need extra support.
Planning ahead for financial and medical decisions through Alzheimer's Australia. Edwin might need to have an administrator and a guardian appointed. His mother may not be able to act in this capacity due to her emotional involvement or her own ageing issues.
Counselling services are available through Alzheimer's Australia for people experiencing dementia, their carers and family. This could be useful for staff and the other residents.
Community Aged Care Packages provide individualised packages of care services to help people stay at home. This package could fit the CRU with grab rails and ramps required to help Edwin stay mobile and independent as long as possible, I would expect these are already in place.
Additional services for ageing in place
Access Alzheimer's Australia for information, education and training for staff.
Rent a Safe2Walk GPS locator's and mobile phone from Safe2Walk.com.au for a low cost. This would have allowed Edwin freedom to move about in his familiar surroundings with a reduced risk of becoming lost. Edwin would have experienced a reduction in the buildup of anger and frustration as a consequence of the freedom to move about.
A good family doctor or GP who is available to make home visits. This GP will be the main person providing ongoing care for Edwin. The family doctor will usually be the first person to make a diagnosis before referring onto a specialist.
CDAMS (Cognitive Dementia and Memory Services) provide expert assessment of Edwin's cognitive function, he would be referred by the family doctor to this service.
Other health professionals such as a Physiotherapist, Podiatrist, Speech Therapist and Occupational Therapist could all be used to help Edwin "age in place".
4) What strategies may have been used by the counselling service to help the other residents deal with their grief?
People who experience Intellectual disabilities experience grief and loss just like everyone else. People with intellectual disabilities are much more likely to have neglected emotional lives than people without intellectual disabilities. They are much more likely to have been sheltered from events of loss and protected from the harsh realities of death due to a benevolent idea that it will be better for them. Fear that the person will react negatively to the news will prevent the person being informed by their family of a death. These possibilities are likely to cause the person to be suddenly shocked when they eventually do find out, only to grieve at a later time and therefore out of step with the family or community, and essentially in isolation.
Strategies used by the counselling service would likely include:
Preparation for Edwin's death. The counselling service may have been contacted before Edwin died, effectively ensuring that they could educate about and prepare the residents for his death. This process would mean that the residents would have time to get used to Edwin dying.
Strategies that maintain memories and preserve important relationships in a tangible form like
life story work, memory books and photographs which are accessible to the residents at the CRU provide concrete aids to a healthy grieving period. These are a very good strategies that may have been used by the counselling service. Use the material that was gathered when Edwin was still well to create memory keepers.
Telling the truth about what happened to Edwin to the other residents. Social stories could be used to explain about death. Explaining that because he died we won't see him anymore. The residents would be educated about the a funeral for Edwin, possibly using photographs of caskets and mourners. The counsellor would explain that he will be dead inside the casket and he wont be able to talk or ever be alive again and that the funeral is for everyone to come to say goodbye. They would check that the residents understand that Edwin died.
Ask the residents how they would like to say goodbye to Edwin and offer the opportunity to participate in Edwin's death and rituals in a way that enables them to affirm his death and say goodbye in a meaningful way. They could say something at his service, choose music, greet guests, hand out flowers or say something at the graveside to name a few.
Offer them the chance to put something in Edwin's casket, like a photo or a teddy or a drawing, something that means something to them both, but not something precious that they would be sad about if they never saw it again.
Being open to communication and listening is a skill that is never out of place in this situation. Grief can be expressed in many forms. When any of the residents communicates extreme anger or seems to be profoundly affected by Edwin's death, or if they are unable to express their grief in their social network, or they are not coping with their bereavement they will need ongoing services. The counselling service will be listening and watching for signs that any of the residents are not coping healthily with their grief.
Additionally:
Staff at the CRU should inform all the residents families and day service providers and their support networks about Edwin's death and inform them of the impact on the other residents so that they don't have to keep explaining why they are feeling sad.
Staff could use Edwin's clothes to make a quilt for the residents to share so they can feel close to him when they are missing him.
Information sourced from:
Workbook: Support Older People with a Disability CHCDIS13A, copyright Chisholm Institute 2010, Hosken & Gray
http://www.fightdementia.org.au/understanding-dementia/section-1-about-dementia.aspx
http://203.89.197.244/services/services--support-we-provide.aspx
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Alzheimer's_disease_explained?open
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Dementia_support_services_are_available
http://www.safe2walk.com.au/content/view/128/151/
http://constellationproject.org.au/intellectual-disability-and-grief.php
http://www.bereavementanddisability.org.uk/
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