Dad and I attended the Alzheimer Society workshop, called Living with Alzheimer Disease, on September 24 and Saturday October 1. It was scheduled for 10 hours over the two days, divided into 6 presentations or workshops. Dad and I went to all three sessions the first day and one session the second day. I had coffee with him and discussed the workshops. We got package of printed material which included printed versions of the Powerpoint slides that some of the presenters used, and some other literature. I picked up other fact sheets, booklets and pamphlets. In the presentation and literature the person with the illness is generally identified as the person or individual, and sometimes as the patient. For social services, the person with the illness is the client.
The first presentation was a medical presentation by Dr. Strang. He covered the medical basics of Alzheimer and other dementias. He mentioned mental illnesses – eg depression – and other medical conditions that can affect perception and thinking. Sometimes there is a overlapping problem. He discussed the process of identifying Alzheimer Disease, as opposed to other problems. As a matter of interest, the medical literature in Canada describes the illness as Alzheimer Disease, while the common usage in the US is Alzheimer’s Disease.
The second presentation was by Norma Kirkby who works for the AS. It was called Valuing the Person and it was devoted to suggestions about doing positive things with the person. Her suggestions would appear to me to be appropriate to many individuals at different stages of the illness. The main theme was doing things the person likes and can still do – even with some cheating. She mentioned that it should be what the person was familiar with, within her limits and boundaries. She cautioned against talking down to the person, and warned that you can’t argue with a lot of unreasonable behavior or change the person by arguing, lecturing, counseling. Caregivers are better off to not argue, get out of the way, change the subject. She was a little fluffy, into the pop psychology stuff but that seems to be what helps many caregivers to get through this.
Third presentation was by Mary Ann Haddad who also works for AS. She emphasized that a caregiver is vulnerable to burn-out and depression. She said that caring for an Alzheimer individual mainly means letting the person feel calm and in control, keeping daily life meaningful and enjoyable. The caregiver has to be realistic about the person, what he can do, his own health and abilities. There was a caregiver bill of rights in her printed material which warns the caregiver to take care of himself, not to be manipulated by the person through guilt or anger.
The fourth presentation (on the second day) was by Priscilla Vincent, a case manager in the Provincial Home Care program, which is administered in Winnipeg through the Wpg Regional Health Authority (WHRA). She covered what the Home Care does, and other community programs, day hospital programs, special assessment and care teams. Most services are free. If a caregiver wants to have the patient in a nursing home for a short time so he can get a break there is a fee for that. There is no fee for Home Care to have a worker in the home to take care of the person while the caregiver goes out – during regular daytime hours. She covered the Home Care assessment process and the paneling process for admission to a nursing home with government financial support. There is no access to nursing home care without an assessment by Home Care or an assessment in a hospital. A patient is not paneled until she actually needs nursing home care as assessed by Home Care – and then there is a waiting list depending on the home chosen. Her material included fact sheets: WHRA Home Care Fact sheet, WHRA Respite Care Fact sheet (nursing home respite), Meal Programs, Community Resource Programs.
I asked Ms. Vincent what happens if the person is abusive or violent. She said they try to work out problems, they involved the psycho-geriatric assessment team. But they withdraw service if the patient makes the workers feel unsafe.
I skipped the presentation about Legal and Financial issues and “The Family Perspective”. Dad had started to complain about one woman who asked a lot of questions and made a rude remark. There didn’t seem to be too much more to learn there, so I took him home and talked to him about some issues.
I got several books, pamphlets and fact sheets:
A book called A Caregivers Guide published by the AS. It’s about 100 page long, with information about the progress of the disease, the needs of patients, the demands and stresses on families.
A booklet published by Canada Mortgage and Housing called At Home with Alzheimer’s Disease with some suggestions and some information about behaviors and problems that come with the disease.
A Manitoba Health Booklet called A Guide for the Caregiver. Doesn’t add to the other books, but it is short, in point form. It has some phone numbers for services.
The Manitoba Senior’s Guide. There isn’t much about the disease as such but some phone numbers for programs that might help.
Alzheimer society pamphlets: Programs and Services, current Newsletter, Reducing Caregiver Stress, Are you providing Alzheimer Care – 10 Signs of Caregiver Stress.
AS Fact sheets: Education and Support Meetings, Home Activity Partnership Program, Community Resources, Getting the Most from a Visit to your doctor, Anger/Frustration and Dementia.
Forms for the Safely Home program – the Alzheimer Wandering Registry.
Fact sheets on Donezepil/Aricept, which is the medication Mom takes now.
Through the presentations and the material, I confirmed what I thought I knew about the illness, and I learned new things.
Alzheimer Disease is progressive. It causes loss of brain function, and leads to many behaviors. No one seems to get the symptoms at the same rate. There are general stages, but nothing is clear. It is untreatable and eventually fatal. There are no effective medical treatments. There are some pharmacological treatments (drugs) that seem to hold it up or delay the disease for a few months. Care for Alzheimer Disease consists of making the individual feel good and valued as long as possible and making sure she doesn’t harm herself or others.
In early stages there is forgetfulness of recent events and denial of forgetfulness. Short attention span. Social withdrawal. Confusion about time and place. Not following through with established patterns in work or tasks of daily living. Poor judgment. Decreased interest in reading. Sporadic loss of ability to do familiar but complex activities – such as writing a cheque. In the middle stages, there obvious memory loss and confusion about place and date. Difficulty functioning in social situations. Loss of ambition – lots of sitting and staring. Paranoia, suspicion, insults, restlessness. That’s where we are now.
There are other middle stage symptoms to expect. Not recognizing people, confusion in basic tasks like dressing. Perception problems – doesn’t see where things are, reaching over them. There are problems of recognizing what things are and what they are for, and there are problems recognizing words. More severe problems carrying out regular tasks. The books discuss the more severe, late stage symptoms.
The family physician doesn’t have a large role in Alzheimer care. The doctor can make the diagnosis and prescribe medication for the illness. What the doctor can do is limited by the disease – which is basically not curable or treatable. The doctor can try out different medication and dosages but that is a limited treatment. A doctor can treat other health conditions, and monitor general health.
The family has a right to present information to a doctor. A doctor should treat medical information as private unless the patient agrees. If the patient authorizes family involvement, the doctor should share information with family. Whether the doctor listens to the family, shares information, depends on the doctor’s patience, judgment and style. The doctor has almost no time, within a regular office visit, to see the family and listen to lots of information. It can be unwelcome for the doctor – no time, not getting paid, and it will seem to the doctor all he is doing is hand-holding. Sometimes the caregiver or the family are intimidated by the doctor or the patient and don’t present all the information to the doctor. The AS suggest the caregiver write a list of symptoms and concerns and make sure the doctor gets it if there is a problem with talking to the doctor. They also favour getting involved with Home Care which can order assessments from other professionals and visit the home to see what’s going on.
Care for the patient and control of the patient’s behaviour is handled by the caregiver, the family, and the provincial Home Care program This usually means, as it does for my parents, one old person looking after another in the home, with aides from Home Care coming in to assist part time with a range of tasks. The primary responsibility for managing erratic behaviour rests on the caregiver. It is onerous, stressful and depressing.
The AS Caregiver’s Guide – has 3 chapters on Meaningful Activities, Communication, and Understanding Specific Behaviours with some suggestions on managing an Alzheimer patient. The suggestions for activities are, first of all, that she should have them. They don’t have to be fancy. They should be based on what she did, what she enjoyed, what she was good at. Visits and outings are meaningful activities. The presentations and materials emphasize communication strategies such as using strong suggestions to keep her on track, but no direct orders. Don’t give her options. Don’t argue, change the subject to something happy and familiar. “Yes of course Mom, but we should get the canned corn while we are here and worry about the horsemeat, bananas and mayonnaise later” “Yes I like angel food cake but I forgot to tell you I am on a diet this week.” If she gets confused – watch for it, get her back into the groove.
The AS Caregiver Guide covers several of the more risky and distressing behaviors – restlessness, paranoia, wandering – in Chapter 7, Understanding specific behaviors. The book implies strongly that the caregiver has to understand that the individual’s behaviour is not personal, and to act on that basis. The main suggestions are to make sure the individual gets exercise, and is occupied with activities that engage her interests, to keep things simple, safe and predictable, to follow a routine.
The book suggests a patient should get, less caffeine especially before bedtime. It suggests more exercise, less daytime naps, trying to get the patient tired in a healthy way so she sleeps through the night. Some patients get distressed at darkness. The book suggests closing the curtains and turning on lights when it gets dark outside, using night lights. One of the main techniques in dealing with erratic and restless behaviour is distraction. Arguing or sulking when the person acts out escalates the tension, and just wears out the caregiver.