sunset

Early History

This section starts from my mother's 82nd year. It covers a couple of years before my mother was admitted to hospital. A number of people and agencies became involved during this period to assist my mother to function as normally as possible but it's not like that with Alzheimer's of course. After a while it just becomes a question of what's going to happen next and hope you can manage the fire fighting and contain the situation. The diary the carers kept for me reveals how my mother was coping on a daily basis. Unnecessary use of anti-psychotics by her psychiatrist was a big problem which took forever to sort out. My mother's social worker did a great job though in liaising with the GP, arranging to collect and manage the medication for carers to prompt. Whilst all her support people tried their best on the basis of attempting normality, responses from my mother were increasingly unpredictable.



For a more detailed summary of how it all started

Carers and Support

The support from the local social-care structure depends to some extent on luck and geography. My mother was fortunate in that respect. Local authorities have a vital role in the delivery of dementia care, as most people with the early stages of dementia can be cared for in their own home. Initially she received 3 carer visits a day plus meals-on-wheels at lunchtime but when she took to going to bed after tea, the evening visit was stopped. From the notes made by the carers, see below, it is clear how the Alzheimer's moved up to Stage 5 during 1997/8, the increased confusion, the inability to do simple tasks and the lack of short term memory. Fortunately for us, her Social Care worker kept an eye on things as best she could but the whole thing was very worrying. We had the odd situation where she was pleased to have visitors (anyone welcome it seems), but she refused day care activities with others. She clearly felt safe in her own home but not outside her world. For a long time my mother was adamant she would not go into a home, but in 1998 she did agree to a trial in a Care Home and that was a turning point of the inevitable. Unfortunately, however, events resulted in a hospital admission.


To read the Carer comments in the Day Diary

Friends and Neighbours

After her retirement, my mother was a very active lady, she had a good circle of friends, she was an active Visitor for Social Services and enjoyed having her grandchildren come to stay. As a Visitor, she used to tell us of the lonely elderly folk she used to visit, how much they enjoyed a little company and didn't want her to leave. It's ironic that my mother ended up in the same state herself with the Alzheimer's. We don't really know what visits she had from friends or help from neighbours but from the Carer's notes, nothing much was mentioned. In my attempts to get friends to visit I didn't have any success. It is very difficulty to understand how a person could wander about most of the day with just a couple of short visits from the carers.


For comments on Friends etc.

Predators

A difficult and troubling one. It is fortunate my mother lived in a quiet side street and not a main road given that she was often on the doorstep alone. We do know that Jehova's Witnesses took advantage and she was vulnerable to any passer by. Before I took over her finances, we do know that money went missing.


For comments on Predators

Hospital Admission

Although my mother was not admitted to hospital under ideal conditions, we were relieved in that we thought she would be cared for and looked after well. What we weren't prepared was for her to come out of hospital in a far worse condition than she went in. Talk to anybody caring for a person with dementia, and the conversation will often turn to how poorly many hospital staff seem to understand how dementia impacts on theirs patients. In a hospital ward they don't consider how the limited cognitive capacity of someone with mid-stage or advanced dementia can make a stay in hospital totally bewildering, the 'system' can't cope with that. It is not difficult to see that without a relative there to closely watch over my mother, she went downhill.


To read the report on Hospital Admission

MMSE

All doctors can really do is assess how confused a patient appears to them by briefly checking their powers of attention and concentration through tests of their information-processing and thinking skills. Several standard tests available, but the one most commonly used is the mini mental state examination (MMSE). This consists of a few relatively-straightforward tasks and questions designed to evaluate uncomplicated mental processes, including testing short-term memory and general awareness of current events. It is scored out of 30, and high scores are good. People who are concerned about their memory letting them down, are probably scoring about 25 or 26 out of 30. That's the level of everyday forgetting that we all do, and they just need reassurance that it's not more serious than that. It's only when someone is scoring 22 or 23 they may be referred for more testing.

Anti-Psychotics

In 1986 antipsychotic drugs in dementia care were over-prescribed. As with my mother, many experience potentially serious adverse effects, even with short-term use. This did not help the situation at all.

Confidentiality

Doctors and NHS are encouraged to share the diagnosis and treatment of dementia with carers and family, but it can be done only with the permission of the patient, and that is quite ridiculous when the dementia patient does not understand the request in the first place. The confidentiality that is part of the doctor-patient relationship becomes a barrier to establishing the facts, according to many carers and family, especially where there may be a denial of the problem. This is very frustrating for those who are trying to understand how serious the situation is and how they can best give support.

Hospitals

'The hospital system is not trained to deal with people with dementia. A worrying 42 per cent of all unplanned admissions are people over the age of 80 with dementia, taken into hospital by a crisis. Patients with dementia should be turned around as quickly as possible. They don't like the confusion. People suffering dementia can go completely loopy if taken out of their environment, especially after surgery. Anything that requires an anaesthetic can make the dementia much worse. Hospital staff don't really understand dementia, they should be in secure wards and looked after by fully trained dementia nurses.