"Dementia: help to be offered simultaneously with diagnosis"

My husband's memory began to deteriorate in 2003. At first we thought it may be due to the death of our son in a road accident. Our doctor sent him to the Memory clinic in our town. For over a year he was subjected to a barrage of psycological tests as well as a brain scan but nothing positive was done to help him. When a Psychologist warned my husband that it was possible he may lose his driving licence, my husband decided enough was enough and did not go again. Is frightening a patient the best way forward?

In 2008 my husband had bladder cancer and his memory became even worse. His muscles wasted too. Although he was successfully treated for this cancer he still tried to get our doctor to refer him back to the Memory clinic. However we were told that things had changed and it was not possible to do this. After complaining of muscle wastage frequently, a trainee doctor eventually referred him to a neurologist who stated that my husband had Parkinsonism.

After trying the strongest medication (which he could not tolerate), he was then put on the weakest medication. This did not have the desired effect either... Nothing happened. Finally I wrote a letter to that Consultant Neurologist stating that my husbands symptoms were mainly cognitive. My husband saw the Consultant on average every 6 months but only observations were made and no advice or other medication etc. were offered.

In April this year (2012) I took my husband to see our doctor again as his memory had deteriorated and he had become incontinent. I was severely distressed as no help or advice had been given in spite of all the media advice that it was so important to diagnose and treat this sort of problem early. No one seemed to be taking any notice.

The young doctor at our practice immediately made an appointment for my husband to attend the memory clinic and also offered me help.

My husband was seen the next day by a very efficient doctor at the Memory clinic who set in motion psychological tests and another brain scan. I think the original notes from 2003/4 were not found. A short time afterwards my husband was diagnosed with dementia and given Donepezil 5 mg. a month later this medication was increased to 10 mg.

Unfortunately no advice was offered at this time so we were left to try and resolve our conflict of emotions and waffle our way forward. Some time later I did hear of a group in town who ran meetings for Dementia patients and their carers. This was so useful for us although I have still such a lot to learn. Without this group, I would still be groping in the dark although recently I have received an invitation to attend 4 classes to discover more about all aspects of Dementia.

My husband is responding well to the medication. Some days his memory is dramatically improved and it certainly hasn't deteriorated, his incontinence has also improved. I only wish our doctor had sent him to this Memory Clinic for the medication before his memory had become so bad. Also my own health would not have deteriorated to such an extent. I felt (and still feel) totally exhausted from the trauma of trying to get the best medical help for my husband. Perhaps then we may not have gone through so much pain and exhaustion.

There is just not enough information for the newly diagnosed Dementia patient and their careers. It is totally pot luck if you receive help or guidance in the early days of diagnosis, if your own doctor doesn't refer you for treatment you have no chance of help. Dementia patients need early diagnosis and treatment. This is vital for them, their carer' and their families.

WHAT WAS GOOD?

Once my husband was sent to the Memory Clinic the tests were rapidly done and the result was that my husband was quickly given the appropriate medication.

I am delighted with the way my husband was treated as a normal individual and not as someone with no feelings or choice. The doctor asked really pertinent questions and listened Attentively to the answers. He seemed to quickly take everything ‘on board' and acted swiftly and efficiently from then onwards. He kept us informed by letter at each stage. I am also so pleased at the efficacy of the medication. I only wish all this could have occurred a few years previously. So far the Dementia seems to remain at the same stage and little or no deterioration has been observed.

HOW DID IT MAKE YOU FEEL?

My husband felt so frustrated and upset for all the years when no one listened to him or apparently did not attempt to help him. Imagine his feelings when he realised his intelligence was slipping away from him and he could no longer do most of the things he used to do. He had to see his wife take over the driving, the accounts, the day to day management of their lives. If he hadn't had such a strong personality I could imagine there could have been extreme problems with frustration and anger.

When the diagnosis was finally given, I don't think he could actually comprehend it. Unfortunately although he was allowed to ask questions, he could not think of any at the time. He was not given any advice either.

I (wife and carer) was present at the time. Although I was pleased with the way my husband was treated, I think more could have been offered immediately to offset (my) dismay and ignorance of what to do next.

WHAT SHOULD CHANGE?

I would really like doctors to trust what their patients say more often and take notice of this.

I think that Dementia, although perhaps not curable, can definitely be slowed down so it is VITAL to get an early diagnosis and medication. This is not sufficient in itself though. It is no use giving a diagnosis and medication and then leaving the patient and carer in limbo. They need instantly to know that there are people out there to help them. Even if it is only a few sheets of paper giving names and telephone numbers of people who can help. I realise now that there are lots of caring people and groups but the days before I gradually found this information were like living on the edge of a precipice or a huge, frightening black hole.

In these days of instant communication it should be possible for suitable information and help to be offered simultaneously with diagnosis.