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…………..it was a challenging trip, made all the more stressful, for his companion at least, by his absentmindedness “he lost his luggage, his watch, his rail ticket, my rail ticket”, she recalled,….unable to write or read or express himself coherently the most he could do now was listen to music on the radio and go for walks….at home at La Belvedere he would spend long hours looking out the window. On being asked what he was doing he simply replied, “I’m waiting”.(1) 

The above is a description of a patient with Pick’s disease. The events occurred in 1932 and describe the last years of the life of the French composer Maurice Ravel. In the intervening 70 years our knowledge of the illness has expanded greatly, especially regarding the molecular pathology and the clinical or brain scan changes needed to make a diagnosis.

One vastly neglected area of research is the effect that caring for a patient with Pick’s disease has on their spouse and the rest of the family. In this respect we are far behind the research of carer burden and stress in Alzheimer’s disease. Coupled with the younger age of onset and the profound behavioural changes that can occur in Pick’s disease, you will all know only too well how much research in this area is needed.

I have been studying the effects that caring for a person with Pick’s disease has on the rest of the family. Through the cognitive disorders clinic at The National Hospital for Neurology and Neurosurgery, London we have recruited a group of 42 Pick’s disease patients and carers and I have followed their progress over the last two years. The couples and families involved have ploughed through pages of questionnaires, sat through long interviews and came up to London for brain scans. With their help we now have a large collection of data on depression, anxiety, general health, economic implications and the day to day difficulties of being a carer. We have also attempted to measure quality of life and hope to identify the factors that make the caring experience easier.

Carers have described the medical and social services they receive and last year we presented these preliminary results to the UK Faculty of Old Age Psychiatry annual meeting. You will not be surprised to know that we proved that carers and patients were receiving few if any health or Social services; “falling between two stools” of under and over 65 services. Education of fellow professionals is the first step in remedying this and will help local services to lobby for funding.

Over the last few weeks, I have started statistical analysis on all the data collected. Looking at numbers is scientifically useful but cannot convey the perseverance, sense of humour and enthusiasm that patients and carers have given to this research.

In June this year the scientific journal Neurology dedicated a whole issue to research in Picks disease(2). There were specific articles on caring -a great step forward, and one author stated “Although many studies have investigated care giver burden in Alzheimer's disease , there are no published studies of care giver burden in FLD (Pick’s disease)”. I look forward to publishing the results of our current study (of course the PDSG newsletter will be receiving exclusive previews !) and hope that eventually this will improve the overall quality of life for patients and carers. 

References; 1. Maurice Ravel by Gerald Larner, published by Phaidon, London 1996 2. Therapy and management of frontal lobe dementia patients. Irene Litvan. Neurology 56(suppl 4) June 2001 S41-S45

I would like to acknowledge the assistance of The Alzheimer’s Disease Society in funding this research.

David Pritchard

Annual General Meeting - March 6, 2002

For further details and to reserve places (cost £10) – please contact Carol Jennings.

Challenging Behaviour - Can we do better?

A social model of dementia care emphasises that every person affected by a dementing illness undergoes a unique and personal experience as the illness progresses. We sadly sometimes struggle to remember this and dementia services have historically been tainted by their failure to recognise the individuality of each person who presents for treatment or care.

Whilst every person with dementia is different it is possible to see that the illnesses they have, whether it be Alzheimer’s disease or the rarer fronto-temporal conditions, share a commonality of clinical signs and symptoms. For the purposes of this paper it is perhaps sufficient to suggest that every person with dementia will experience, to a greater or lesser extent:

• Changes in their cognitive functions, particularly memory.
• Changes in their ability to function in daily activities.
• Changes in their mood and behaviour.

It is frequently reported that changes in mood or behaviour are the most difficult for carers to understand and distressing to cope with and, in the experience of a fronto-temporal dementia, it is these symptoms which are most evident on a day to day basis. The way in which behavioural changes are described and understood by observers reflects very much the ways in which people with dementia are perceived by those who deliver care and by our society as a whole.

Essentially there are two traditions or cultures. The first is the old culture of care, the so called asylum culture rooted in a model which strives to medicalise behaviour as being a pure consequence of illness. The second is a newly emerging person centred culture which seeks to understand behaviour and its causes in individual people.

The old culture is focussed around a medical model with an emphasis on finding out what it is that has gone wrong with that person and to what extent they have been damaged or disabled. As such it is rooted in the language of decline and deterioration. There is nothing inherently wrong with this in the context of the medical community seeking to better understand the dementia and to develop effective treatment. Where it becomes flawed is when the same approach is adopted by those who deliver care to people. It is the wrong model for this but the historic dominance of the medical profession has led to it significantly influencing nursing care.

The adherence to a model which emphasises deterioration and decline as being inevitable serves only to promote the experience of dementia as a negative and hopeless one. Care workers are advised not to enter this field as they can achieve little and over time the attitude develops that if you are unable to achieve anything then why bother to try.

What emerges directly from this is a tradition of caring for people with dementia in a way which promotes them as being not active participants in care but as vulnerable, dependant, deficient and helpless. The person with dementia becomes regarded at best as infantile or at worst as an object to be kept clean, warm, safe, fed, toileted and put to bed. Dementia care has therefore become a mechanical and physical activity broken down into a series of tasks which form a rigid routine. The emphasis upon the physical relegates all other human needs as secondary or no longer important, perhaps even irrelevant as the “patient” is now inherently different from other human beings.

Within the rigid routines and structures of care which emerge from this culture the manifestation of changes in an individuals mood and behaviour are intolerable. Any such change is regarded as a direct consequence of the dementia and as a problem which not only rests with the patient but which must be managed or controlled usually through medical treatment. The care regime regards the person presenting with a disturbed behaviour as being deviant, often deliberately so, and sadly it becomes easy to see how a punitive response may occur.

Is this the best that we can do?

I believe that we need to pursue a new model of dementia care and one which can promote both positivity and participation. Tom Kitwood suggested that we should attempt to redefine dementia from a new paradigm of personhood. Through this the person with dementia is seen in terms of their whole being, as having a neurological impairment, as well as, not instead of, a unique personality, life history, set of social relationships and varied needs.

This new model promotes person centred care, a philosophy which has certain values and principles, namely:

• Every person with dementia is a unique human being with the same varied needs as any other person.
• The person with dementia is ultimately more important than any label or diagnosis they may have acquired.
• Although dementia is essentially a form of disability, there are always abilities which remain.
• Dementia is a human condition for which we all carry a degree of risk, it does not just happen to other people.
• As far as possible people with dementia should be seen as active participants in care and included in decision making which affects their everyday lives

 A person centred philosophy also has an impact upon the way in which we regard changes in a persons mood and behaviour. The emphasis is upon removing the concept of problem behaviours replacing it instead with that of challenging behaviours. The challenge is to us to try and understand the roots of that behaviour and to regard it as an attempt at communication where other means of communication are either denied or inadequate.

Sean Page
Clinical Nurse Specialist
S. Manchester Memory Clinic
Manchester Mental Health Clinic

Where there's a Will, there's a way

Making a will can be simple and not necessarily difficult, complex or costly. It is important that people being cared for (and indeed carers) put their affairs in order. This can avoid time, trouble and expense when the death of a loved one also creates what is already a stressful situation. Many people think it is not necessary to make a Will because a) they don’t have sufficient money or property, b) they think that their belongings and money will pass automatically to the next of kin. THIS IS NOT ALWAYS THE CASE. The Intestacy Laws are quite complex and can result in property passing to persons for whom it is not intended - creating family discord and, in some cases, a complete break in family relationships. 

One of the most important things to be considered is the appointment of an Executor. This is the person that takes out the Grant of Probate or, in other words, proves the Will and is then responsible for carrying out the wishes expressed therein. This is usually a close family member and where infant beneficiaries are concerned it is advisable to have two Executors who may also have to act in the capacity of Trustees for any such infant until they reach their majority (18 years). Fees can be quite moderate and local solicitors may be able to arrange home visits, including out of office hours.

Remember that any bequest to a registered charity avoids liability to inheritance tax on the estate. Thanks for permission to reproduce this article go to: Michael Bowden, Pumfrey & Lythaby, Solicitors. Tel: 01689 833657.