General Information

The articles below are taken from the regular newsletters. The idea to consolidate them into a single page was in order to assist those people new to the group in  navigating their way through the material in a more logical and condensed fashion.

Contents

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

Post-Apocalypse

Make sure there is a will. If you have to get probate, this document becomes public property. Keep it as simple as possible. Make sure it is somewhere safe - preferably with someone not emotionally involved.

Get to know a friendly funeral director before you need him. Ask at the hospital, the church, the crematorium. The right person can help.

Think about  a post-mortem, if appropriate. You can sign the relevant papers some time in advance, if they are ready and everyone knows about them. If you don't want one (you may not have a choice!) be sure everyone knows.

If the deceased had a pension, tell the pension provider as soon as possible. Any overpaid pension will be reclaimed. You don't have to do this yourself - rope in a friend or colleague. Most pension companies keep paying for a few months after death. Does yours? Can you raise funds if not?

Similarly, you must tell the bank/building society. Any account in the sole name of the deceased will be frozen until things are sorted out - do you have alternative arrangements?

The death has to be registered, and this has to be done by a relative. The hospital/doctor will provide a death notification - make an appointment with the Registrar, and take this along. Take a friend as well. Get extra copies of the death certificate - one for each pension or insurance company involved, and at least one extra. This may be the first time you hear the horrible word widow(er).

Transfer as much property as possible out of the name of the person with dementia. All their property has to be declared for probate. If there is a house or savings, you need an up-to-date valuation. Do you really want to see an estate agent/financial advisor immediately after the funeral?

Get insurance policies assigned out of the estate if possible.  Probate costs more the bigger the estate, so does inheritance tax (though between husband and wife none is payable).  The value of the estate also becomes public knowledge at probate.

If inheritance tax is payable, it  must be paid before the property is released. Be prepared to borrow money if necessary.

Accept all offers of help, especially  with everyday matters. If someone else will cook dinner, look after the children, drive you around, make sandwiches for after the funeral or whatever, let them. It will make them feel useful, and it will lighten your load.

Hope this isn't too depressing. I'm told life will improve eventually, and I am slogging on in hope.

Helen Beaumont 

Looking Good

The booklets are now available from Carol Jennings and we would be grateful if carers could send an A5 envelope (same size used for the PDSG newsletter) with a 39p stamp.  The booklets contains material taken from earlier newsletters.  We are sending them to new members and hope that they find them useful.  We charge £1 per copy when more than one booklet is requested. We are very grateful to the British Lions in Leicester who sponsored this and to Peter Davis at Phoenix Photo Litho plc also in Leicester who produced and printed the booklet at cost price.

Penelope Roques

Obtaining a Diagnosis

I personally think that a clear diagnosis helps, and I would go wherever necessary to get one that you feel comfortable with. Dealing with the disease and the patient is easier if you understand what behaviours are "normal" and what to expect.

Good luck!

Niki Philcox

Sex, Sex & No Sex

A good description of Pick’s/FLD is that the wiring in the front part of the brain has gone haywire. Sometimes there is no message getting through at all and sometimes messages are bombarding and cannot be switched off. When this happens more rational signals of caution seem to fail.

In some cases a sufferer of Pick’s/FLD will have loss of libido and show no interest in sex or consideration for the partner’s feelings. This may lead to suddenly having separate bedrooms and leaving the partner feeling shut out and isolated. Suggestions from the partner that they too have needs are totally ignored and there is no room for negotiation. After a long and close partnership this can be very hurtful.

Sometimes when rejection happens later in the illness we may wonder if perhaps the sufferer fails to recognise the face of the partner who after all, in their mind, is not this fifty plus person but is only 24 and very good looking!

The carer may also be so tired by their role of caring that they may not want any intimacies and in any case their feelings for their partner may have changed. Often a carer feels that the person they are caring for is not the person they married and their feelings have altered. They still love the person for whom they are caring but not in a sexual way.

We often describe a sufferer of Pick’s/FLD as being selfish and childish and appearing not to consider other people’s views. This can also be apparent in a sexual relationship. Failure to consider the partner’s needs is often mentioned. Encouraging the partner and explaining needs can work in some instances, but by no means in all cases.

Sometimes in cases of Pick’s/FLD we hear of changes in personality, particularly with patients becoming disinhibited. This may start with crude jokes told at inappropriate times and inappropriate comments. Such patients may also show increased interest in mildly perverted magazines for example. Disinhibition may also occur in the physical sense such as touching a partner inappropriately, which may cause great distress, particularly added to all the other stresses caused by Pick’s/FLD.

Pick’s/FLD causes immense sadness and the loss of small intimacies such as holding hands or the little pat on the shoulder can add to the sense of isolation and loneliness that these illnesses bring. Obtaining a diagnosis may provide some comfort. It is often only with hindsight that a carer can see when the onset of the illness and the symptoms occurred and can understand that although it was no help when they felt rejected and hurt, the changes in behaviour were in fact part of the illness.

Penelope Roques

Looking Ahead: viewpoint from Philadelphia

Picking up on one of our latest postings, I would like to remind family members that now is the time to make the inevitable mortuary arrangements, whether or not you are planning to have an autopsy. As was pointed out, no matter how long we have been living with the inevitable decline, when death does come it is still hard for all of us to accept. If the mechanics are in place, it will be just that much easier.

Another thing I would suggest was brought to my attention by one of the speakers at the Pick's support group: long term insurance. This is not for the afflicted person, but for yourself and other members of your family for whom it might be appropriate. The earlier you make your plans in this regard, the better, as the rates are very low before the age of 49 or so. You don't want your family to have to go through this financial burden again, I'm sure.

I'm not a salesman or representing any company, but it made sense to me when it was suggested to me, and as I have spent the last few months getting our finances in order (this was always handled very well by my husband, now in a nursing home) it was right for me to include my own long-term plans along with the rest.

There is nothing we can do to arrest the progress of this disease, but it sometimes helps to have something practical to turn one's attention to. I hope this helps.

Love to you all.

Tess

Spend, Spend, Spend

Judgement, which is a role of the frontal lobe, is often seriously impaired in our diseases. Calculation and the ability to understand complex finances is often retained until quite late in the illness. It is the mixture of the two which often causes problems.

Loyalty, respect and maintaining the independence of the sufferer often conflict with the needs of carers to exert some financial control. Taking away the sufferer’s rights to his/her money is an enormous decision to have to make and often causes friction in the extended family as more distant family members cannot understand the extent of the problems. Always the first and most important step to be taken is setting up the Enduring Power of Attorney. However not all sufferers will agree and even such explanations as " it is the modern way of doing things and we should both take out the Enduring Power of Attorney in each others names", or the suggestion that the sufferer is a patient at a hospital and is therefore more vulnerable does not always work. There may also be the problem of understanding the wording as this may be impaired in Pick’s disease.

The sufferer having a diagnosis of Pick’s disease of FLD is sometimes a help. Sometimes it is possible for the carer to visit the bank manager and explain the problems without the sufferer’s knowledge, sometimes an arrangement can be made. Limiting the amount of cash, removing cards, limiting the amount in an account are strategies which may work. Sometimes talking to business colleagues of the person with dementia is possible to prevent redundancy money being handed over in a lump sum or preventing encouragement to set up a new business. Often these plans do not work and the sufferer will simply visit another town and open up yet another account. Getting cheques cashed at the golf club or pub is another habit many sufferers have.

Often there is the future of young children to be taken into consideration and maintaining their way of life, schooling and social needs is another factor to be taken into consideration.

Limiting temptations is extremely difficult. Sometimes it is possible to modify behaviour and temptations by ensuring the sufferer does not pass through the really tempting part of town (I modify my own behaviour this way) but that only works in some cases. Sufferers are often at the mercy of telephone salespersons, magazine articles and junk mail. Restricting access to these is extremely difficult.

As the illness progresses sufferers may become more amenable to control measures being in place but it often takes a long time for this to happen. If all else fails it may become necessary to go to the Court of Protection to get access and institute some control. This is a mechanism which looks at finances from all parties points of view but is often expensive to implement.

Penelope Roques

Eating

Some of the earliest changes noted by our carers was the way some sufferers ate. Instead of putting a modest amount of food on their plate they would help themselves to as much as they could get onto the plate. Another habit noted was that often they would eat very quickly putting large amounts into their mouths at a time. This would be followed by a quest for seconds even if other people had not yet been served. These habits showed a loss of the normal social discriminations that we usually make all the time. A change in amounts of alcohol taken was mentioned. Several carers mentioned that what a sufferer could see s/he would drink and that this especially would be awkward at functions such as AGMs or church meetings when glasses of wine may be put out for people to help themselves. Sufferers also tended to serve themselves at dinner parties without checking if other people needed serving or whether there was enough for everyone. The only solution seemed to be to keep the bottle down the other end of the table. I feel that many of these habits can be put down to utilisation behaviour: what you see you use. This is seen a great deal in FLD and Pick’s disease.

Another change that was noted was a change in actual foods enjoyed. Sweets and puddings would be popular and more sophisticated foods enjoyed before would be rejected. Often sufferers would eat large amounts of sweets and so put on weight.

Some more extreme problems seen in FLD and Pick’s is a desire for certain foods eaten from a particular plate. Ray has eaten fish and chips now for about eighteen months - every day, not from a shop either. This is made worse by the fact that his wife hates fish and chips. Routines particularly affecting the times of meals were mentioned. Dinner must be taken at 6.50pm regardless. Also we often hear of sufferers having eaten their dinner at friends would suddenly decide that it was time to leave and nothing would change their minds. A desire to leave as soon as the destination is reached is often seen in FLD/Pick’s.

I suffer from all of the above problems but I hope in moderation. It is only when there is change in previous habits, tastes and problems with social behaviour that carers need to be aware and to try and manipulate the management of these problems.

Penelope Roques.

Telling the Children

Surely there can be no greater grief for a child than 'losing' a parent's personality and no greater fear than that experienced when the loss is due to dementia.

For children this 'living bereavement' introduces them to one of the greatest losses possible at an early stage in their emotional and intellectual development.

We all want to spare our children pain but mustn't underestimate their ability to perceive changes in the adult upon whom they were always dependent.

Of course responses to this situation will vary with age. We do know that to have suffered such an important loss at a young age can lead to long-term problems that may be carried into adult life.

So how can we help?

It is important that we:

1) Are aware that children are 'barometers of feelings' and like us will be feeling anger, guilt, fear and frustration.

2) Explain things very honestly but in a way that children can understand

3) Try to remove the fear and insecurity that can lead to behaviour problems. For example dementia can not be caught and the other parent is still always there for them. Schools need to be informed that there are changes in family circumstances.

4) Involve children. They can adapt to many changing circumstances. Older children are often embarrassed by their parents anyway! This is compounded when a parent displays 'strange' behaviour. They may share their feelings with those outside the family but being involved in decisions is of great importance to them.

Dealing with loss is never easy but ignorance is NOT bliss.

Carol Jennings

Enduring Power of Attorney

Comment: Setting up the Enduring Power of Attorney is particularly relevant in cases of our group of illnesses. Information on LawNet, solicitors specialising in helping clients with dementia and supported by Help the Aged can be obtained from CANDID, Help the Aged and the Alzheimer's Disease Society.

Coming to a decision on brain tissue donation

However, I have out more about the procedure and I now know the real facts about the autopsy. The body is left at peace until it is moved to the undertakers. Then for one day it is removed to a hospital for a small incision to be made at the back of the head to remove the brain tissue. There is no visible alteration to the face.

Having moved from the unknown with all the accompanying fears, I can now face the future and future generations in the knowledge that this now fairly painless procedure is in the hands of the nursing home. Hopefully, my husband and I will have helped further knowledge about Pick's disease.

Lucy Cozins

Share Your Experiences

If you would like to write about your experiences related to communication in caring for someone suffering from Pick's Disease, please send your final copy to either Carol or Penelope.

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