Contents

I wrote about Rita in last August’s Newsletter, ending with my fears for the future and now I have to report that this week she was admitted to an E.M.I. home and to my great relief, some of those fears have been proved groundless.

After two weeks of respite care, the first in about twelve years of her Pick’s, I brought her home and together we spent the night sitting on the landing because I could not raise her after she had banged her face on the banister support and could only manage to shuffle about on her bottom. She has put on weight as a combined result of my cooking, her inactivity and the under active thyroid problem diagnosed during the respite care. My own physical condition meant that I could not cope alone.

Two difficult days later she had to be taken to hospital by ambulance with bowel prolapse but was soon able to return home.

Rita had responded cheerfully to the young lady who, on four mornings a week, spent an hour washing and dressing her, but I had frequently to deal with incontinence. At night I had to ensure that she did not wander and fall down the stairs, and the time had come for permanent, professional care.

To my great relief, she went happily into Forest Lodge, the E.M.I home which is less than twenty minutes walk from our house and where I can visit daily. She seems unconcerned that I am leaving her – and I thought myself indispensable! There is the usual hugging and kissing and expression of mutual adoration; but she now tells everyone that she adores him or her. She smiles as I leave and she wanders around talking to other residents. They are all old, for at sixty-nine, she must be the youngest, and she elicits no response from most of them, but she is undeterred.

My main reason for writing now is the hope that other carers, as fearful as I was, may find some reassurance from my experience.

The future is still uncertain, of course, but for now the situation is better than I had dared to expect.

For my own part, I can sleep all night and, unlike some of the people writing in the current issue of the Alzheimer Newsletter that, after caring for years they were at a loss for social contact and activity, I may resume amateur drama work and I have many good friends. In fact, as soon as I have sent this to Carol Jennings, I shall head for the pub. Cheers!

Challenging Behaviour and Dementia: Can we do better?
- Part Two: Challenging Behaviour

A person centred philosophy 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.

A challenging behaviour therefore reflects an unmet need on the part of the person with dementia and rather than only happening because that person has dementia its causes can be legion. Graham Stokes has perhaps done most to articulate the many causes of challenging behaviour for which he has suggested a simple four point model.

The challenging behaviour, Stokes argues, can indeed be brought about by physical changes within the brain and no-one who promotes the new social model of dementia would ever suggest that those changes are not present. In the case of the fronto-temporal dementias without doubt one of the main culprits are the very specific changes within that persons brain which are influential in bringing about at an early stage:

• Impaired social judgement leading to increased episodes of tactlessness or insensitive behaviour, sometimes indulging in practical jokes or foolish pranks.
• A loss of social restraint possibly leading to episodes of stealing or substance abuse.
• The potential for sexual misadventures or for demanding sexual behaviour.
• Potentially violent or aggressive outbursts.
• Restless or wandering behaviours.
• Hyperorality or dramatic changes in eating behaviour.
• A loss of insight or awareness regarding behaviour.

However there are other potential causes which must also be considered. These may be related to the social environment, that is to the relationships and contact the person with dementia has with others. There may be difficulties with the way that others communicate with or behave towards the person with dementia which may act as the trigger for a challenging behaviour.

There may be causes related to the physical environment, it may be under stimulating and people start to become noisy, it may be over stimulating and people become agitated, it may feel restrictive, be cold or uncomfortable and people start to wander.

There may be difficulties with the person themselves, this could reflect previous personality, maybe they always got confrontational with rude people, maybe they always had a short temper, maybe they just like to walk but are regarded now as wandering. There could be reasons related to health, they may be articulating pain or discomfort, they may be suffering the side effects of medication, usually those given to manage or control the behaviour.

The greatest thing that the person centred philosophy offers is the recognition that no challenging behaviour is without explanation although it may be difficult for us to try and determine what that explanation may be. If we accept that then we can also start to accept that if there is a problem it does not have to rest exclusively with the person who has dementia, it may well rest with us and the care that we provide, the attitudes that we have or the way that we communicate with the person who has dementia.

As well as seeking to empathically understand what is causing a challenging behaviour to occur it is also important to realise that it will not always be possible to prevent it from happening. By way of closing this paper I would like to offer some practical advice, drawn from many sources, for resolving challenging behaviours which may occur in people who have a fronto-temporal dementia. These de-escalation strategies are rooted in person centred care and for more lengthy advice I would draw your attention to the further reading at the close of this paper.

Resolution in aggression:

• Try to stay calm
• Do not take comments or insults personally
• Respect personal space, this may involve backing away or standing at an angle rather than a confrontational face to face
• Minimise the number of people getting involved, ask others to back away
• Maintain same level eye contact
• Speak slowly and gently reassuring that all is well
• Encourage talk not action
• Attempt to determine the cause of the behaviour
• Listen to what the other person says to you
• Accept the feelings that they are expressing
• Try to agree on something

Resolution in demanding sexual behaviour:

• Try to assess the behaviour and consider all the possible explanations
• Make a contingency plan and use it
• Stay calm and try not to over react
• Avoid confrontation
• Make use of distraction techniques
• Make use of delaying techniques
• Encourage purposeful tactile activities and incorporate different forms of touch into everyday life
• Use different bedtimes, beds or bedrooms

Resolution in “wandering” behaviour:

• Allow this to occur
• Maintain awareness of that persons whereabouts
• Ensure safety in the environment to prevent or minimise falls
• Accompany if possible turning wandering into a purposeful social activity
• Disguise doors rather than lock them
• Offer realistic alternatives rooted in that persons previous interests
• Assess for explanations such as pain or discomfort

Recommended reading:

• Goldsmith M. 1996 - Hearing The Voice Of People With Dementia
   - Jessica Kingsley Publishers London (ISBN: 1853024066)
• Chapman A. Jackson G.A Mcdonald C. 1999 - What Behaviour ? Whose Problem ?
  - Dementia Services Development Centre University Of Stirling (ISBN: 185769077X)
• Kitwood T. Benson S. 1995 - The New Culture Of Dementia Care
  - Hawker Publications London (ISBN: 1874790175)
• Stokes G. 2000 - Challenging Behaviour In Dementia
  - Winslow Press Oxon (ISBN: 0863883974)

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

Penelope Roques (re-elected)
Secretary PDSG