Behaviour in dementia.

Things have not been going so well for my demented step-mother-in-law in a nursing home.  She has been biting the other residents.  The home itself has been suffering from notable changes in staff and new management, everything is in a state of flux and though there has been plenty to tell you about, I was waiting for circumstances to settle down before I could tell you anything you might relate to.

The current state of the care industry. like the health service, is a matter of great concern to anyone with a relative needing care, or a family member with a health issue.  The OH, sleeping alone and tracking his own snoring on an app on his mobile, was delighted, upon reporting his findings to his GP, to be told he would be offered a hospital appointment and time at a sleep clinic.  The letter from the hospital arrived, he went through the online booking procedure and booked himself a consultation at the earliest available time, eleven months hence.

Similar delays could be affecting the start of care or help, if a demented person is your responsibility.  Dementia of most forms is a long term illness but sometimes, as the disease advances, issues may become urgent.

When my mother did strange things, or became aggressive, the private agency carers referred to it as ‘behaviour’ and wrote exactly that in the notes that they made at the changeover of every carer.  ‘Mrs…… is exhibiting behaviour.’

If a sufferer is cared for at home, behaviour is less of an issue than if it occurs in a shared residential setting. Aggression is one of the most frequent behaviours and often seems to arise from the patient’s inability to express themselves as they lose their words.  If you cannot tell someone you are hot or cold, or in pain, how do you seek help to remedy the problem?

The initial problem with SMIL was that she had had a pelvic prolapse, years before she became demented.  A prolapse is when some of the organs that should be inside your body make a bid for freedom through any available route.  In the case of SMIL, a doctor fitted a pessary, a supportive device which needed to be changed every six months.  SMIL had not been long at the nursing home when her behaviour deteriorated and I wondered about the interval since she had last had the device changed.  I alerted the nursing staff, who consulted the doctor’s records and found the change was overdue.  Once the device had been changed for a new one the behaviour magically disappeared.  Since then on one occasion the nursing home has been up to speed but on four occasions I’ve reminded them.  Today I spoke to SMIL for the first time in a few days.  She has been asleep every time I rang, or causing mayhem.  I explained to her what I thought might be making her poorly, asked if she was in pain and obtained her verbal agreement to see the doctor, who will be at the home on Wednesday, for the procedure.  I intend to telephone every day until Wednesday and remind the nursing staff and speak to SMIL and remind her, remembering that memory loss is one of the chief symptoms of dementia.

All of this is an argument for keeping your demented person at home in familiar surroundings with the people who know them best.  There are any number of physical conditions which can affect people and need regular maintenance which the immediate family will be aware of but strangers will not necessarily suspect are a problem until the situation worsens, causing behaviour.  Allergies to medication, joint problems, elderly organs, ingrowing toenails, food intolerances…the list of things that could be horribly wrong and causing pain or discomfort resulting in behaviour is almost endless.  That’s before we even get started on the fragility of elderly skin, the inefficiency of senior digestion and elimination and something as simple as needing different glasses for looking and reading and not knowing which ones you are wearing.

Long term readers will be well aware of me banging on about keeping your demented person with you at home as long as you possibly can.  However, you need to offset this against the wear and tear on you, the family member carer.  If you go for burnout and do everything 24/7 yourself and then crash and burn the demented person is stuffed.  If you can arrange for some form of  regular respite care from the very beginning you are saving yourself for when they most need you.  It could be as simple as a weekly visit to a local social group or a visit from local authority carers, or a family member, to let you get out for an hour.  If you put the demented person into residential care too soon you are saving yourself but at their expense. 

There’s no getting over the most delicate balancing act there can be when you are looking after another highly dependant human being.  Giving them as much independence and the chance to have a say in decisions affecting them will undoubtedly affect their attitude which in turn has an impact on behaviour.  Talking to the demented person as soon as possible after diagnosis is a good idea.  I chopped up the chats with my mother into bite sized pieces.  I wrote down anything helpful and any conclusions we had reached and simplified descriptions of what was wrong, what the doctor had said and so on.  I saved the chats for good days  but we did have them all.

If, as and when your demented person goes into residential care, apart from the longest sleep you’ve ever needed, establishing regular lines of communication is your priority.  When my mother eventually moved in, the staff suggested that I leave her fairly soon, so I did.  That evening she had a fight with another resident, who came into her room and tried to take her blanket, which fight, as she was quite large, she won.  I should with hindsight, have familiarised her with the way the door locked but I was in a state because I had just left my mother in a home and she was in a state because I had just left her in a home.

None of this is easy, which is why timing is everything.  If you wait to get some help or respite until you are utterly exhausted, your decisions may not be the best.

If you are a nice person, all your thought will be unsparingly for the demented person.  This is a mistake if they are depending on you, you need to consider your wellbeing too.

If you are selfish your first thought may be: how am I going to do this and why am I expected to do it anyway?  Unless you were a self raising baby, like the flour with the baking powder in it, you know the answer really.  I promise you if you take this challenge on board you will think more of yourself at the end of it than you did previously.

Whatever the cause of behaviour in demented people, some solution, even partial, may lie in communication.  Remember your person is still in there somewhere, lost in the disease, but still them.  Talking to SMIL today, I spoke slowly and clearly but didn’t shout or patronise, I asked if she was in pain and waited for the response.

In memory loss, establishing as early as possible that the demented person can communicate through you, making time to listen to them, so they know they are heard, increases confidence.  If they are more confident that their needs, which they have such difficulty expressing, can be heard, understood and acted upon, they can be calmer.

If it were you, if you had no memory of yesterday but found yourself abandoned in a strange and terrifying place with strangers, some of whom are obviously dangerous and you have no means of communicating, what would you do?

If it isn’t you, be glad of every happily sane moment.

And look after your pelvic floor.

And lift.

Count to ten.

And relax.

Nine more repetitions and we’re done for this morning.


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