One sided or Lob sided – Dementia care is still way off balance.

One sided or Lob sided – Dementia care is still way off balance.

From over 15 years of time spent observing families and couples interact; from what people with dementia have told me about their needs and questions, feelings and fears around the time of diagnosis; and more recently from the excellent eloquent testimonies of the likes of Kate Swaffer and Wendy Mitchell in their daily blogs, I have become increasingly concerned about the overwhelmingly carer-focussed approach in many areas of the field of dementia care.

The predominantly care-for-carer approach has prevailed for many years. The Alzheimer’s Society was founded as a carers’ organisation in 1979 and Carers UK has a strong national voice, incorporating Crossroads care now. This support is of course absolutely necessary, but it must not be at the expense of the voice and support of the person with dementia. I am often told in social situations when talking about what I do that ‘it must be worse for the carer’. I always try to point out that it is difficult for both parties in different ways and they cannot be compared. Although there are many examples of the voice of people with dementia getting a greater profile (the Dementia Engagement and Empowerment Project – DEEP – being an excellent example) they are still in their infancy and there still remains an uneven playing field where predominantly only one side of the care-giving relationship is heard.

Historically, then, the stress and burden model has prevailed and has always made me feel extremely uncomfortable as it can, however unwittingly, imply blame on the person with dementia as the cause of this stress. Kate Swaffer has written widely on the phenomenon she has termed ‘prescribed disengagement’™. She explains how the overwhelming message she received from her doctors (the prescription) was to give up work, go home and withdraw (disengage). She almost did it too like so many other people living with dementia who are constantly fed this line that they are a burden.

My concern is that many dementia services (often well-intentioned) only serve to reinforce the blame-laden stress and burden model. In this article I want to focus on the presentation of what are often referred to as ‘challenging behaviours or behaviours that challenge’ in advice leaflets, the public media, and in many courses either on-line or face to face. They are frequently presented like a warning. Carers are warned about certain ‘behaviours’ to watch out for. These behaviours mentioned are usually framed under the medically camouflaged ‘BPSD’ or Behavioural and Psychological Symptoms of Dementia. Am I the only person who finds this deeply worrying? A classic lead into diagnostic overshadowing – an extremely convenient ‘get out’ from seeking to truly understand what more often than not are understandable reactions to highly stressful situations that many people with dementia face every day. ‘What do you expect? They have dementia.’

So these frequently termed ‘challenging behaviours’ are often presented as a warning to carers but ask yourselves, as I have, to what extent are people with dementia warned about the possible challenging behaviours of those around them? Currently never, and that’s just not fair.

Where are the supportive information leaflets, the training sessions or the tabloid headlines that flag up the devastating and dangerous BPSC (The Behavioural and Psychological Symptoms of Caring) that could cause so much stress and be such a burden to those people who just happen to be trying to live well with dementia? So, to redress the balance, below I want to flag up a warning for those unsuspecting people with dementia about some of the challenging behaviours a carer might present you with.

They might answer the question you’re about to answer

They might talk over you

They might point out your mistakes

They might correct you

They might talk about to others when you’re there.

They might speak too quickly for you

They might interrupt you in full flow

They might dismiss what you say as untrue or false.

They may patronise you.

They may frequently undermine you

They may expose you to failure just to show others they’re right.

They may seek frequent opportunities to catch you out and ‘score points’ in the relationship.

They may control you

They may disempower you.

They may blame you for your dementia

They may tell you off

They may treat you as ‘full blown’ from the moment of diagnosis.

They may hide things from you.

They may contradict you

They may try to rip you off or deceive you

They may ignore you.

They may take away your independence.

They will frequently test you

They may exclude you

They may shout scream or cry

They may humiliate you or make you feel a burden, when offloading about how stressed they are.

If you are a carer reading this and thinking how you’re not like that at all, how unfair and disproportionate all this is to be labelled as some sort of desperately patronising control freak who is perhaps in need of medication to control these behaviours, then welcome to the world of so many people living with dementia who have been portrayed as a burden and as mad, bad and dangerous!

Carer support services are well established thanks to the eloquence of carers over the years in expressing their needs. They are absolutely fine and necessary but they need to be matched by similar opportunities for individuals living with dementia too. Recently I saw a course advertised for carers and people with dementia. One session was to look at ‘behaviours’. I immediately asked myself questions such as:

  • How comfortable will people with dementia feel with some of the content?
  • How exactly is this session going to be delivered?
  • How will information be pitched and what will be the effect upon a person perhaps newly diagnosed?
  • How comfortable will people with dementia feel with some of the content?
  • How much of the course content will address the questions, concerns and fears of people with dementia?
  • Will they take an easy option and invite the people with dementia to leave the room or not attend that particular session?

Providers have a real responsibility to cover BOTH sides of the caregiving relationship. (I’m not sure whether ‘caregiving’ is the right word). They should not shy away from properly including and responding to the needs, and experiences of people living with dementia in their published materials, and information programmes. Initiatives like ‘Dementia Friends’ have to their credit sought to address this to some degree, but decades of the stress and burden model and myth and misconception around behaviours, mean we cannot rest whilst we still hear that question which makes my heart sink – ‘so what happens when they get aggressive’. Continue reading