Challenging the term BPSD (behavioural and psychological symptoms of dementia): A view from someone who lives with dementia

As a person living with dementia, one of my most severe symptoms has been loss of balance. Even to walk across a concrete floor feels like the ground is buckling and weaving beneath me. At my current stage I can constantly reassure my brain that it’s getting the wrong messages and the floor is not trying to knock me off my feet. As I lose my cognition I won’t be able to carry out this internal dialogue and so will become more panicked. I will also probably not be able to explain to others what is happening for me, and I realise that this may be interpreted by care staff as my being difficult or uncooperative, and I run the risk of being sedated in order to protect the staff if I begin to lash out at staff.

BPSD is an entirely false concept and should NEVER be used as a reason for either physical or chemical restraint. Behind each “behaviour” lays a reason and it is up to the individual carer to spend time and effort in getting to know that person and how best to interpret which particular need is not being met. In the above scenario it would help me if staff used extra patience in explaining that they were going to help me move from one chair to another, and reassure me that was no rush. Someone on each side rather than being expected to trust to a walking frame. This would have the dual benefit of my feeling the power of human contact, which means so much in dementia care. The transfer could then be made to feel that I was being given a reassuring hug and this would reduce my stress levels.

There are so many areas where the skilled use of well trained and sensitive care workers can remove the need for medication, thereby allowing us to remain in the present and relate to those around us. This practice not only adds to our quality of life, but means that care staff gain more benefit in growing relationships with those in their care. Often the excuse for not working in this way is to say, “we don’t have the time for that,” but staff are a resource, and in order to raise standards for all it’s often a case of how we make best use of all our available resources. And in these cash strapped times where social care is in such a financial crisis, isn’t it worth finding ways to cut the expensive drug budget currently being used.


Written by Julie Hayden, Expert by Experience.





Andrea Capstick from CfADS comments: Thanks for this, Julie. It’s a really powerful point, reminding us not to take the easy route of labelling normal human reactions to stress or discomfort as ‘symptoms of dementia’. Just to add that it really is in the best interests of staff too. If they invest the time upfront to provide reassurance and to anticipate in advance what might upset people, they are much less likely to end up having to spend time, energy (and, yes, possibly someone lashing out at them) an hour later when the situation has escalated out of control. Person-centred care is a good use of time and resources, as well as the right thing to do for those living with dementia. Andrea Capstick