A Symptom or a Human Response?

Doris sits in her wheelchair by the edge of the dining tables, a busy thoroughfare, grasping at people as they walk by her, each one swerving, avoiding her grabbing hands. Each one another painful rejection.

I am stood with a group of carers watching her as I ask to catch up with one of them to get an update about one of my clients.

“Watch out for Doris today,” I am warned, “she’s being really aggressive and lashing out.”

I thank the carer for the warning, observing Doris as she becomes increasingly agitated with each person avoiding her hands hitting out.

Agitation comes under the umbrella of Behavioural & Psychological Symptoms of Dementia (BPSD), such as depression, apathy, wandering and other states of being. Agitation itself means worried or anxious and/or that a person often wants to change their situation through protest or argument. It can present as behaviour which we find difficult to deal with. When you consider though that behaviour is a form of communication conveying unexpressed needs or feelings that may be hard to verbalise, surely it is reasonable to suggest that agitation is not a symptom but a human response to a horrible or scary situation, a response to pain. That pain can be physical, mental or emotional. Maybe the person feels they need to change their situation. I think Doris did.

When we look for the reasons behind the agitation we can think of ways to support Doris to have her needs met more humanely.

Brene Brown considers anger in her book “Atlas of the Heart” as a gateway emotion which masks other emotions. Look deeper, be curious and enquire about the emotion behind anger and we may discover grief, betrayal, disappointment, anguish, guilt, confusion, embarrassment or shame. I could go on, but you get the picture.

I think agitation is similar to anger as a gateway feeling or state, there are emotions or needs behind it.

People who are seen as having symptoms are too often medicalised and then medicated. Who is this serving? Our inconvenience and lack of resources, training, understanding or the person’s needs? Our discomfort at seeing another person in discomfort or pain? Are we stripping a human being of being able to express emotions which may be because they feel rejected, terrified because their reality makes no sense or ashamed because they have lost control of ability to function as they used to? Really all we need to prescribe is time, curiousity, compassion and humanity and where possible enable them to change their situation.

I excused myself from the group of carers and approached Doris, my hands outstretched, a huge smile on my face, “Doris! Hello! I love you!”

Imagine the deep feeling in my chest when she pulled me in and said, “Oooh, I’ve missed you!”

I don’t think it was me particularly that she missed, but what I represented, human connection and love. The feeling that she mattered.

Each time she was avoided she felt the pain of rejection. What happens when we feel rejected, we can counter-reject, defend ourselves by becoming angry or agitated or we shut down and disconnect presenting as what we call a “vegetative” state, another BPSD which I think can most often be prevented with a good old dose of loving human connection. Thankfully, Doris still had fight in her being an ex-union rep and was willing to fight for that connection, trying to tell those around her that her voice still mattered. Someone just had to hear her, really hear her.

I understand that dementia can affect tour brain and in turn that can affect our behaviour or can be seen as a symptom, e.g. delusions, hallucinations and maybe becoming more emotionally labile, but more often than not I absolutely feel that a person’s behaviour is more to do with a natural human response. We need to address this first, before dismissing it as a symptom and we need to learn to sit with that person’s discomfort as we would with a friend or family member, with dignity, respect and with love.