One of my clients was moved from hospital to a sub-acute facility the day before yesterday. Broken hip, hip replacement, infection, prosthesis removed, infection carries on. Imagine the trauma for a person living with dementia who cannot communicate verbally. The surgeon was “kind” enough to avoid general anaesthetic in favour of an epidural. Regardless, the trauma of being in hospital, being physically restrained and sedated took its toll. My client is distraught, tense, not comprehending what is going on.
The day before yesterday he was moved to the sub-acute after a few weeks in hospital. There is no process in place to discuss rehab with the family. No one communicates anything to his exhausted and exasperated wife or their sons. Until today, while his wife is having lunch with a family member, a doctor from the sub-acute phones her with the news that her husband needs palliative care, telling his wife that “she gives him a month or two”. By the time I get to the sub-acute, my client’s wife actually thinks that she might be hallucinating…”could that really be what the doctor told her? What now? What does that mean?”
I do not wish to throw stones at doctors, hospitals or sub-acute facilities. I do however wish that the world would start seeing people living with dementia as PEOPLE with the same rights as any other living person to be respected, to be treated with dignity, being spoken to and not about.
“We have to change our minds about people whose minds have changed” – Dr. Allen Power Author of Dementia beyond drugs and Dementia beyond disease.
In 2013, the American Psychiatric Association published the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Dementia was renamed ‘major neurocognitive disorder’ in the DSM-5, which also recognises earlier stages of cognitive decline as ‘mild neurocognitive disorder’. This was partly done in an effort to destigmatise the condition. Not all people living with MCD are ‘demented’… Alongside this is the generalising about what is called BEHAVIOURAL AND PSYCHOLOGICAL SYMPTOMS OF DEMENTIA (BPSD).
If this remains how we label the distressed reactions or efforts of people living with dementia to communicate, we will never really see the person behind the disease. In my opinion, there is very little of the BPSD that is not part of a desperate effort to communicate frustration, helplessness, anger, resentment, aggression etc AT HOW THEY ARE TREATED BY OTHER PEOPLE. People living with dementia who can no longer communicate verbally znd other ways to communicate, and when WE don’t understand them, they try everything in their power to make us hear or see how they feel. The problem is – we don’t understand them. We want them to be rational. And if they do not ‘co-operate’, we often drug them. From the internet on Risperdal, banned in the USA: Risperdal has another serious side effect that has been widely publicized and has created some legal issues for Johnson & Johnson. This dangerous side effect involves movement disorders which can become worse over time. These abrupt, often violent movements are known as extrapyramidal symptoms (EPS) and can be permanent even after Risperdal is discontinued. Symptoms of EPS often include:
- Tremors similar to those caused by Parkinson’s disease
- Drooling or inability to control mouth muscles
- Facial Tics
- Abnormal head, shoulder, and limb movements (Tardive Dyskinesia)
- Restlessness or inability to stay still (Akathisia)
- Loss of voluntary movement (Akinesia)
- Stiffening of the tongue and/or jerking chin toward neck (Torticollis)
- All of these side effects can create their own new, potentially dangerous or deadly side-effects. For example, torticollis can cause suffocation from an inability to move one’s tongue. Tremors or tics can cause unexpected movements that can be extremely dangerous near things like stairs or ledges.
Tom Kitwood talked about creating a malignant psychology in the care of people living with dementia. What is malignant social psychology? Malignant social psychology exists in relationships which devalue, dehumanize and diminish the person with dementia – for example, when the person is stigmatised, infantilised, objectized or ignored, a loss of personhood ensues. According to Kitwood (1997), people living with dementia, like all of us need:
- Recognition – they are still our mother, father, a doctor or a teacher.
- Negotiation – try to go into their world, see where you can meet them.
- Collaboration – do with them, not for them, involve them, communicate with them in everything you do.
- Play – life can be too serious sometimes, be playful, create spontaneous moments, laugh!
- Timalation – stimulate ALL the senses: touching, hearing, sights, sounds and beautiful smells.
- Celebration – celebrate life and all its events.
- Relaxation – give time for rest and relaxation.
- Validation – validate the person, see them, hear them, afzrm them. Share your honest thoughts and feelings.
- Holding – hold them tight, physically. But also holding space – give them your presence.
- Facilitation – try and create the world around their needs and desires, not just yours.
- Creation – growth is always important in life. Create new ways of communicating and being with.
- Giving – give of yourself, your time, your presence.