Conference 2022: Dementia, trauma and how therapists can help

By workshop leader, Nicolle Mitchell originally written for FHT.

Being diagnosed with any serious illness can be traumatic, and dementia is no exception. However, I believe that by understanding a person, their story and their needs, we can help them to live well and improve their
quality of life.

Over the years I have witnessed people living with dementia also living with the following examples of trauma:

• The trauma or shock of being diagnosed

• The trauma of being constantly unsure and fearful

• The trauma of being unable to make sense of the world, especially after a move to a care home. Now commonly referred to as ‘transfer trauma’, this is more likely to occur in the earlier stages of dementia, where old routines have become a source of survival for the person.

• The trauma of reminiscence or living with post- traumatic stress disorder (PTSD), or late-onset PTSD, most notably in veterans.

When exposed to stress, it leads to a state of fight, flight, freeze, friend, flop or – some new ones I heard recently – fall over or fool around. These are all ways that we respond to stressful situations in order to cope or survive. Chronic stress and adversity can lead to trauma, just as much as any life-changing event.

Compound the diagnosis of dementia with knowing that your cognitive health is going to progressively decline – it’s no wonder that many people living with this condition also live with depression, anxiety and other mental health illnesses.

THE STRESS RESPONSE AND DEMENTIA
In survival mode, the upper brain (prefrontal cortex) shuts down. This means that executive skills, such as reasoning, foresight, initiating, understanding facial expressions and relating to people, can all go out of the window. We rely much more heavily on our emotional brain (the limbic system) and survival brain (brain stem).

We can also become hypervigilant and anxious, and if our cognition is already compromised because of dementia, this can make already difficult processes even more tricky. With prolonged trauma, the limbic system starts to shut down too as the brain fully commits to survival mode.

Our ability to function can become compromised as we try to make sense of seemingly strange surroundings, people or events. We might try to use old memories to relate to or make sense of a situation, but this can be hard work when we try to put together pieces of a puzzle that no longer fit, especially when parts of the brain constantly go offline, making access to vital information inconsistent or impossible. The more the brain struggles, the more stressed we become. It’s a vicious circle, as the very stress response designed to help us survive is shutting down parts of the brain that deprive us of ourability to function.

DEMENTIA, HALLUCINATIONS AND PTSD
I have witnessed clients experience the horror of hallucinations and PTSD. People living with dementia can re-experience old memories as if they are occurring right now.

Although PTSD typically affects a person within six months after a traumatic event, late-onset PTSD is now being recognised as a mental health issue in its own right. Some veterans going through the early stages of cognitive decline experience PTSD for the first time, decades after the traumatic experience.

I remember entering the room of a client I was treating weekly, who could see ‘bloody, dead bodies everywhere’. I acknowledged how horrible this was for him and took his hand. I then explained who I was and told him I would take him somewhere safe. I talked him gently through what was happening and within minutes he was smiling and enjoying a leg and foot massage in the comfort of his armchair. I had taken him to a safe place in his mind, creating and holding a space where he could feel not just comfortable, but happy and engaged in the present.

SUPPORTING CLIENTS WITH DEMENTIA AND TRAUMA
As therapists, how can we help with the enormity of this? Part of my approach is to acknowledge a client’s relived experience and help them to feel they are able to cope. I use positive touch and a calm voice to reassure the client and help them self-regulate. Sometimes it’s about acknowledging the pain and anxiety a person is feeling in that moment and simply holding space (being present) with them, so they can come out the other side in their own time, knowing they are safe to feel whatever they feel.

Expression is so important.

A client with dementia is constantly reminded that they are going to lose their past, as well as their ability to cope and function in the present. They worry about the future and what that may hold. Some feel scared all the time. Consider the impact of all this chronic stress – they are more likely to snap and become the less than best version of themselves. Anger is often the easiest way to express any number of feelings, especially when we feel threatened.

As therapists, we may not be able to immediately work out what it is that the client perceives to be a threat. This is where curiosity on our part can help us to understand the driver behind a particular behaviour.

When caring for, supporting or treating a client living with dementia, it is helpful to bear in mind their upstream swim, and to do what we can to help them navigate their way through any rough water by using the survival starter kit (see Survival Starter Kit panel, above).

Although not an exhaustive list, these are some of the quick and practical ways we can help a person reaccess as much of their brain as possible. A calmer client can make more reasonable and rational decisions about how to react to any given situation and their life in general, and the beauty is that any therapist can learn to facilitate this process.
When the building blocks of trust are in place, and a safe relationship is established, true healing can occur and quality of life can be dramatically improved.

A SURVIVAL STARTER KIT

• Acknowledge the client’s feelings before you consider diverting attention; this can feel dismissive.

• Validate feelings. Let the client know that any feelings are okay and reassure them that they are safe to express their feelings in front of you (assuming these are non-threatening).

• Be curious to gain understanding of the drivers behind a behaviour.

• All behaviour that we find challenging is linked to an unmet need.

• Adapt communication to help each other’s understanding.

• Use communication aids, gestures, props and repetition.

• Use your calm mid-range voice, without patronising, to regulate a person.

• Regulate your breath and, if appropriate, breathe with the client, asking them to join you.

• Use positive touch to regulate and build trust. Holding the client’s hand, use gentle fingertip strokes in waves. Gently use the back of your fingers to smooth a furrowed brow to replicate parental touch.

• Use music, song, dance and poetry to calm and regulate, where appropriate.

• Encourage relationships with other people, as this can help clients to get over transfer trauma in particular. Isolation usually feeds into stress, anxiety, depression and trauma