Dementia & Trauma
Survival of the Enabled
Being diagnosed with any serious illness can be traumatic, & dementia is no exception. However, many people live well with dementia & part of my philosophy is about enabling people to do just that. This means understanding a person, their story & their needs.
Over the years I have witnessed people living with dementia also living with trauma: The trauma or shock of being diagnosed with a progressive illness The trauma of being constantly unsure & fearful The trauma of being unable to make sense of your world where nothing seems to fit, especially after a move to a care home for example.
This example is being termed as “transfer trauma” and is more likely to occur in the earlier stages of dementia, where old routines have become a reliable source of survival for a person. The trauma of reminiscence People living with PTSD or late onset PTSD. Studies have shown that there is an increased rate of dementia among people, notably veterans, living with PTSD (1) When people are exposed to stress it usually leads to people being in a state of fight, flight, freeze, friend, flop & some new ones I heard recently, fall over & fool around.
These are ways we respond to pressure to cope or survive. Chronic stress and adversity can lead to trauma as much as any life changing event. Compound the diagnosis with knowing that your cognitive health is pretty much all down-hill in terms of progression and it’s no wonder people living with dementia also often live with depression, anxiety & other mental health illnesses. When people go into survival mode the upper brain, i.e. prefrontal cortex shuts down somewhat, so our executive skills such as reasoning, foresight, initiating, understanding facial expressions, and relating to people effectively can all go out the window. You rely more heavily on your emotional brain or limbic system and of course your survival brain; the brain stem. People affected often become hypervigilant & anxious.
If your cognition is already compromised due to dementia, this can make already difficult processes even more tricky. With prolonged trauma even the limbic system starts to shut down as your brain fully commits to survival mode only. Your ability can become compromised as you try to make sense of what might seem like strange surroundings, people or events. You may try to make sense by using old memories to relate to which can become very hard work when you try to piece together a puzzle that no longer fits, especially as parts of your brain constantly keep going offline making access to vital information inconsistent or impossible.
The more your brain struggles, the more stressed you become. It’s a vicious circle as stress which is designed to help you survive is shutting down parts of your brain starts to deprive you of your full ability. I have witnessed clients experience the horror of hallucinations & Post Traumatic Stress Disorder (PTSD). People living with dementia can re-experience old memories as if they are reoccurring right now. Although typically PTSD affects a person within 6 months after a traumatic event late onset PTSD is now being recognised as a mental health issue in its own right. Some veterans, who experience the beginning of cognitive decline experience PTSD for the first time in their lives decades after their experience(s) (2-5). I particularly remember one client who saw “bloody dead bodies everywhere” upon entering his room to deliver his usual weekly treatment.
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 & within minutes he was smiling looked comfortable, enjoying a leg & foot massage in the comfort of his armchair. I only took him to a safe place in his head, creating & holding a space where he could feel not just comfortable but look happy and engaged in the present. How can we help with the enormity of this? Part of what I do is acknowledge a person’s relived experience & help them towards feeling able to cope & feel safe. I use positive touch and a calm mid-range voice to reassure & help a person regulate. Sometimes validation helps with some resolution, other times it is about acknowledging the pain & anxiety a person is feeling in that moment and helping hold space 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 person living with dementia is constantly reminded of what they lose; their past, their ability to cope now & the worry about the future & what that may hold. Some people are scared all the time. Consider the impact of this chronic stress. A little stress is helpful to help us cope or survive, but when you are chronically stressed you are more likely to snap, become the less than best version of yourself, become aggressive. Anger is often the easiest way to express any number of feelings, especially when you feel threatened. We may not be able to perceive the threat of another person immediately, so this is where curiousity is helpful to understand the driver behind a behaviour. It is helpful to consciously slow your breathing and where possible ask the person you are with to join you in slowing their breathing. Take a hand and ask to walk somewhere together. It does not have to be far, down a hall, in the garden, from one room to the next & use the opportunity for a reassuring hand hold to provide soothing positive touch.
Positive Touch Techniques
Always gain permission first. This can be verbal or physical and is something I cover thoroughly in my training.
- Hold the person’s hand. Use gentle fingertip strokes in waves for an extra soothing effect.
- Gently stimulate the inner wrist of a person using little thumb circles or applying pressure points Pericardium 6 (about 2.5cun from the middle of the crease where the palm meets the wrist) & Pericardium 7 (in the middle of this crease) to clear & calm the heart and mind.
- Gently use the back of your fingers to smooth a furrowed brow to replicate parental touch.
- This can be extended down to the side of the face & into the scalp.
- Stimulating, rubbing & smoothing the top mid part of the scalp can activate Pressure Points Governing Vessel 19 to 23 (about 5.5 cun from the posterior hairline to about 1 cun from the anterior hairline) can lift depression, improve memory, promote sedation & emotional harmony.
Any gentle, repetitive facial touch may be soothing depending on the person’s preferences & what they associate with reassuring touch. This is especially true as a person progresses through the later stages of dementia. Facial touch often simulates soothing parental touch and stimulates the Trigeminal Nerve.
In turn, this promotes optimal function of the Vagus Nerve (part of the parasympathetic nervous system) sending a message to the nervous system to exit stress survival mode & recalibrate to calm.
Reminiscence can be helpful, but it can also be a trigger to past trauma and grief. It is useful to know where you can facilitate safe reminiscence with a person & just as importantly know what to avoid. Sometimes, revisiting old trauma will not help resolve it, but rather compound an established pattern which the person is re-experiencing. It takes a very skilled professional to help navigate trauma on a therapeutic level to reach a positive resolution. When a person’s brain capacity is fluctuating or compromised, it requires even more delicate handling. I think therefore, that when caring for, supporting or treating a person living with dementia it is helpful to bear in mind their upstream swim, & do what we can to enable them to regulate the flow through our survival kit.
A Survival Starter Kit
Acknowledge a person’s feelings before you consider diverting attention which can feel dismissive
- Validate feelings; let a person know that any feelings are OK & reassure they are safe to feel them with you. How they express them needs to be done safely.
- Be curious to gain understanding of the drivers behind a behaviour. All behaviour which we find challenging is linked to an unmet need.
- Adapt communication to enable understanding & enable people. Use communication aids, gesture, props & repetition to help
- Use your calm mid-range voice without patronizing to regulate a person -Regulate your breath & if appropriate breathe with the person asking them to join you. I often find that holding hands & smiling, while we breather together helps as it cues people in with dignity
- Use positive touch to regulate & build trust
- Use music, song dance & poetry to calm & regulate where appropriate
- Encourage relationships with other people as this can help people get over “transfer trauma” in particular. Isolation usually feeds into stress, anxiety, depression & trauma.
When the building blocks of trust & attachment are in place, and a safe relationship is established, and true healing can occur and/or quality of life can be dramatically improved. Although not an exhaustive list, these are some of the practical & immediately useable ways we can help a person re-access as much of their brain as possible. A calmer person can make more reasonable & rational decisions about how to react to any given situation and their life in general, and the beauty is anyone can learn to enable this way if they choose. 29/01/19
Clara Martinez-Clavera, Sarah James, Eva Bowditch, Tarun KuruvillaAugust 18, 2017Volume 21.03 July-September 2017 Pless Kaiser et al. 2012 Johnson D. A series of cases of dementia presenting with PTSD symptoms in World War II combat veterans. J Am Geriatr Soc2000; 48(1):70–2. (2) Mittal D, Torres R, Abashidze, et al. Worsening of post-traumatic stress disorder symptoms with cognitive decline: case series. J Geriatr Psychiatry Neurol2001;14(1):17–20. Dallam D, Mellman T, Bhatnagar A, et al. Trauma reenactments in aging veterans with dementia. J Am Geriatr Soc2011;59(4):766–8. van Achterberg M, Rohrbaugh R, Southwick S. Emergence of PTSD in trauma survivors with dementia. J Clin Psychiatry2001;62(3):206–7.
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