Dementia & Trauma

Being diagnosed with any serious illness can be traumatic, and dementia is no exception.

Many people live well with dementia and part of my philosophy is about enabling people to do just that.

However, over the years I have witnessed people living with dementia living with trauma:

1. The trauma or shock of being diagnosed
2. The trauma of being constantly unsure and fearful
3. 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.
4. The trauma of relived experiences from the past

How can we help with the enormity of this?

When people are exposed to chronic stress it can lead to people being in a state of fight, flight, freeze, friend, flop and some new ones I heard recently, fall over and fool around. These are ways we respond to stress to cope or even survive. Chronic stress though 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 and 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, initiating, understanding facial expressions can all go out the window. You rely more heavily on your emotional brain or limbic system and of course your survival brain, that is, the brain stem, often becoming hypervigilant and anxious. If your cognition is already compromised due to dementia, this can make life very tricky.

Your ability to try and make sense of what might seem like strange surroundings, people and events can become compromised. 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.

I have witnessed clients experience the horror of hallucinations and Post Traumatic Stress (PTS).  People living with dementia can re-experience old memories as if they are reoccurring right now. Typically PTS affects a person within 6 months after a traumatic event. However, some veterans, who experience the beginning of cognitive decline experience PTS for the first time in their lives decades after their experience(s) (1-4). I particularly remember one client who saw “bloody dead bodies everywhere” when I entered his room to deliver his usual weekly treatment.

Part of what I do is acknowledge their relived experience and help them towards feeling able to cope and feel safe. I use positive touch and a calm mid-range voice to reassure and help a person regulate. Sometimes validation helps with some resolution, other times it is about acknowledging the pain and 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 and what that may hold. Consider this chronic stress and its impact. 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.

I think therefore, that when caring for, supporting or treating a person living with dementia it is helpful to bear this upstream swim in mind, and do what we can to enable them to regulate the flow through our survival kit including understanding drivers behind behaviour, adapting communication, using our calming mid-range voice and therapeutic touch. This builds trust and attachment. When the building blocks of trust and attachment are in place, and a safe relationship is established, true healing can occur and quality of life can be dramatically improved.

These are some ways we can help a person re-access as much of their brain as possible so they can make more decisions about how to react to a stressful situation and their life in general, and the beauty is anyone can learn to enable this way if they choose.

A Survival Starter Kit

• Acknowledge the person’s feelings before you consider diverting attention or providing reassurance. Diversion or reassurance alone can feel dismissive.
• Validate feelings Let the person know that any feelings are OK and reassure them that they are safe to express themselves in front of you (assuming these are non-threatening).
• Be curious to gain understanding of the drivers behind a behaviour. Most behaviour that we find challenging is because a person is being challenged and linked to an unmet need or unexpressed feelings.
• 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 both of you
• Regulate your breath, and if appropriate, breathe with a person asking them to join you
• Use music, song, dance and poetry to calm and regulate where appropriate.
• Encourage and build relationships this will not only help build trust, but when you need to leave a person, another trusted person with a good relationship can help get over transfer trauma in particular. Isolation usually feeds into stress, anxiety, depression and trauma.
• Consider your environment, is it safe, nurturing, warm and comfortable or is it likely to trigger stress, create disconnect and a sense of isolation? Is it cosy or clinical? Is it homely or institutional? Sometimes it may be best to move to somewhere more conducive to your time together, maybe another room, the garden, or adjust the space you are in e.g light, music, interruption, disturbance. Maybe a “Do Not Disturb” sign on the door with permission.
• Use sensory connection engage in activities which appeal to other senses to connect. Whether this be making pasties together, going through a hamper of vintage clothes, blowing bubbles, using products that smell great and appeal to the individual, enjoying food and drink together especially something from a person’s past, that might evoke comfort or shared stories.
• Wear something a conversation piece like a vintage silk scarf you can share stories about, a t-shirt with a positive message, a fluffy jumper or colourful accessories like talking point jewellery. This can break down boundaries created by uniforms and create an atmosphere of ‘power with’ rather than ‘power over’.

19/10/18

• 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 Soc 2011;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.