Two carers walk into a room to assist 86-year-old John (Pseudonym), who lives with dementia with his morning personal care routine.

One carer quickly introduces herself while the two continue having a conversation about a new TV series. She opens the curtains while the other starts picking up clothes and personal belongings from a chair and rearranging them into the wardrobe. She then picks up a pair of joggers and a jumper and hangs them at the end of the bed.

The other carer grabs a wet wipe and approaches John, who suddenly grabs his hand tight and starts shouting, “Help! Help!”

After initially trying to free her colleague without success, the other member of staff pulls the emergency alarm. Staff come rushing in and separate them. Almost immediately, the nurse is asked to administer PRN Lorazepam to “calm” John, who is described as “unsettled, aggressive and confused”.

But, what if the behaviour was not aggression? What if it triggered a past trauma and was simply a communication of fear?

It is work for us, but it may be home for them.

From my experience working in dementia care, carers can sometimes forget that dementia is progressive. As cognitive abilities decline, people often experience increasing fear, confusion, and disorientation to time, place and person. This can increase the risk of misinterpreting situations and intentions.

We come to work and then go home. Many of the people we care for live in these environments for longer periods. These places become their homes and provide them with a sense of familiarity, security and ownership.

If a stranger entered your home, started moving your belongings and attempted to provide personal care without clear explanation, you would likely feel frightened, defensive or distressed. However, if someone explained their intentions and gave you time to understand what was happening, your response might be very different.

When caring for people living with dementia, introducing yourself at every opportunity is important as they may not remember who we are each time we come into contact. Equally, is it important to give them time to process information. This requires patience and compassion.

No matter how good our intentions are, we may be viewed as strangers entering their personal space and making changes without their permission. This can create a sense of loss of control, vulnerability and confusion about our intentions. There is often less fear when people know who we are and what we have come to do.

Personal care is highly invasive and can threaten a person's sense of dignity. It can also be re-traumatising for people with previous experiences such as physical abuse, sexual assault, body shaming or other traumatic events (SAMHSA 2014). What appears to be aggression may, in some situations, be a person's attempt to protect themselves. They may be communicating fear, vulnerability or distress.

References

• Algase, D.L., Beck, C., Kolanowski, A., Whall, A., Berent, S., Richards, K. and Beattie, E. (1996) ‘Need-driven dementia-compromised behaviour: An alternative view of disruptive behaviour’, American Journal of Alzheimer's Disease, 11(6), pp. 10–19.
• Husebo, B.S., Ballard, C. and Aarsland, D. (2011) ‘Pain treatment of agitation in patients with dementia’, BMJ, 343, d4065.
• Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press.
• National Institute for Health and Care Excellence (NICE) (2018) Dementia: Assessment, Management and Support for People Living with Dementia and Their Carers (NG97). London: NICE.
• Substance Abuse and Mental Health Services Administration (SAMHSA) (2014) SAMHSA's Concept of Trauma and Guidance for a Trauma-Informed Approach. Rockville, MD: SAMHSA.