• peter2809

Understanding why a person with dementia may display distress behaviours. Part 2

Updated: Oct 25, 2020

Triggers may be a clue


The physical needs of people with dementia often get missed, not noticed or even mistaken for behaviours that are inappropriate, behaviours.

Often unable to understand what the pain is or unable to communicate that they are in pain. The person banging their head against the wall because they have a headache is often seen as self harming, disruptive, challenging instead of the recognition and understanding from others as to why it is happening.

NICE Guidelines (2006) states “If a person with dementia has unexplained changes in behaviour and/or shows signs of distress, health and social care professionals should assess whether the person is in pain, using an observational pain assessment tool if helpful.” However, the possibility of other causes should be considered.

We often misdiagnose pain when it is considered that the service user is exhibiting behaviours that challenge, which if the reason is pain will not help the service user.

Ways in which family and staff can recognise pain in someone with Dementia is. Talk to the person direct and ask questions, some people no matter at what stage their memory is at, having short term memory will only tell the service user the pain exists at that moment, but never the less it is still reality to them.

Getting to know the person from the first moment they have been diagnosed with dementia can only establish an understanding of their daily routine, which will show any differences in their behaviour.

Behaviour such as 

> vocalisations (or making sounds): whimpering, groaning, crying

> facial expressions: looking tense, frowning, grimacing, looking frightened

> changes in body language: fidgeting, rocking, guarding part of body, withdrawn,

Make note of changes in the person and explore their behaviours to determine if pain is their concern, the use of pain diary will also help determine the cause of the pain, its severity, when it occurs and what helps to make the pain better or worse.

The need for security

Security for the person gets forgotten once they develop dementia that causes behaviour, feeling safe is a fundamental psychological need for everyone.

Yet we remove people from their home where they have lived for most of their adult lives to a place devoid of familiarity and comfort.

One single room with furniture and decor that is unknown to them, introduced by a stranger. Outside the door is a corridor with strange people walking some with purpose and some because they too have a feeling of loss and are searching for an answer.

The staff will meet you with a smile, a drink and in no time because they are busy leave you to find your own way around, make yourself familiar.

Night time becomes a frightening place, shadows, unfamiliar noises causes trauma, confusion and yet it is expected that the person will settle and if not a doctor will be called to hold a review to see if you need medication to help you sleep.

When all you needed was someone to take the time to understand and reassure you, comfort you when you ask to go home.

National Minimum Standards (2000) states “Prospective service users and their relatives and friends have an opportunity to visit and assess the quality, facilities and suitability of the home.”

Much like the person’s family were shown the home, the staff will need to take time to introduce the service user into the home, to staff and other service users.

National Minimum Standards (2000) states “person's with dementia find the lifestyle experienced in the home matches their expectations and preferences, and satisfies their social, cultural, religious and recreational interests and needs.”

Taking the time to introduce the person is like trying something new for the first time. You need time and lots of it, reassurance, guidance and familiarising with the whole environment. Inactivity becomes the routine for the person, inadequate stimulation for the individual brings on boredom and the best way not to be bored is to sleep.

Even in old age we need stimulation to keep our body and mind active. Yet when the person becomes active, getting up from the chair to relieve the body of stiffness, they are often told to sit back down because they might fall.

Care staff have become risk management guru’s giving reasons as to why the person cannot do something against finding a way to achieve it, to make it failure free. Dowling (1995) says “Above all, activity is the responsibility of everyone involved in an individual’s care.”

Stimulation comes in many forms from a simple chat, touch, to an activity or interest that takes a period of time.

Liaschenko (1997) as cited in Warnes (2000). P.66 states that Person Knowledge is based on understanding “biographical life” which comprises of three components,

> agency – a person’s ability to engage in activity that is meaningful for them

> temporality – the person’s normal routines and patterns of living and how illness interferes with and modifies them

> space – a person’s social relationships and interactions

Family and staff will need to gather information from the person, relatives and friends. It would benefit the person if a meeting with everyone concerned and use tools such as life history books or essential lifestyle plans, these tools enable the carers to build a history about the person providing a framework to the service user’s needs.

The tools used will provide guidance to,

• Learn what is important to the person in everyday life

• Assess issues of health and safety

• Assess what the person might want to learn to get more of what is important

• Offer opportunities for learning that help the person get more of what the person wants

• As the person gets more of what is important in everyday life –

• Look for opportunities for the person to spend time in places and doing things where they are welcomed by the others there.