Dementia Aware  

Dementia and behaviour

What you need to know about the management of behaviours in the person with dementia

Behaviour is a complex phenomenon affected by interaction of cognitive impairment, physical health, mental health, past habits, personality and environmental factors.

The regression of dementia is more than just the loss of brain cells.

For people with dementia, the impairment in cognition, difficulties in social settings and in day-to-day, self-care activities, can make them increasingly isolated and detached from the world, and they start to feel a loss of social connectedness and belonging.

With loss of identity, of independence and control, comes a loss of personal security and with increasing insecurity comes a sense of powerlessness and behaviours such as jealousy, paranoia, shadowing, agitation may occur.

Most people with dementia will also exhibit a loss of ability to control impulses and to manage stress and may ‘act out’ with childlike frustration.

As the dementia continues to regress and the person requires more assistance with ADLs (bathing, toileting) feelings of embarrassment, shame, and anxiety may show as aggressive behaviour.

It can be very upsetting and stressful for the caregiver (family) to see their loved one behaving in a strange or atypical way. Many caregivers report feelings of shame and embarrassment, frustration, helplessness, emotional pain and great anguish as they try to help the person with dementia.

When a person with dementia exhibits a behaviour, it is important to try to remember that:

  • The behaviour is not planned or deliberate
  • The behaviour is an expression of an unmet need
  • There is always a reason for the behaviour — people with Lewy Body dementia usually experience hallucinations/delusions, whilst people with frontotemporal dementia typically experience disinhibited behaviours

The main reasons for behaviour include:

  • Pain, discomfort or feeling unwell
  • Loneliness and lack of social contact
  • Boredom and/or inactivity
  • Sensory deprivation
  • Depression
  • Fear
  • Response to delusions/hallucinations
  • Environmental regression: a sudden change in daily routine (house re-modelling, favourite chair moved), which creates great stress and anxiety
  • Sundowning: people with dementia may become more confused, restless, upset, suspicious late in the afternoon/early evening. Whilst no one is sure what causes sundowning, it seems to result from changes that are occurring in the brain and may relate to sleep disruption or lack of sensory stimulation after dark.

For the person with dementia, the inability to express clearly what is happening is both terrifying and confusing, therefore, it is important to try to understand why the person with dementia is behaving this way.

If you can determine what may be triggering the behaviour — personal care, soiled clothing — it may be easier to figure out ways to manage the behaviour. Any behaviour changes and the impact on caregiver/family should always be discussed with your doctor.

For the more challenging behaviours, medications may be prescribed, however, these medications do have side effects with negative consequences e.g. increased drowsiness, increased falls risk, and their long-term use is generally not encouraged.

Before you reach for medications, ask yourself whether the person with dementia is:

  • Tired
  • Hungry or thirsty
  • In pain or appears uncomfortable (constipated)
  • Frustrated or looking for something e.g. glasses, hearing aide
  • Reacting to a change in the environment e.g. noise, unfamiliar place
  • Trying to tell you something
  • Needs to go to the washroom or is incontinent
  • Upset
  • Bored
  • Having a reaction to medication, or if diabetic, blood sugar low/high
  • Experiencing delirium

Interventions that might help:

  • Take a deep breath and remain calm
  • Do not shout, grab at, argue with, or correct person with dementia
  • Position self below person’s eye level (avoid staring at or looking down on person)
  • Turn up lights
  • Reduce stimulation: turn off TV, radio
  • Offer food, fluids
  • Ensure person with dementia has glasses, mobility aide, hearing aide
  • Assist with toilet/personal care (if able too)
  • Try aromatherapy e.g. lavender oil
  • Massage shoulders, light strokes to face/hands, place your hand under person’s hand (helps give person with dementia a sense of control, is less threatening, and promotes sense of trust)
  • Distract person: look at photographs, play a game, make a cup of tea
  • Go for a walk or sit in garden
  • Offer reassurance and validate feelings. Validation is not lying, consider it avoiding or challenging person with dementia’s reality, do not correct his/her beliefs, but instead, just be with them in the moment

Managing changed behaviours can be very difficult, and is often a matter of trial and error. Some days, it may feel as if everything the caregiver does to help the person is ineffective.

If the person is safe, the best thing to do is to leave him/her alone; take a deep breath and go for a short walk, call a friend, neighbour, family, your doctor, or the First Link dementia helpline at 1-800-936-6033 for support and help.

If behaviours become worse and the person becomes unmanageable, or appears at risk of harming self or others; call 911 immediately.

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About the Author

Tracey Maxfield, RN, BSN, GNC(c), DDS, is a dementia educator, consultant and advocate with over 35 years working with dementia populations in the U.K. and Canada.

She has worked in a variety of heath-care settings: acute care, palliative care, community care, residential care, physicians offices and community health centres.

Tracey has appeared on the U.S. radio shows Caregivers With Hope and Alzheimer’s Speaks, and has a dementia column in an on-line medical and holistic magazine, The Scrutinizer. 

She is a the Purple Angel Dementia Ambassador for the Central Okanagan, and sits on the board of directors for Seniors Outreach Society, and is a committee member of the Better At Home program.

She can be reached at [email protected].

The views expressed are strictly those of the author and not necessarily those of Castanet. Castanet does not warrant the contents.

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