Coping with dementia behaviours at home- Caregivers Guide

If you’re sleeping with one eye open, being vigilant at all hours for the tell tale signs and feeling at a tipping point because your loved ones’ dementia behaviours are challenging you, you’re are not alone.

That’s why this article is designed to help:

Shares an individualised or personalised approach to cope with dementia behaviours
Helps you reclaim quality of life with simple framework to understand and manage
Introduces the 5 +1 framework for Caregivers and Health professionals to help overcome behavioural changes

This article covers the common questions about how to better cope with challenging behaviours associated with dementia.

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You see at least 1 in every 2 people living with dementia will experience behaviour and psychological symptoms of dementia. In some situations it’s reported that up to 96% of people with dementia may demonstrate behavioural symptoms.

In order to cope with these behaviours, caregivers no doubt need to be as prepared as possible. Yet, saying this, can get in the way of acknowledging how challenging life can be as we’ve see it far too often in our dementia assessment service.

By no means, are we suggesting for one second, that meeting these changes in your loved will be easy. It takes courage, compassion and effort. The other ingredient is also having the right team to help – your support and that’s what this article shares with you.

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Behaviour changes associated with dementia no doubt can have a profound impact on a person’s life. We’ll often see an increase in the care burden and an erosion in quality of life for all involved.

In 2012 the World Health Organisation set the alarm, a tripling of dementia worldwide by 2050 with almost 115 million people living with dementia.

Much of the care and support for people happens by loved ones, and arguably, it’s expected that there will be half a billion carers, by 2050 and it’s those memory warriors that this article is for.

ARE YOU AT A TIPPING POINT?

Aside from the changes in a person’s quality of life, the carer burden and stress associated with behavioural and psychological changes has a marked impact on caregiver’s mental health (Arthur et al, 2018).

The tipping point for carer distress is thought to be linked to increasing numbers of behavioural symptoms.

In our experience we also observe those carers at risk with behaviours which are intrusive, frequent, persistent and disrupt the health and mental health sustaining routines. You see many caregivers make adjustments to their lives such as

Less exercise
Less sleep
Greater thinking efforts as they’re constantly considering the needs of another person
Skipping, making shortcuts on healthy nutrition
Less socialising with others

In addition to causing distress to loved ones, these behaviours can make it difficult for caregivers to provide care to the affected person. Caregivers commonly report feeling frustrated, angry, guilty, helpless, embarrassed, or worried about how their loved one behaves.

Clearly, there’s a lot going on.

What Can Carers Do About Challenging Behaviours

In short, identify and responding to the behaviour changes sooner, rather than later is likely to help sustain and improve quality of life all round.

The question is, how do you get there?

A promising dementia behaviour strategy has gained greater evidence backing for its effectiveness and is now helping families, loved ones and healthcare professionals to have improved outcomes.

The starting point is to improve our understanding of what are the factors causing this distressing change in our loved ones.

Dementia refers to a group of symptoms caused by diseases affecting the brain. Lewy Body, Frontotemporal and Chronic Traumatic Encephalopathy (CTE) are specific disorders which often experience behavioural changes.

HOW COMMON ARE BEHAVIOUR CHANGES IN DEMENTIA?

Behavioural and Psychological Symptoms of Dementia or shortened to (BPSD) is likely to affect most people living with dementia throughout the course of the disease. Depending on the type of dementia anywhere from 56% – 96% of people will experience behavioural symptoms at varying stages of dementia.

WHAT ARE THE COMMON DEMENTIA BEHAVIOUR SYMPTOMS

Behavioural symptoms vary depending on which form of dementia is present. For example, Alzheimer’s patients may experience depression and agitation whilst people who experience vascular dementia may experience wandering.

Some dementia behaviour patterns are similar across the board; for example, people living with Alzheimer’s or Frontotemporal dementia patients may exhibit repetitive actions or ritualistic behaviours.

But symptoms and severity can change over time. In saying that, some forms of wandering may be more persistent over the course of the person’s life.

The most common behaviour associated with dementia is apathy, which is defined as lack of motivation or interest in activities. Other common behaviours include disinhibition, agitation, depression, sleep disturbance, wandering, and hallucinations.

The most commonly reported BPSD are

Apathy, depression, anxiety and agitation
and less common are delusions, hallucinations, sexual or social disinhibition, sleep–wake cycle disturbances, aggression,

Source: Tible et al, 2017

WHAT ARE THE CHALLENGING BEHAVIOURS OF DEMENTIA FOR CAREGIVERS?

According to a paper published by Feast and colleagues (2018)

Aggressive behaviour, agitation, repeated calls for attention, sleep disturbance, restlessness, and apathy affect up 90 percent of people with Alzheimer’s disease. These behaviours are associated with poorer outcomes including distress in both the patient and caregiver.

Here’s How You Can Observe These Behaviours: 5 Clusters

Common behavioural symptoms can be grouped and observed as clusters– that is, a person with dementia may demonstrate

Affective: This refers to the underlying feeling or mood. Elation, anxiety, irritability for example.
Psychotic: Where a person loses touch with reality. This may involve delusions or hallucinations.
Hyperactive: This refers to the constant activity of the person. You may see this as pacing, restless, repetitive behaviour or wandering. Sleeplessness or disrupted sleep patterns can also be a major behaviour at home.
Apathetic: This is observed as lacking motivation, zest or drive to do or initiate an activity.
Aggressive Behaviour / Agitation*: This may be noticed either as physical, verbal or both.

WHY DO THE BEHAVIOURS HAPPEN?

Let’s not stray away from the issue that confronts most people, including health professionals, and that’s “it’s complex”. BUT, let’s work through this common stumbling block.

We’ve so far established that symptoms can vary and they can be severe to mild
The behaviours can be viewed from the 5 clusters perspective.

Agitation, disinhibition, and psychosis from BPSD are associated with

Brain volume reduction and
Reduced metabolism in key areas of the brain. This is noted as dorsolateral prefrontal cortex, orbital prefrontal cortex, anterior cingulate, insula, and temporal lobes according to Alves and colleagues 2017

So with that said, the causes are manifold and likely to include an interplay of:

Personal Factors: in short what is happen as a result of the disease process inside the person’s brain associated with the the type of dementia (biology). Cognitive impairment , memory loss and changes in perception for example. As well as the medications and other health issues, pain, unmet needs and personality for example.
Psychological changes: These relates to the change in the mental resources of a person to detect, process and respond to the world. Your brain is a dynamic organ that interprets signals about the world and reacts to these signals. A break down in receiving, understanding or act can be part of the behavioural puzzle.
Environmental factors: The room, caregiver actions, caregiver distress, ambient factors temperature, lighting, noise.

You’d appreciate there are some that are fixed and there are others that can be changed or modified.

Let’s take John for example.

John experienced agitation regularly in the afternoon and would routinely not want to cross from the carpet to the linoleum floor in order to get to the front door.

He’d literally come to a stop at the line between carpet and linoleum and extend a foot out to tap it and then reach for the wall. He genuinely appeared anxious and would pull back from his wife if she tried to help.

This caused his wife no end of frustration as the afternoon walk was a positive ritual for their relationship and John really enjoyed it as well.

You see for John, the stage of his Alzheimer’s type disease (biology), the changes he would often experience psychologically would be to confuse objects or retrieve the wrong one. The environment factors of light and floor surfaces also appeared to make it harder for John to do his usual routine

I suspected that John was having difficulty with visual perception and we tested a hall runner with improved ceiling lighting.

The result, his afternoon mobility performance improved out of sight, hi s agitation was less and he was more consistent with his afternoon walks.

So you could say the solution here was environmental.

TO GET TO THE RIGHT BEHAVIOUR SOLUTION HERE’S 3 FACTORS OF A ROBUST ASSESSMENT SHOULD

So we’ve established there are many causes and associated factors that can divided into personal, psychological and environment.

You now also appreciate some factor you can change or modify whilst other factors are fixed and can’t be changed like the disease type for example.

So, it stands to reason, we should check off these 3 areas so you can have a solid understanding of what may be adding up to the behaviour and zero in on those things that can be modified.

1. THE PERSON

Health: an infection can impact a person’s behaviour, especially a urinary tract infection, as well constipation or pain.
Medication Changes: has there been an adjustments to medication, is the person consistent with their medication?
Sensory or Perception changes: Any changes to vision and hearing? A person may also have difficulty perceiving their environment. This may affect their ability to use or approach objects. For example, you may notice a different way a person approaches a couch or chair in order to sit in it. In John’s experience, there was likely a visual perception change that affected his ability to cross over two surfaces.
Nutrition: Inconsistent fluid and food intakes can impact a person

2. MENTAL/ PSYCHOLOGICAL

Is there an unmet need? Tired, anxious, bored, lonely. What is the person doing during their day, Are they able to do the activities which matter to them? If so, are the safe, successful, comfortable with these tasks?
Is there an underlying mental health issue?

3. The Task And Environment

How distressed / stressed is the caregiver? Does a person’s behaviour place you at risk or triggers intrusive or trauma related memories.
Is there a potential of confusion about a person’s behaviour ”they do this always, they are being naughty”….
What is the task and situation when the behaviour occurs? If we take John’s experience there was the time of day, What’s happening before the behaviour occurred.
Is the environment too busy or too overwhelming? Noise, clutter, many people speaking, distractions for example where a person’s ability to self manage these stressors are reduced.
Is there a lack of predictability or stability of routine.
Is the environment lacking in stimulation? Lighting, activities, spaces or is socially isolating.
Does the environment help prompt a behaviour? The number of times we attended to continence issues in a home because the toilet door was closed and so not visually accessible.
Do the activities that person needs to do too hard and aren’t matched to their current strengths?

WHAT YOU CAN DO – SIGNS TO WATCH OUT FOR AS A CAREGIVER

In a large scale systematic review of the literature Feast and colleagues (2018) explored

How does behavioural changes in a loved one with dementia impact the caregiver and family

Their findings suggest that we need to pay attention to our language, feelings of and response to

“Challenging Behaviour”– an indicator of your stress may be first identifying and labelling a behaviour as challenging
Being Bereft or Isolated – caregivers shared that not being able to talk with your loved one or communicate in any way that is at all meaningful or usual is the most distressing part of it”
Emotional distancing from a loved one
Expecting better performance in person living with dementia than what happens ” The constant barrage of questions, the same questions, gets on my nerves and is super stressful. He’s not remembering anything his memory loss is so bad” According to Feast’s paper, misunderstanding of a person’s behaviour can foster strong beliefs in the caregiver and affect their response.
Loss of life opportunities -feelings of frustration and loss at not being able to do the activities or experience that you planned for.

If the health care providers or primary supports don’t attend to this, these experiences are common risk factors for greater behaviours of concern, as well as, break down in quality of life and premature placement into residential care.

5 +1 ASPECTS OF SUCCESSFUL CAREGIVING AT HOME

No doubt every home, every person is different and that makes it hard to be crystal clear with the evidence of what works and doesn’t work.

What has become more evident is that action is needed in the home and needs to tackle 5 key areas. The STAR -C program developed by the University of Washington demonstrated positive effect on caregivers.

The program focuses on connecting and accessing activities that are fun. This particular aspect of the program is thought to help with adjusting to the changed life circumstances and may moderate the sense of ‘feeling bereft’ mentioned earlier in this article.

A multi pronged approach to helping the caregiver cope with the behavioural and psychological support needs of a person living with dementia in the home needs to consider these 5 + 1 Areas.

Build your understanding of dementia and the specific types of diseases that fall under it’s umbrella, like, Alzheimer’s Disease
Identify and reduce behavioural problems ( The 3 factors)
Your words matter, so learning, practicing and being consistent with communication skills can have a positive effect
Invest and access more pleasant events as there is a strong relationship between mood and meaningful activities
Be sure to have a team of people around you for love, solidarity, support and joy. The Plus 1 here, is to consider your emotional and psychological support and Cognitive Behaviour Therapy has been noted to be effective.