Published on: January 25, 2017
by Women’s Brain Health Initiative:
Relationships between mothers and adult children can be challenging on the best of days, but when a mother gets dementia, that relationship can become downright difficult. In part, because of the well-known cognitive symptoms of dementia like memory lapses, repetition and confusion. But also because of additional symptoms of dementia that are quite common and even harder to handle, collectively referred to by health professionals as BPSD (behavioural and psychological symptoms of dementia).
For someone with dementia, changes happening in the brain impact not just their cognition, but also their personality, behaviour, and emotions.
Imagine yourself as the adult caregiver in the real-life scenarios on the next page that illustrate a couple of the common behavioural and psychological symptoms of dementia. What would you do?
1. Mom is in the early to mid-stage of Alzheimer’s disease and she still lives at home. Over time it becomes clear that she is no longer cleaning her house at all, despite having been quite fastidious before. The dust is thick on every surface, the bathroom is filthy and the carpet is covered with bits of food and cat hair. You explain to her that she needs some help with cleaning and offer to hire a cleaning person. She adamantly refuses, insisting that she is perfectly capable of cleaning her own house. She is so insistent that you drop the subject for that day, deciding you’ll see if she does take any action on her own. When you return in a few days and the house looks the same, you bring up the need for a cleaning person again. Your mom proudly takes you into the kitchen to point out that she has dusted the top of the upper cabinets, explaining she did it all on her own, climbing up on a chair then the counter so that she could reach. She is convinced that this display of independence will convince you that she is right, she is perfectly capable of cleaning her own house and is doing a great job of it.
2. Mom is in the late stages of Alzheimer’s and has to be taken to the hospital after a minor fall. As the two of you sit in the busy waiting room, she begins taking off her clothes. When you ask her to stop, she appears to not hear you so you start physically trying to prevent her from disrobing. This makes her angry and more determined to take it all off, and it turns into an escalating struggle, with your mother lashing out both physically and verbally (shouting and swearing).
Historically, the behavioural and psychological symptoms of dementia were referred to as challenging, difficult, negative, excessive, disruptive, problematic, disturbing or inappropriate. While this negative terminology may accurately describe the behaviours from the caregiver’s point of view, researchers and health professionals now prefer the term “responsive behaviours” which is a more neutral, person-centered term, emphasizing the fact that most of the behaviours occur in response to something, an unmet need or a trigger.Other examples of BPSD include: agitation, delusions and hallucinations, pacing, cursing, throwing things, speaking without a filter (e.g., telling people their breath stinks), and other socially inappropriate behaviours, such as theft and public masturbation.
“Responsive behaviours can be the most challenging part of any type of dementia to deal with as a caregiver and can often lead to placement in a facility outside of the home,” said Dr. Carol Ward, a geriatric psychiatrist with Acute Tertiary Mental Health, Interior Health Authority of BC and Clinical Assistant Professor at the University of British Columbia.
Tips to help you navigate challenging times with someone who has dementia:
Imagine “Walking a Mile in Her Shoes”
Your mother’s alarming behaviour may be stressing you out, but remember, whatever is happening is distressing for your mom, too. Try to imagine the world from her perspective. The dementia-induced damage to her brain has changed her ability to make sense of the world around her. She is seeing and hearing things differently, interpreting things incorrectly, and having trouble communicating her needs. She is losing her sense of who she is as a person, is struggling to remember people and places she once knew, and is having difficulty with tasks that were once routine. She may even have anosognosia, a common consequence of dementia that leaves people unaware their functioning is compromised. Your mother may not even realize she is ill, so she’s wondering why others keep telling her what to do. How would these experiences make you feel? Probably scared, confused, angry, and vulnerable.
Alzheimer’s Research UK has developed an Android-exclusive app that, according to their website walkthroughdementia.org, puts you “in the shoes of someone living with dementia.” It depicts three everyday situations, using virtual reality, to help convey what everyday life can be like for a person with dementia.
Stopping to consider dementia from your mother’s perspective will surely help you have more empathy, compassion, and patience.
Don’t Take Her Behaviour Personally
To help you deal with your mother’s responsive behaviours, it is key to remind yourself that the effects of dementia are beyond her control. She is not deliberately being difficult or mean. As Dr. Ward put it, a person with dementia is “not intentionally being obstinate or trying to get your goat.”
Try to Decode Her Needs & Uncover Her Triggers
See all the behaviours your mother displays as her best effort to communicate something. Consider it your job as a caregiver, with assistance from your mother’s healthcare team, to decode the needs she is trying to express and notice what situations or environments trigger any responsive behaviour.
Is your mother in pain, dehydrated, or having trouble sleeping? Is she upset about being moved to a nursing home? Is she having trouble focusing in a cluttered or noisy environment? Is she forgetting how to do simple everyday activities like eat and get dressed? Is she resistant to receiving assistance with bathing?
Watch for patterns. Are certain times of the day more challenging than others? Do certain activities elicit regular resistance, e.g., bathing? Common triggers include too much sensory stimulation, being rushed, and being given too many instructions all at once.
There are many resources available online that can help you discern what your mother is trying to communicate, and explore what you can do to best help her. For example, The Alzheimer Society of Ontario offers an online tool, The U-First! Wheel, at u-first.ca/why-u-first-2/u-first-wheel. This easy-to-use tool will help you learn about potential causes and triggers for BPSD and plan for optimal care based on understanding what’s behind your mother’s behaviours. It takes you through six areas that are part of the PIECES model (physical, intellectual, emotional, capabilities, environment, and social). There’s even an app designed by University of New South Wales called BPSD Guide that can help you understand BSPD and suggest interventions that might help you in dealing with those symptoms.
Devise a Customized Care Plan
Once you’ve identified the underlying causes and triggers of your mother’s responsive behaviours, you can experiment with different caregiving strategies until you uncover what works.
Dr. Ward shared an example of effective, customized care in response to a common trigger. She explained, “People with late Alzheimer’s disease need regular help going to the bathroom but this type of intimate care is a common trigger. They do not understand or appreciate why someone is trying to help and so they resist or even get angry. Caregivers will use different strategies to help distract in the moment. Understanding each person is key because what works for one person may not work for the next. Some caregivers will sing a song they know the person likes, and even encourage the person to sing along during the task. Another successful technique is putting pictures in the bathroom that the person with dementia connects with, using them as tools to distract while care is being done.”
In addition to techniques for distracting as described in the example, a care plan for addressing responsive behaviours might also include: creating a calm environment (e.g., by reducing noise, clutter and shadowy lighting, perhaps playing soft music and using soothing aromatherapy oils to scent the air), maintaining routines to provide predictable structure, allowing lots of time so the person doesn’t feel rushed, reducing caffeine and sugar intake, placing dangerous objects out of reach, introducing activities to relieve boredom and increasing physical exercise.
Keep in mind that what works one day may not work the next. Your mother’s symptoms and needs will change over time as the disease progresses, and so your caregiving strategies will need to evolve too.
Focus on Your Behaviour
In a situation where everything might feel out of control, learn to focus on what is within your power to change: your own behaviour.
Check your attitude before interacting. Before entering the room or initiating an interaction, pause for a few deep breaths to slow yourself right down and get centered. Entering in a calm state of mind will help set a positive tone. Take your time and engage in some social interaction before getting right into administering any care activities.
How you communicate is key. Dr. Ward explains that “the reaction you elicit from a person with dementia is heavily influenced by your facial expression, tone of voice and body language.” These are more important than the words you speak so be sure to smile, make eye contact and provide a reassuring touch to help get your message across while at the same time showing love and compassion.
According to the Best Practice Guideline for Accommodating and Managing Behavioural and Psychological Symptoms of Dementia in Residential Care by BC’s Ministry of Health, “verbal and non-verbal communication techniques such as speaking at eye level, approaching from the front and communicating in a clear, empathetic adult tone of voice have demonstrated effectiveness in preventing and managing some behaviours.”
Don’t argue about what’s true. If your mom is saying things you know are false, consider just going along with it or asking questions to better understand her perspective. Resist the temptation to correct her or argue about what is actually true. Ask yourself, in the end, what does it really matter if mom doesn’t remember what is actually true. If it won’t hurt her, she doesn’t need to be contradicted. Think of how accepting we are with young children’s imaginative alternate views of the world, and how there is no harm in that.
Take a time out if you need to. If things are getting heated and you can’t divert your Mom’s attention to something else, back away or even step into another room (if it is safe to do so) to cool down.
Learn to Let Go
Before responding in any given situation, ask yourself if the behaviour is truly a problem. Dr. Ward suggests you, “stop, reflect and breathe. Think about safety, theirs and yours.” Many behaviours may be embarrassing or uncomfortable to be around, but may not actually be hurting anyone, and in cases like that, learn to let things go. “Does it matter in the moment if the person with dementia goes into the bedroom and puts on three shirts and one is on backwards? Maybe not,” continues Dr. Ward. Consider how to possibly anticipate and plan for the behaviour in the future (such as laying out clothes, limiting choices or access to clothing, in this example). Avoid intervening or correcting unless it is necessary to protect your loved one from harm. Allow the person with dementia to have as much choice and control as is safely possible.
Source: Mind Over Matter
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