Dementia and responsive behaviours: it’s not personal
Are any of the following interactions and thoughts familiar to you?
“Why is Dad upset all the time?… he was never like that before.”
“What’s going on with Mom? …she doesn’t want to go anywhere with me. ”
“Dad accused me of stealing. I feel awful! I’d never take anything from him!”
If yes, you are not alone! They are common experiences and questions for daughters and sons of a parent with dementia. They are reactions to behavioural changes that can occur with a dementia diagnosis.
Dementia and responsive behaviours
Behaviour in general is described as a way we act or conduct ourselves, especially with others. We all have behaviours and things that trigger us. With dementia it is no different. A parent with dementia experiences actions, words and gestures that are a response to their personal, social and physical environment. Their behaviour is trying to tell us something important– this behaviour is referred to as a responsive behaviour.
The person with dementia is not intentionally trying to behave poorly. And it is not personal. That is, they aren’t trying to upset you and they aren’t deliberately attacking your character by accusing you of stealing for example. They have damage to the brain caused by the dementia and this changes their ability to understand the world. They see, hear and interpret things differently and have difficulty expressing their needs. This is really important to know because it can help you deal with these behaviours if and when they occur.
Understanding what triggers your parent’s behaviour
As an adult child you can practice tuning in to your parent’s triggers and learn more about how they communicate with you through their behaviour. The P.I.E.C.E.S framework, which is an acronym for: Physical, Intellectual ,Emotional, Capabilities, Environment and Social can be really helpful to understand what may be triggering the behavior. Consider the following questions for each trigger:
Physical – Are Mom’s basic needs met? Is she in discomfort or pain? What changes in her physical condition do you notice? (eating, energy level)
Intellectual – Has Dad experienced recent changes in his memory? Has he been showing impulsive behaviour (swearing, quick to anger)? Is he struggling with speech (word finding) or sequenced tasks (getting dressed, driving, preparing a meal)?
Emotional – Have you observed increased depression or anxiety in your parent? Does Dad seem lonely? Is he isolating himself? Has he exhibited any new unusual behaviours (suspiciousness, blaming others)?
Capabilities – Can your Mom do more than you realize but you do not allow her to? Does Dad even comprehend that he may need help?
Environment – Is there too much noise or too large of a crowd around your parent? Is the lighting poor, making it hard for him to get around? Is there enough or too much stimulation? Check yourself: what energy are you bringing to the situation? (exhaustion, resentment, frustration, anxiety). What are you doing or not doing that may be contributing to their behaviour?
Social – What do you know about your parent’s early years, adulthood or employment experiences? What insights do their culture, religion or set of values offer?
Understanding these responsive behaviours and triggers may help make your caregiving and time spent with your parent less stressful. With practice you can meet such challenges one day at a time by being creative and patient.
If your parent has dementia, what have you learned about their triggers?
I have FTD (Frontaltemperal Dementia.).
This article was very insightful and helpful in my interactions with my mom !
This helps me to understand how I can help her in this journey and I realize that I need to learn more about dementia as this disease progresses ! Thank you !
I dont understand dementia
Many of the behavioural issues you noted are my fathers issues.
I enjoyed your article brought me insight into whats going on and gave me some idea of how I need to change to accomode his needs
Thank you
I think I may have some of the symptoms of pre- dementia and would like more information , as such as newsletter support. Thank you
Also, there are many causes of dementia
– Caused by stroke
– Caused by Alzheimer’s (a disease)
– Caused by by idiopathic Normal Pressure Hydrocephalus
The latter is of great interest to me, as it is what I suffered from (note past tense suffered) and is curable, while the others are not. I wrote a book on the difficulties in diagnosing NPH and the tremendously successful surgery to cure, called “Drunk Grandma Walking”. If more people were aware of this successful surgery there would be far fewer people in nursing homes requiring care for their dementia.
My Mother 84 has just been diagnosed with dementia and I’m told she is in stage 4 and that their are 7 stages. Can you fill me in on what I need to know so I can make this A little bit easier for her
Hi Brenda,
Here is a comprehensive answer to your question from our dementia expert, Brenda Davie:
First of all Brenda, it’s never easy to hear the news about a parent being diagnosed with dementia. Becoming familiar with the stages of dementia may help you better understand the changes your Mom is experiencing.
There are different stages used to describe cognitive changes over the course of the disease. Using stages helps health care professionals and caregivers track the disease’s progression and measure symptoms that may direct interventions and care choices.
Some caregivers like the general three-stage model that loosely offers information about the progression of the disease. These stages are described as early, middle, and late stage OR mild, moderate, and severe stage.
Other caregivers prefer more detailed and structured information to better understand the progression over time. The most common measuring tool is called the Global Deterioration Scale (GDS) developed by Dr. Barry Reisberg.
And this is where the seven stages come in. The GDS provide caregivers an overview of the cognitive changes outlined through seven stages. For example, Stage 4 of the GDS describes Mom’s level of abilities and changes related to middle (or moderate stage) symptoms of dementia.
It is important to note that dementia affects everyone differently and that stages are not set in stone; they are a guide. Stages vary from person to person and the symptoms of each stage may overlap, often the move from one stage to another is subtle and may even go unnoticed.
No matter what stage of the disease the person is experiencing, getting information and support are important to living with the disease.