The American Psychological Association defines personality as “individual differences in characteristic patterns of thinking, feeling and behaving.” Our personality evolves and develops along our lifespan. More drastic changes in personality sometimes accompany dementia. These dementia personality changes can be unexpected for both the person living with dementia and those that love them.
What is Dementia?
“Dementia is a group of syndromes or conditions where the symptoms must be seen and supported as cognitive dis-Abilities.” - Kate Swaffer, Dementia Alliance International, Advocate Living with Dementia
When one is given a diagnosis of dementia, it means the way they think or their cognition has changed in at least two of the following six ways:
- Complex Attention. Our ability to stay focused, pay attention and multitask.
- Executive Functioning. Our ability to plan, organize and make decisions.
- Memory. Our ability to retain information and remember things in the short and long-term.
- Language. Our ability to find the words we want to use for a given concept and to understand words when spoken to us.
- Perceptual Motor. Our ability to understand what we see and translate it into meaningful information.
- Social-Cognition. Our ability to understand and express emotions.
Dementia is an umbrella term that covers lots of different types of cognitive change. There are over ten types of dementia and they are named for their suspected cause. For example, Alzheimer’s disease is a type of dementia named after the doctor that found the plaques and tangles thought to be its cause.
What Are Dementia Personality Changes?
In the medical world, there is a list of Behavioral and Psychological Symptoms of Dementia (BPSD). It is a mixture of these that can add to the feeling of a personality change with dementia. As a word of caution, myself and others in the field reject these as the medicalization of feelings. I outline them here because you will see and hear them in other places. I have also offered less stigmatizing alternative language. Before applying them to your loved one, note how many you have experienced or expressed, even in fleeting ways, in your own life. The BPSD include:
- Aggressive & Threatening Behavior. Expressing an unmet need such as pain, boredom or frustration.
- Anxiety. Worry and fear.
- Apathy. A lack of desire to do something.
- Delirium, Delusions & Hallucinations. An expression of a personal reality.
- Restriction of drive and energy.
- Impulsive or Disinhibited Behavior. A unique or otherwise freer expression of oneself.
- Perseverative or Compulsive Behavior. A desire or urge to do something again and again.
- Sleep Disruptions. Having a hard time sleeping.
- Wandering. A desire to search, move and explore.
This video beautifully demonstrates how we judge those living with and without dementia’s behavior differently:
I have worked with people full of energy and rage who seemingly overnight become calm and kind. I have worked with people who are quiet and shy and emerge as boisterous and extroverted. Did they forget some past trauma? Did something neurologically change? We do not yet know for sure.
The truth is with or without dementia, we all experience some or all of the above throughout our lifetime. Dementia behavior changes and personality changes may just happen quicker than before or seem less predictable.
What Causes Dementia Personality Changes?
We do not fully understand dementia personality changes. However, much of what we do understand falls into five categories:
- Brain changes. Damage to certain parts of the brain correlates with changes in the parts of life it controls. Here are all of the different parts of the brain and what they are responsible for:
- Frontal Lobe: Thinking, memory, behavior and movement. Changes here and in the temporal lobe are linked to Frontal Temporal Dementia.
- Temporal Lobe: Hearing, learning and feeling.
- Brain Stem: Breathing, heart rate and temperature.
- Parietal Lobe: Language and touch.
- Occipital Lobe:
- Cerebellum: Balance and coordination.
- Body changes. Changes in personality may actually be manifestations of changes in your loved one’s physical body.
- Infection: Certain infections such as UTIs can cause hallucinations and delusions.
- Pain: When verbal communication is not available pain can be expressed through personality changes sometimes mislabeled as aggression and agitation.
- Medication: Certain medications can cause personality changes, so talk with your doctor or pharmacist to learn more about side effects.
- Perception changes. According to the Alzheimer’s Society in the UK, “these behaviours usually happen when the person is feeling confused or distressed and trying to make sense of what is happening, or when they are trying to communicate that they need something. Looking at the causes of the behaviour and identifying the person’s needs can help to reduce them or make them easier to manage.”
- Social changes and stigma. Many self-advocates living with dementia report one of the hardest things about the diagnosis is that people treat you differently. They report that some of the dementia personality changes are not from dementia itself, but society's reaction to it.
For example, Dr. Richard Taylor expressed that “many think it is the disease that causes us to withdraw, and to some extent, I believe this is true. But, for many of us, we withdraw because we are not provided with meaningful opportunities that allow us to continue to experience joy, purpose, and engagement in life.”
Similarly, someone once said, “people didn’t know how to talk to me even though I was the same person I was five minutes before I told them I had it. They just saw this big A on my forehead. They didn’t look at me as the same person – I was stupid, or couldn’t carry a conversation, or have a single thought of my own, which was very distressing to me.”
- Psychological changes. Throughout our lifetime we are growing and changing. Our personality is developing. There are parts of us that we can see the seeds of from our earliest days. Other parts of our personality are reactions to our experiences in life.
This does not change with the diagnosis of dementia. The experience of getting diagnosed with dementia and the associated changes is a major life event for most people. Experiencing depression and anxiety often accompany a diagnosis of dementia.
Our culture has not yet developed sufficient ways to support and include those living with dementia. This coupled with the changes associated with it can be very anxiety and depression inducing.
Strategies for Understanding Dementia Personality Changes
Now that we understand as much as we can about the causes of dementia personality changes, what can we do about it? There are four steps to take when you notice dementia personality changes in your loved one. Decrease suffering and increase the quality of life for you both by making sure to:
Check for Unmet Needs
According to the Alzheimer’s Society in the UK, “when a person with dementia starts to behave in ways that seem out of character, some people wrongly assume this is just another symptom of the condition.” Try checking for these unmet needs instead:
- Are there any infections present?
- Are there medication side effects that could be causing the change?
- Try calming agitation from dementia by checking if the person is in pain or discomfort.
- Social. Isolation can be a big challenge for people with dementia, their loved ones and family members.
- How have social structures changed since diagnosis?
- What can you do to support a robust and supportive community?
- Emotional and psychological. We all have basic emotional and psychological needs. Unfortunately, our current society is not set up to provide support for those needs throughout our lifespan.
The Eden Alternative outlines domains of wellbeing necessary for us all. Do a quick check-in with yourself and see how you are doing in these domains, and then check-in with your loved one. Is there an unmet need in one or more of these domains that could be at the root of their personality change?
- Identity: Being well-known, having personhood, individuality, having a history.
- Growth: Development, enrichment, expanding, evolving.
- Autonomy: Liberty, self-determination, choice, freedom.
- Security: Freedom from doubt, anxiety, or fear, safety, privacy, dignity, respect.
- Connectedness: belonging, engaged, involved, connected to time, place, and nature.
- Meaning: Significance, heart, hope, value, purpose, sacredness.
- Joy: Happiness, pleasure, delight, contentment, enjoyment.
Once you have uncovered the potential unmet needs, get creative about ways to meet those needs. For example, many people I worked with in long term care would become what would be labeled as ‘agitated’ or ‘aggressive.’ The solution was often that a daily ritual had been forgotten in the transition from living at home to a facility. Once this ritual was back in place the personality change shifted. This is where we start to see if the change in personality is trying to communicate an unmet need.
Check for a Trigger
The University of San Francisco’s Memory and Aging Center has an acronym for checking if something in the environment is triggering the change in personality and behavior, DICE:
- D: Describe what Happens.
- I: Investigate Possible Causes.
- C: Create a Plan.
- E: Evaluate the Plan.
Ask Yourself if the Change is Harmful
Once you have looked for communication of unmet needs and triggers, you will be left with dementia personality changes that are happening for an unknown reason. This is likely some combination of those addressed above.
Across the lifespan, it is distressing to see someone we love experience personality change. How many parents have lamented where their sweet child has gone when an angsty rebellious teen takes their place? This phenomenon is exacerbated in the context of dementia due to our lack of social stories and structures to hold these changes.
Acknowledge your feelings and be compassionate with yourself. It is hard to see someone we love change, especially if we do not like the change. Ask yourself if the change is harmful and hazardous to them or people around them. If the answer is no then the work is learning to love who is present, not who they used to be. For example, using Validation Theory with dementia when a delusion is harmless can be a good way to affirm your loved one’s reality.
If the answer is yes, then start to explore how you can support them to make the personality shifts less harmful. Are there changes that can be made to the environment or are their psychological or social services that can help?
Create a Support System
Surround yourself and your loved one with people to support you by:
- Holding onto and making friends who will treat you with kindness and acceptance.
- Getting professional help to reduce the stress of providing care.
- Checking out organizations such as Dementia Action Alliance and Dementia Friends to find support and make your community more dementia inclusive.
There is a push to add testing to look for these changes sooner and diagnose them. This new testing is looking for what is being called Mild Behavioral Impairment. The hope is to be able to detect dementia earlier.
This kind of testing, however, is a slippery slope into a future where we are not allowed to grow and change. And what of the heightened anxiety due to the massive stigma that comes with a diagnosis? The earlier we diagnose, the longer one has to live with the stigma and without a cure.