Living well, with joy, peace, a sense of security and quality of life, is a goal for all of us. This is true whether we are free from illness or if we are living with conditions such as dementia or mental illness. And one’s ability to “live well” is very much related to emotional health. Unfortunately, those with dementia are often living in poor mental health and I think it is something important for us to understand with the hope that we can help.
Dementia is not a diagnosis in and of itself. Dementia refers to a group of symptoms including changes in thinking, reasoning, and memory, that are so severe they impact a person’s level of function and safety. There are many conditions that cause dementia, with the most common in the elderly being Alzheimer’s disease, vascular dementia, Lewy body dementia, and frontotemporal dementia. Each will have some degree of impact on cognition, communication and function. And all types of dementia will often lead to some level of behavior disturbance and personality changes.
Because of changes in cognition and the inability to engage in life independently, a person living with dementia is very vulnerable to stress and likely to experience distress which significantly impacts their mental health and emotional well-being. This is very common and there is a direct causative relationship of inadequate dementia care and distress behaviors. Distress behaviors are a clear sign of a person’s eroding mental health. Managing distress behavior to facilitate better mental health is something we can help with so we will explore this in a big way here in this blog.
It’s important to also understand mental illness and dementia. As previously stated, dementia can affect mental health and it can be considered a mental disorder, but it is not a mental illness. A person living with dementia may also have a comorbid mental illness such as major depression or anxiety disorders. Dementia and mental illness are independent diagnoses, but they can occur together for various reasons.
So, let’s take a closer look at mental illness and mental health in those with dementia, and some common causes of distress behaviors. What are some solutions for reducing the frequency and severity of distress behaviors, and the associated mental health problems?
Dementia and Mental Illness
Let’s start with a better understanding of mental illness.
According to the Centers for Disease Control and Prevention (CDC), “Mental illnesses are conditions that affect a person’s thinking, feeling, mood or behavior, such as depression, anxiety, bipolar disorder, or schizophrenia. Such conditions may be occasional or long-lasting (chronic) and affect someone’s ability to relate to others and function each day. There are many causes of mental illness including early adverse life events like trauma or abuse, social factors such as loneliness, and biological reasons such as chemical imbalances.”
As we said, it is not unusual for a person with dementia to also have a mental illness. Sometimes they occur together. The following are some that are more commonly seen in those with Alzheimer’s disease and other dementias. Let’s explore why the occur and what can be done to alleviate.
More than 2 million Americans have dementia-related psychosis including experiencing delusions (a fixed false belief) or hallucinations (hearing or seeing something that is not there). Common causes of psychosis include medical conditions such as infection. In this case, the psychosis may resolve when the underlying medical condition resolves.
Another common cause is misperceptions in which the person has difficulty discerning what is real and what isn’t. We can help to reduce the hallucination or delusion by finding and removing the environmental triggers creating their misperceptions of reality. And if psychosis is simply a result of advancing dementia, we may not be able to eliminate the symptoms, but we can help by diverting their attention away to something meaningful.
From the CDC: “Serious symptoms of depression occur in up to 50 percent of older adults with Alzheimer’s, and major depression occurs in about 25 percent of cases. Depression is often intermingled with the belief that this is simply an older adult’s reaction and awareness of progressive decline. But there is more to it than that, with some research suggesting there is a biological connection between Alzheimer’s disease and depression.”
Also from the CDC: “Anxiety disorders are also common, happening in about 30 percent of adults who have Alzheimer’s disease. Anxiety can include anything from generalized nervousness and fear of leaving home to agitation regarding changes of routine and feelings of suspicion or paranoia. Anxiety can also be psychologically and physically linked to Alzheimer’s disease.”
In the case of major depression and anxiety disorders, we always want to use our non-pharmacological interventions of providing person-centered, quality dementia care to alleviate the symptoms, but medications may also be necessary.
If a person with dementia is also living with a mental illness, the entire medical team needs to be involved ensuring the right medication is being used and the best dementia care is being delivered. In combination we hope to control the symptoms as much as possible so the person can experience quality of life and live in a state of emotional well-being and good mental health.
Dementia, Distress Behavior, and Mental Health
According to the CDC, “Mental health includes our emotional, psychological, and social well-being. It affects how we think, feel, and act. It also helps determine how we handle stress, relate to others, and make healthy choices. It’s important to remember that a person’s mental health can change over time, depending on many factors. When the demands placed on a person exceed their resources and coping abilities, their mental health could be impacted. For example, if someone is working long hours, caring for an ill relative or experiencing economic hardship they may experience poor mental health.”
Ok, let’s stop and think for a moment about living with dementia and all the opportunities for that individual to become stressed and overwhelmed beyond their capabilities of coping. In my experience, situational stressors in which “the demands placed on a person exceeds their resources and coping abilities” are common for persons with dementia and this will impact their mental health. These situations can create stress that leads to distress. Distress is defined as “extreme anxiety, sorrow or pain.” A person living with dementia is at a high risk of experiencing distress which will then provoke distress behavior communication.
Examples of distress situations:
- They don’t know where to go or what to do. They don’t recognize people around them or even recognize themselves in the mirror, and this creates anxiety.
- They may no longer live in their beloved home or engage in meaningful activities, and this creates a depressed mood.
- They may not trust the care partner, feeling frightened or violated and threatened by those providing care, therefore they become agitated, striking out or resisting care.
When a person is experiencing situational stressors such as these, they will communicate their feelings of emotional ill-being through behaviors such as resisting care, exit seeking, tearfulness, crying, withdrawal, threatening, hitting, or kicking. These feelings and the associated behavior responses are all examples of someone living in poor mental health.
Strategies to minimize distress:
What can we do to help reduce distress behavior and improve mental health?
Well, let’s start with what we don’t want to do. Too often, medications such as antipsychotics are used to address distress behaviors and we must remember how dangerous antipsychotics can be. These drugs come with a black box warning label that says they may cause premature death in the elderly. One study showed:
- Haloperidol caused one death in every 26 patients.
- Risperidone caused one death in every 27 patients.
Wow, that is why when distress behaviors occur, our first approach should always be nonpharmacologic whenever possible. If we can eliminate the stressor(s) from the situation, mental health can improve. This is always our goal so our care approach should be to:
- Always try to identify the source(s) of stress in the situation by asking yourself, “Who or what could be the stress trigger?” Look at triggers both inside the person such as pain and factors outside the person such as overstimulation.
- Seek to eliminate that root cause. Whatever the trigger for the anxiety, fear, depressed mood, or agitation, address it! If we can take away the trigger, the distress behavior minimizes, meaning mental health is improving.
The Impact of Dementia on the Mental Health of their Loved Ones
Now, let’s also consider the mental health of loved ones of those living with dementia and the many ways their mental health can be impacted.
Living with Alzheimer’s/dementia creates a tremendous amount of stress on the person with dementia and on their loved ones. It is often described as a disease that impacts more people than those living with dementia. How can the mental health of loved ones/families of those living with dementia be impacted?
Again, stress is the primary factor. Families have too many responsibilities, they don’t take care of themselves, prioritizing caring for their loved one, and possibly others such as their kids. They often put their own wants and needs aside in favor of what is best for their loved one, and often this leads to the decline of their own mental health.
They may withdraw socially out of embarrassment, creating loneliness and isolation.
Loved ones are asked to accept the death of the relationship they once knew. They may develop depression because they are experiencing dementia grief, and the many losses associated with changes in roles, dreams, etc.
They may experience anxiety as they worry about funds needed for higher levels of care or fear the future. What will it look like and what will be required of them?
Daughters and spouses tend to bear the caregiver burden the most and they may be required to make very difficult decisions, such as determining when it is the right time to move their loved one into a long-term care community. Both the caregiving and the tough decisions can create extraordinary stress.
Again, anxiety and situational depression can be common byproducts of dementia, only this time it is impacting loved ones.
Promoting better mental health for loved ones can be achieved when we:
- Encourage communication and listen. Stress can be reduced through sharing.
- Educate about dementia, mental health, and mental illness whenever possible. There are many opportunities for teachable moments.
- Provide support and direct them to resources that can be of further assistance. You can be a huge part of their needed support system and you can connect them to support groups and helpful care businesses and technology resources.
In summary, the mental health and emotional well-being of those living with dementia and their loved one must be assessed and addressed routinely by the medical team. “Living well” with dementia is always our top priority and it implies a state of emotional well-being: living free from distress and unnecessary drugs. Helping those with mental illness to get the best treatments and helping to create situations in which the person living with dementia and their loved ones can experience less stress and a better ability to cope will lead to better mental health for all.
Kim Warchol, OTR/L, is President and Founder of Dementia Care Specialists at Crisis Prevention Institute.