Author:
Kim Warchol, OTR/L, Founder of Dementia Care Specialists
Alzheimer’s disease, vascular dementia, Lewy body dementia, and frontotemporal dementia are chronic, progressive causes of dementia. Although these conditions are not currently curable, treatment can mitigate their impact by supporting health, function, safety, and well-being for the person diagnosed and for their loved ones.
Two broad treatment approaches are available: medical or pharmacological interventions and non-medical or non-pharmacological interventions. This paper briefly summarizes medical interventions, then focuses more deeply on non-pharmacological care because these approaches can often reduce risk, preserve dignity, support function, and improve quality of life without relying on medications that may carry significant side effects.
Current Medical/Pharmacological interventions
Recent advances include:
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Blood-based Alzheimer’s biomarker testing can help support diagnosis. A definitive diagnosis still requires autopsy after death, but these newer biomarker tests are improving the sophistication of diagnostic work during life.
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Anti-amyloid drugs including Lecanemab and Donanemab are prescribed during the mild cognitive impairment (pre-dementia) and very early/mild Alzheimer’s disease phases. Amyloid plaques occur outside the nerve cell and disrupt cell communication. These newer drugs are designed to treat the disease process by reducing the amyloid plaque in the brain.
Older interventions include:
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Cholinesterase Inhibitors: These drugs (e.g. Aricept) work on the synaptic connections to help healthy neurons (nerve cells) to communicate more effectively by preventing the breakdown of a neurotransmitter called acetylcholine. They are used for Alzheimer’s disease and other neurocognitive conditions such as Lewy body dementia. They can help manage cognitive decline (e.g. memory, attention, problem solving and learning) and therefore slow the progression of functional loss.
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Namenda/Memantine: This drug works to keep the nerve cells alive and healthy and has a neuroprotective effect. They are often prescribed in the moderate to severe stages of dementia (and used in combination with cholinesterase inhibitors) and can help slow symptoms of Alzheimer’s disease.
There are a variety of common side effects from these drugs including diarrhea, nausea, dizziness, and headaches. People with dementia may not tolerate the side effects well, choosing not to take the medications.
Drugs for Behavior and Psychological Symptoms of Dementia
Medications for behavioral and psychological symptoms of dementia, including agitation, aggression, anxiety, and depression, have been used for years. Their effectiveness varies, and many of these antipsychotics are used off-label, meaning they were not originally designed for older adults with dementia. Many also carry a black box warning stating that they may increase the risk of premature death in the elderly with dementia.
The side effects of these medications can be significant, including increased mortality risk, sedation that reduces quality of life, and dizziness that increases fall risk. Although the FDA approved Rexulti (brexpiprazole) in 2023 for agitation associated with Alzheimer’s disease, (and many other medications are prescribed off-label), medications should not automatically be the first treatment for distress behaviors because of their potential severe risks.
Non-Medical/Non-Pharmacological Interventions
Non-medical and non-pharmacological treatment interventions offer a safer, powerful way to support people living with dementia.
In non-pharmacological intervention, the goal is to optimize and maintain functional independence, overall health, safety, and emotional well-being for as long as possible without relying first on medication. To accomplish this, a dementia trained caregiver or professional will use a person-centered, three-pronged intervention: adapt caregiver approach, adapt the activity, and adapt the environment.
Adapting for Success at Every Dementia Stage
When we adapt, we skillfully align with the person’s current abilities by creating the just-right challenge in everyday, meaningful activities and by ensuring that the environment supports the person rather than creating barriers.
The ability to make the right adaptations requires understanding the characteristics of stages of dementia. Knowing what a person can and can’t do at each stage is essential to making the right adaptations.
As examples:
In the early stage, a person may be forgetful, lack initiation, get lost easily, or have difficulty finding items that are hidden away. At the same time, they CAN follow familiar routines and use environmental cues to navigate more independently and to complete daily tasks such as dressing, toileting, and grooming.
Example care approaches:
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Set their morning care supplies out each day on the sink, at their typical time, to cue them to brush their teeth, wash their face, shave, etc.
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Put labels on drawers or closets to help them find their clothes.
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Teach them to turn right at the end of the long hall when they see the grandfather clock, to help locate the dining room.
In middle stage, a person can no longer sequence themselves (remember the steps of an activity) and they are easily distracted. But they CAN follow one-step directions and hold and use familiar supplies (e.g. toothbrush, electric razor, paintbrush, feeding utensils).
Knowing this we could adapt by:
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Break down all simple, familiar activities into one step parts and cue through each step. Therefore, instead of saying, “brush your teeth” the care partner would say, “pick up the brush”, “wet the brush under the water”, “put paste on the brush”, “brush your teeth.”
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Change the environment to reduce distractions and help the person concentrate on the activity. For example, if the person is eating in a room with a lot of noise or visual distractions, reduce those distractions before setting them up to eat. If you want to visit, bring them to a quiet area.
When adapting our approach, it involves knowing how to communicate to ensure there is mutual understanding and to gain trust and agreement. It involves simplifying the activity so it isn’t overchallenging and beyond the person’s level of ability. It also means we create a physical environment that is comfortable, distraction free, and able to cue and prompt to support memory and wayfinding.
Non-pharmacological Approaches to Prevent and Calm Distress Behaviors
Of critical importance, dementia capable caregivers and professionals view behavior as communication. When viewed through this lens, distress behaviors become signals that something is wrong rather than inevitable symptoms we can only watch unfold. This perspective gives care partners a practical way to respond: look for the unmet need, reduce stressors, and adjust the approach, activity, or environment before distress escalates.
When this mindset is applied by dementia-trained care partners, it becomes invaluable in several key ways:
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We understand that our behavior influences their behavior. If I am stressed and impatient, I can create a stress reaction. But when I am calm and patient, I help regulate and calm the person in my care. Therefore, I manage my own stress level and behavior, taking ownership for the response, I illicit.
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We understand that crisis behaviors such as hitting typically do not happen suddenly; they often develop through a progression of escalation. Therefore, when I know how to identify the first signs of distress, such as anxiety, I can respond early to calm, helping to prevent a crisis that could put everyone at risk for harm or injury.
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We understand the concept of overstimulation and if a person reaches their stress threshold they may “sundown”, creating agitation and an unsafe situation. Therefore, I know how to proactively adjust activity levels and environmental stimulants to reduce risk of overstimulation and sundowning.
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We avoid individual stress triggers so that we don’t inadvertently provoke stress reactions. Therefore, I know ahead of time if someone in my care has past traumas or phobias, and I am sensitive to avoid situations that could trigger a stress response.
In closing
While scientists, researchers and pharmaceutical companies continue to invest significant time and resources into medications that may prevent dementia, slow disease progression, or manage cognitive and behavioral symptoms, care providers already have powerful tools available today.
Dementia-trained care partners and professionals can have a huge impact on independence and engagement by providing person-centered care, adapting their approach, modifying activities and environments. When they understand distress behavior as communication and are trained to look for the reason for a behavior, they are better able to prevent distress, reduce risk, and support the person with dignity. When they are trained in deescalation strategies, they are better able to reduce risk of harm and injury by calming and preventing a crisis.
Safe and effective medications may continue to evolve, but people living with dementia need meaningful support now. Non-pharmacological, dementia specialized care gives families, professionals, and care partners the practical tools they need today to create the very best outcomes for everyone involved.
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