Guest contributor: Kim Warchol, OTR/L, President and Founder of Dementia Care Specialists at Crisis Prevention Institute (CPI)

One in three seniors in the U.S. dies with dementia, and this number will grow exponentially as the baby boomers age. We often hear that a person is suffering from dementia. No wonder it is the most feared disease of aging. But it does not have to be this way. A person can live well with dementia if they are enveloped by skilled, and compassionate care.

An estimated 6.5 million Americans aged 65 and older are living with Alzheimer’s dementia and by 2050 the number of people aged 65 and older with Alzheimer’s disease is projected to reach 12.7 million.1        

Dementia refers to a group of symptoms such as cognitive decline (due to changes in the brain) and these changes are so severe they impact function and safety. Dementia can be caused by many diseases and conditions, with Alzheimer’s disease being the most common cause. Other common forms include vascular dementia, Lewy-body dementia and fronto-temporal dementia. All these are classified as chronic and progressive, meaning there is no cure, and the symptoms will get worse over time as an individual moves through stages of dementia.

Because there is currently no cure, we must employ our best chronic disease management practices designed to help a person and their loved ones to live well with dementia. This means we must:

  1. Prioritize and optimize functional independence, safety, health, and quality of life
  2. Support and educate loved ones
  3. Reduce common risks from becoming reality

The cornerstones that make up skilled dementia care include being person-centered and adapting activities to the just right level of challenge, to match the abilities and deficits found at each stage of dementia. In this article we focus on risk reduction, but the thread that connects each is the importance of using person-centered care and a person’s remaining abilities to create positive outcomes.

Helping a person to stay actively engaged in meaningful life activities at their best ability has many wonderful byproducts.

Dementia capable care stimulates the mind, body and spirit and has many benefits for the person at every stage of dementia. Staying active socially and doing as much for oneself as possible uses cognitive and physical abilities, serving as exercise that can optimize health, has emotional wellness benefits, and can reduce the prevalence of depression and anxiety.

In addition, this approach eases the care burden and optimizes safety for those who are providing care. Many behaviors seen in those living with dementia, such as resisting, cursing, threatening or hitting can be greatly minimized when we understand behavior as communication. There is often a root cause for these distress reactions, and when we understand and eliminate the trigger and use de-escalation techniques, we can prevent and minimize these behaviors that put all in harm’s way.

Dementia Capable Care Approach for Risk Management

A best practice objective is to provide preventative, quality care that reduces risks from becoming a reality. Another way to say this is, a dementia capable workforce works to prevent unnecessary and avoidable complications. Let’s look at key characteristics and some high risks at each stage in order to discern best methods to manage these risks.

In early-stage dementia (mild level), a person has many abilities and can be actively engaged in doing their Instrumental Activities of Daily Living (IADL), Basic Activities of Daily Living (ADL) and leisure activities. If the activity is simple and familiar, they can initiate and complete the steps, doing about 75% or more of the activity on their own. But the quality and safety of their work is compromised.

Some of the cognitive deficits in early stage include impaired short-term memory, new learning and problems solving, and poor judgment and safety awareness. Because of these challenges there is a decline in safe and effective performance of IADLs such as driving, money management, cooking, and taking medications, all requiring some degree of supervision and/or assistance. And there is a greater than average risk for accidents and injuries such as medication mismanagement, falls, frequent hospitalizations, and cooking fires. UTIs and becoming a victim of predatory crime are also common risks.

What makes this stage particularly dangerous is the limited insight the person holds about their own deficits and lack of awareness by the loved ones and care providers. Because verbal abilities are typically intact at this early stage, loved ones and healthcare workers may think the person is more capable than they actually are. For example, a person may be able to tell you what they would do in an emergency but may not be able to act on it.

What can be done to reduce risks? Personalized planning to reduce risks from becoming reality is both possible and vital and involves three key steps: Anticipate, set-up & assist, and closely monitor.

  1. Anticipate a person’s cognitive and functional challenges such as an inability to drive safely, learn something new (like following a new schedule or routine), or remembering to take medications on time. Plans to avoid these situations will reduce accidents and injuries.
  2. For early stage we:

    1. Set up supports such as someone to drive them to their appointments and social experiences, and set up simple calendars with daily routine and emergency numbers, and set up pill boxes.
    2. Provide about 25% cognitive assistance to help the person to do their IADLs safely and effectively, such as working with them as they pay their bills, prepare meals, and shop.
  3. And closely monitor, having someone available every day to help solve any problems that may arise (e.g., runs out of toilet paper) and to observe the living situation to identify concerns (e.g., spoiled food found in refrigerator, not paying bills on time, pills not taken according to schedule, etc.).

In middle stage (moderate level) an individual has the ability to use familiar tools and objects (e.g., fork or toothbrush), can follow one-step directions, and can access long-term memories. They also have the cognitive ability to walk. The person is able to do about 50% of a simple, familiar ADLs (e.g., grooming and dressing) and leisure activity, requiring 1:1 assistance throughout.

They have lost the cognitive ability to initiate and sequence themselves through steps to complete an activity. Communication challenges emerge such as difficulty using words to express their wants/needs and difficulty understanding others. This often creates the false belief “They can’t do anything anymore.” They have poor memory and attention and may become easily distracted, which can lead to not finishing activities. As an example, they may abandon a plate of food to follow someone or watch the tv that is on in the corner of the room. This may lead to weight loss.

A plethora of avoidable problems can arise from negative perceptions. Someone in middle stage may be described as “helpless” or labeled a “wanderer”, when in fact many abilities remain that are sadly squelched, behind this negativity. Distress behaviors such as agitation, sundowning, resistance or hitting may be seen as simply a symptom of dementia that needs medicating, rather than a communication that something is wrong. When in fact many of these distress behaviors are related to unmet needs and feelings of fear, loneliness, overstimulation, or sadness, that go unaddressed.

As a result, the list of high risks grows including excess disability (disproportionate level of dependence), unnecessary use of antipsychotics, falls, and elopement. And this individual is likely very mobile and if not directed to rest in seated activities or to nap, problems such as pacing, weight loss or dehydration can occur. Declining ability to communicate through words can lead to unmanaged pain.

What can be done to reduce risks?

  1. Anticipate the 1:1 care support needs, the ability and desire to walk, combined with the loss of ability to engage self in activity. Anticipate potential for pain or discomfort, and the fact they will need help meeting their basic needs (e.g., need to rest and relax, comfort, friendship, purpose, use restroom, etc.) and create plans to support. Anticipate distress reactions and create plans to reduce the triggers.
  2. For middle stage we:

    1. Set up a schedule with a mix of activity and periodic quiet/rest periods. This creates the benefits of engagement while preventing overstimulation. Instead of PRN, set up “routine” pain medications (if warranted) and establish daily routines that incorporate personal preferences and habits, to meet basic needs. Set up a safe environment that is free of tripping hazards or unsafe objects. Ensure staff have time for quality 1:1 care and time to create a trusting therapeutic relationship.
    2. Provide cognitive assistance to help the individual to use their abilities so they can do about 50% of all ADL and other activities. This keeps the person meaningfully occupied, reducing time spent bored or alone (which can help decrease depression or anxiety) or pacing (can help decrease falls and elopement).
  3. Closely monitor the person and the environment, ensuring the plans are being carried out which will help reduce risks and encourage and (re)direct to safe engagement.

In late and end stage (severe level), a person has a few remaining abilities such as may be able to bring finger food to their mouth and swallow (although may swallow unsafely), may be able to express self non-verbally and/or with a few words, access some long-term memory, and may be able to sit (with some support).

They have lost many cognitive and functional abilities, experiencing far less mobility and less active engagement, other than in eating. They require almost total care. The high risks are plentiful and primarily related to lack of movement, very poor attention and slow speed of processing, and very impaired communication.

Lack of movement can cause contractures, skin breakdown, wounds, or infections. Slow or unsafe swallowing can lead to poor nutrition, aspiration pneumonia and dehydration. Because this person has limited to no verbal ability, unmanaged pain, mood disturbances, or even failure to thrive may occur and may even go unnoticed.

What can be done to reduce risks? Our goals at this end of life have far less to do with optimizing independence as focus shifts to quality of life, pain management, and risk reduction strategies such as training staff how to safely feed and position the client. Creating meaningful moments and using therapeutic touch create valuable and beneficial connections. Observing and responding to non-verbal communications is critical. And again, we personalize and anticipate needs, set up the right care assistance and environment, while closely monitoring.

A person does not die from dementia. They die from complications related to dementia such as infections. But sadly “failure to thrive” may also be a root cause of death. Our end-of-life goals must include helping an individual live with dignity, reducing physical and emotional pain, and preserving personhood and wellbeing until the very last moment.

In summary, there is so much a dementia capable workforce can and should do to enable a person to live well with dementia. This proactive best practice includes being clear about the high risks and root causes at each dementia stage. We must tenaciously and skillfully plan to avoid circumstances that lead to unnecessary complications and provide skilled and compassionate care to optimize independence and quality of life. With this approach positive outcomes can prevail for all.

Nationwide is pleased to partner with Crisis Prevention Institute, which offers you evidence-based de-escalation and crisis prevention training and dementia care services. More information can be found here.

1 2022 Alzheimer’s Disease Facts and Figures

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