When You Suspect Cognitive Impairment, Take Appropriate Action
By Julie Jason, JD, LLM
Originally published by the American Bar Association's Voice of Experience, this article was its feature for the month of March.
When a lawyer (or investment counsel) is engaged in representing a client over time, there is an opportunity to develop a historical relationship. As a result, changes in client behavior may be observed. Something unexpected in the relationship, something out of the ordinary, may be perceived. For example, someone with strong math skills exhibited over the years becomes confused when it’s time to add a tip to a dinner tab. A perfectionist whose files and calendar are always organized cannot locate documents. A colleague receives notices of unpaid bills – unpaid due to forgetfulness, not carelessness.
When witnessing something that is out of character for a client, colleague, friend or family member, concern may lead to worry, and worry may lead to action. But what type of action? What is appropriate? And when is action called for? To prepare, we will review
Suspicion of Cognitive Impairment
The Need for a Diagnosis?
Diagnosis and Intervention
What’s Next Depends on the Circumstances
What If the Diagnosis Is Dementia?
Possible Benefits of Virtual Reality as an Intervention
Lessons from Successful Families
Resources
Suspicion of Cognitive Impairment
There are numerous studies that discuss the differences between normal or healthy aging and cognitive impairment, whether mild cognitive impairment (MCI) or advanced (Alzheimer’s disease (AD) or another form of dementia). (The differences are beyond the scope of this article, except to provide resources at the end.)
Suspicion of cognitive impairment can arise oh-so easily. Forgetfulness can be unsettling to the subject him- or herself and potentially irritating to family, friends, and colleagues. (“You’ve told me about that fishing trip 100 times, Dad, maybe more.”) Is that a reflection of healthy and normal aging or cognitive decline?
“The challenge to clinicians is to appreciate where the boundary between normal and abnormal is for a particular patient,” according to David Knopman MD and Ronald Petersen MD, (2014, p. 1454). “Forgetting is intrinsically human and increases with aging.”
Whether mild or severe, cognitive impairment involves these areas: “(1) learning and memory, (2) language, (3) visuospatial, (4) executive, and (5) psychomotor,” according to Knopman and Petersen (2014, p. 1454). “Mild cognitive impairment (MCI), calls for only one of these areas to be impaired and for substantial impairment, more than one. . .”
Because it is a challenge to experts themselves, lawyers, friends, and family need to refrain from drawing conclusions on their own. Instead, it is wise to make note of situations to prepare for informing the subject’s physician when the time is right. It is also important to understand that memory can be impacted by depression, stress, illness, medication, and many other influences that need to be factored into the equation by a physician, not a family member, friend, or colleague.
MCI is not universal among the elderly. However, of those diagnosed with MCI, the vast majority (80%) are later diagnosed with dementia (within 6 years) (Hwang and Lee, 2017, p. 1283).
Contrast that to normal (non-MCI) elderly, who are rarely (1-2%) diagnosed with dementia.
The elderly don’t necessarily move into MCI or advance into dementia, such as Alzheimer’s (AD). They could instead experience “healthy” aging, “normal” aging, or “age-related cognitive decline” (ARCD), “which is both independent of dementia and has an incidence 70% higher than dementia alone” (Juan and Adlard, 2019, p. 107).
Those who are diagnosed with MCI, however, experience “more substantial cognitive and memory decline than normal aging and represents a significant risk factor for the development of dementia” (Levey, et al., 2006, p. 1001).
It is yet unclear whether treatments can delay the “conversion from MCI to AD,” according to Levey, et al. (2006, p. 1001).
The Need for a Diagnosis?
Successful families understand the need for a diagnosis (and intervention) when there is concern for safety. “[D]iagnosis and intervention are necessary to ensure the health and safety of the patient,” when the individual is not managing medications, finances or transportation independently (Knopman and Peterson, 2014, p.1452).
Without a diagnosis, there is a “high risk for crisis-driven management such as acute hospitalizations, critical care unit admission, and premature institutionalization,” citing Tung (2020, p. 1281). All need to be avoided.
Diagnosis is not called for in all instances. As Knopman and Petersen point out, “cognitive screening of the elderly in the absence of a clinical concern has not been found to be of clear benefit. . . . The critics [of screening] point out the stigma associated with a diagnosis of cognitive impairment, the modest interventional opportunities, and the occasional reversal of MCI to cognitive normality” (2014, p. 1457).
Diagnosis and Intervention
If it is decided that a diagnosis is necessary, where can you turn? According to Jason Karlawish, M.D., Professor of Medicine, Perelman School of Medicine at the U. of Pennsylvania, it’s best to seek out the guidance of the person’s primary care physician, who would decide whether to make a referral to a specialist. Karlawish is the author of “The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It,” (St. Martin's Press, 2021), a book I highly recommend to families and for anyone in the position of serving clients.
To determine what is normal (and not) requires an individual assessment. Nine-tenths of the workup is history, according to Karlawish. The workup follows three themes and three stages of development.
- Difficulties performing the usual everyday tasks the person once performed effortlessly, such as taking medications or traveling outside the home.
- Changes in behavior and mood. Apathy is the earliest and most common symptom.
- Anxiety, depression, and false beliefs or delusions.
Developing a history involves talking to not only the person, but also “informants” such as a spouse or family members, or others who have witnessed changes over time.
A timely diagnosis is the goal; timely, meaning early in the onset of a potential disease. The sooner a diagnosis can be reliably achieved, the sooner a plan can be developed for the immediate and future care of the individual. Further, there is an opportunity to involve the individual, as “In the early stages, such as MCI, patients are aware of their cognitive difficulties and may themselves raise the concern with their physician” (Knopman and Petersen, 2014, p. 1455).
When it’s time for a diagnosis, an expansive review is necessary, as described in Mayo Clinic’s “Approach to the Older Adult with New Cognitive Symptoms,” June 2020. (See resources.) That review involves a full medical history from both the individual and family members, along with a mental status examination and functional review of strengths and weaknesses in performing daily living tasks over time.
What's Next Depends on the Circumstances
If you are the witness of behavior changes in a client or colleague, what actions should you take? The person you are concerned about “may not be the Joe I used to know.” Should you bring this up with the client or his or her family?
Karlawish believes you have an obligation to say something to Joe. “I’ve noticed you repeated a few things in a single conversation with me today. That’s different from our discussions of just a few months ago. Have you been noticing anything different?”
Regardless of the answer, you want to know if Joe is aware of changes and has sought help. (Some people normalize the changes, so they may not perceive an incentive to get a diagnosis, explained Karlawish.)
“You should look into that, Joe. Have you talked with your doctor about a referral who is good at assessing ‘mild problems’?”
Karlawish suggests adding in appropriate circumstances, based on the relationship: “I’d like your permission to relay my concerns to the doctor.”
As a follow-up, in a subsequent meeting, ask: “Joe, how did the assessment work out? What did you learn?” Is this overstepping boundaries? Karlawish said no; however, you will have to make that judgment call yourself.
It will be up to the doctor making the assessment to take a history, talk with family members and others who observed the behavior, and to reach a diagnosis. The result of the physician’s assessment will reveal whether there is a diagnosis of cognitive impairment and importantly, the stage of severity: how much impact is there on daily life? Some cognitive impairments are treatable, depending on the cause. For example, it could be medication, a medical illness, or depression or anxiety. A lot of these problems can be addressed, explained Karlawish.
What If the Diagnosis Is Dementia?
If dementia is diagnosed, that puts into motion getting educated about safety, care, and receiving a prognosis for the particular impairment. The future needs to be better understood, and a plan for handing the future needs to be put in place.
Hopefully, the impairment is discovered early enough for the subject to be involved. “Over time, the symptoms of Alzheimer’s and related dementias will make it difficult to think clearly. Planning as early as possible enables you to make decisions and communicate those decisions to the right people,” quoting “Planning for the Future After a Dementia Diagnosis” https://www.alzheimers.gov/life-with-dementia/planning-for-future#financial-planning. That resource sets out necessary actions.
It’s time to prepare for future incapacity while “Joe” is still able to do so with cognition. The many techniques to consider are set out in a comprehensive and well-thought-out book, “Don’t Let Dementia Steal Everything: Avoid Mistakes, Save Money, and Take Control” by Kerry R. Peck and Rick L. Law (American Bar Association, 2018).
Possible Benefits of Virtual Reality as an Intervention
While dementia has no cure at this time, it is worthwhile considering virtual reality (VR) intervention in appropriate cases, with the understanding that the technology is new as is its application to cognitive impairment.
Because VR uses a virtual environment, the subject interacts with virtual stimuli, typically using a headset and working with a therapist remotely or on premises.
The potential benefits, such as mental stimulation, the promotion of well-being and facilitation of social interaction and physical movement and balance, are described in “A Mini-Review of Virtual Reality-Based Interventions to Promote Well-Being for People Living with Dementia and Mild Cognitive Impairment” (D’Cunha, et.al, 2019).
The person’s doctor should be consulted for more details on VR intervention.
Lessons from Successful Families
To return to the idea of how successful families navigate cognitive impairment, the method is unique to the family. The key is taking action at the right time, by the right person, in the right way.
When is the right time? When might cognitive impairment be suspected? Be guided by the subject’s physician regarding these questions.
Who is the right person to start a conversation? A family member, friend, or colleague who knows the subject well can notice changes and open up a conversation. Since it is not unusual for someone to notice his or her own impairment, providing a reading list can be a start. It’s also easy enough to ask for a referral to a qualified physician for an assessment. This is a start. The goal is to see about planning for the future if dementia is diagnosed.
What is the right way to address cognitive impairment? Successful families seem to be able to address family challenges with care and skill, while preserving the dignity of the subject. Educating oneself is aways the starting point, followed by consultation with experts, and finally, the creation of a plan of care, including legal counsel and investment counsel. There are vast resources available.
The need for learning about normal healthy aging and cognitive impairment is essential. After all, millions of people, and many millions more to come as our population ages, may be called into action. As Rosalynn Carter is said to have stated: “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
Resources
Books
Karlawish, J. (2021). The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. St. Martin's Press., a book I highly recommend to families and for anyone in the position of serving clients.
Law, R. & Peck, K. (2018). Don’t Let Dementia Steal Everything: Avoid Mistakes, Save Money, and Take Control. American Bar Association. This book lays out a comprehensive review of the techniques and tools that someone would use to live with dementia, specifically Alzheimer’s disease.
Scholarly Resources
The Mayo Clinic’s “Approach to the Older Adult with New Cognitive Symptoms,” June 2020. This article, written by Ericka E. Tung, MD, MPH; Victoria Walston, MD; Mairead Bartley, MB, BCh, BAO, MD, reviews what is dementia, how mild and major cognitive impairment differ, risk factors such as age and inheritance, screening vs a timely diagnosis, how the diagnosis is made, based on clinical history, physical examinations, cognitive testing (including the Mini-Cog, which is a 3-item recall test), the Mini Mental State Examination (MMSE) and others, delivering the diagnosis, partnership with patients and caregivers, and pharmacologic therapy. https://doi.org/10.1016/j.mayocp.2019.10.013
Knopman, D. S., & Petersen, R. C. (2014). Mild cognitive impairment and mild dementia: a clinical perspective. Mayo Clinic Proceedings, 89: 10, 1452–1459. https://doi.org/10.1016/j.mayocp.2014.06.019
Mitchell, S. (2015). Advanced Dementia. New England Journal of Medicine, 372:26, 2533-2540. http://doi.org/10.1056/NEJMcp1412652
Dong, X. & Chen, R. & Simon, M. (2014). Elder Abuse and Dementia: A Review of the Research and Healthy Policy. Health Affairs (Project Hope). 33:4 642-649. https://doi.org/10.1377/hlthaff.2013.1261
D'Cunha NM, Nguyen D, Naumovski N, McKune AJ, Kellett J, Georgousopoulou EN, Frost J, Isbel S. (2019). A Mini-Review of Virtual Reality-Based Interventions to Promote Well-Being for People Living with Dementia and Mild Cognitive Impairment. Gerontology, 65: 4 430-440. doi: 10.1159/000500040.
Orgeta, V., Qazi, A., Spector, A. E., & Orrell, M. (2014). Psychological treatments for depression and anxiety in dementia and mild cognitive impairment. The Cochrane database of systematic reviews, 1:CD009125. https://doi.org/10.1002/14651858.CD009125.pub2
Lin, J. S., O'Connor, E., Rossom, R. C., Perdue, L. A., Burda, B. U., Thompson, M., & Eckstrom, E. (2013). Screening for Cognitive Impairment in Older Adults: An Evidence Update for the U.S. Preventive Services Task Force. Agency for Healthcare Research and Quality (US). PMID: 24354019, Bookshelf ID: NBK174643
Additional Resources
Appendix A-Functional Activities questionnaire
From Knopman DS, Petersen RC. Mild cognitive impairment and mild dementia: a clinical perspective. Mayo Clin Proc. 2014 Oct;89(10):1452-9. doi: 10.1016/j.mayocp.2014.06.019. PMID: 25282431; PMCID: PMC4185370.
In the past 4 weeks, does the patient have any difficulty or need help with:
1. Writing checks, paying bills, or balancing a checkbook;
2. Assembling tax records, business affairs, or other papers;
3. Shopping alone for clothes, household necessities, or groceries;
4. Playing a game of skill, working on a hobby;
5. Heating water, making a cup of coffee, turning off the stove;
6. Preparing a balanced meal;
7. Keeping track of current events;
8. Following a television show, book, or magazine and being able to discuss them with acquaintances;
9. Remembering appointments or remembering to take medications, keeping track of recent conversations, recent events, and the date;
10. Driving, traveling out of the neighborhood, or arranging to take public transportation;
Scoring guide: 0 = can do this without help or never did the activity; 1 = have some difficulty but can do this without help; 2 = need help with this; 3 = can’t do this
Appendix B-ten warning signs of Alzheimer's
From Alzheimer’s Association (June 2019). 10 Warning Signs of Alzheimer’s. Reprinted with Permission
1. Memory loss that disrupts daily life. One of the most common signs of Alzheimer’s disease, especially in the early stage, is forgetting recently learned information. Others include forgetting important dates or events, asking the same question over and over again, or increasingly needing to rely on memory aids (e.g., reminder notes or electronic devices) or family members for things the person used to handle on their own. What’s a typical age-related change? Sometimes forgetting names or appointments, but remembering them later.
2. Challenges in planning or solving problems. Some people living with dementia may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before. What’s a typical age-related change? Making occasional errors when managing finances or household bills.
3. Difficulty completing familiar tasks. People living with Alzheimer’s disease often find it hard to complete routine tasks. Sometimes they may have trouble driving to a familiar location, organizing a grocery list or remembering the rules of a favorite game. What’s a typical age-related change? Occasionally needing help to use microwave settings or to record a TV show.
4. Confusion with time or place. People living with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there. What’s a typical age-related change? Getting confused about the day of the week, but figuring it out later.
5. Trouble understanding visual images and spatial relationships. For some people, vision problems are a sign of Alzheimer’s. They may also have problems judging distance and determining color or contrast, causing issues with driving. What’s a typical age-related change? Vision changes related to cataracts.
6. New problems with words in speaking or writing. People living with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue, or repeat themselves. They may struggle with vocabulary, have trouble naming a familiar object or use the wrong name. What’s a typical age-related change? Sometimes having trouble finding the right word.
7. Misplacing things and losing the ability to retrace steps. A person living with Alzheimer’s may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. He or she may accuse others of stealing, especially as the disease progresses. What’s a typical age-related change? Misplacing things from time to time and retracing steps to find them.
8. Decreased or poor judgment. Individuals may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, or pay less attention to grooming or keeping themselves clean. What’s a typical age-related change? Making a bad decision once in a while, like neglecting to change the oil in the car.
9. Withdrawal from work or social activities. A person living with Alzheimer’s may experience changes in the ability to hold or follow a conversation. As a result, he or she may withdraw from hobbies, social activities or other engagements. They may have trouble keeping up with a favorite team or activity. What’s a typical age-related change? Sometimes feeling uninterested in family or social obligations.
10. Changes in mood and personality. Individuals living with Alzheimer’s may experience mood and personality changes. They may be easily upset at home, at work, with friends or when out of their comfort zone. What’s a typical age-related change? Developing very specific ways of doing things and becoming irritable when a routine is disrupted.