The Trial and Error Associated with Cognitive Decline

Westborough, MA May 25, 2017 Cognitive changes are common in patients with dementia. They become increasingly problematic with the disease progression. Some people suffering with dementia have difficulty with even the most basic activity of daily living like dressing themself.  Things taken for granted like following directions become a chore as the progression of dementia effects individuals who suffer with the disease.  This places a great burden on caregivers who must take over those important functions of daily life.
The clock drawing has been a feature on my blog for several years.  It is fun to see people work through the task.  Most people complete the task effortlessly.  Some are a bit defensive because it seems like such a benign request – “draw a clock…” and I often get “I am not an artist…” in anticipation of failure.  I have published over a dozen posts about the clock drawing as a measure of cognitive functioning.  Patient with dementia often experience a slow cognitive decline whereby even tasks like constructing a clock become a challenge.

The clocks drawn in this post reflect the effort of a person of 89-years of age who tried very hard to get it right.  She had enough preservation of her self- monitoring
Dementia_Clock female 89 Scan
3 Clocks drawn in succession by 89-year old female with hypoxia and underlying dementia of Alzheimer’s type – note size in centimeters 

that she could tell something was wrong.  As you can see the left most circle was the first attempt.  It was too small according to the patient and she wanted to try again.  The middle clock was her next attempt and shows her disorganization and minimal change in the size of the drawing – approximately 3 centimeters in size. In the center of the drawing there are 2 hands that roughly represent the time 11:10.  She told me she needed more space to place the hands so that they could be clearly read and offered to try a third time.  On the right is her final attempt.  There are two hands (to the right of the number 9 and a second pointing to the number 2). As you can see the circle is only 2 cm in size and was a modest improvement over the first two attempts.
She had fun drawing the clock and did not feel as though she had failed the task. I was encouraging and praised her for staying with the task. At some point she had lost her capacity to plan and execute her visual motor function of crafting the circle.  Each attempt was made with the goal of drawing a larger circle. This fine woman was still capable of doing many of her activities of daily living and enjoying her friends and family.  She was not at all upset that I had been asked to help with her care.
Dementia requires family support and can be costly to those in need of care.  The risk of caregiver fatigue exists in all families.  As much as possible, I enourage people to allow the patient to work toward completing their own self-care unless there are risks such as falling due to poor balance. This requires herculean patience and sensitivity because there is often a degree of “awareness” of the cognitive changes experienced by the patient himself. Preserved dignity and sense of independence go a long way toward quality of life in the latter stages of dementia.  Most spouses will do whatever it takes to support a loved one with whom they have shared 50 or more years of marriage and experience the decline in functioning as both a personal failure and a heart breaking loss.
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Encephalopathy with lingering concern of illness

Encephalopathy_clockWhat is encephalopathy?  People who have it generally do not see anything wrong with themselves. Patients are admitted to the rehabilitation hospital for the purpose of regaining as much independence as possible – even those with encephalopathy.  But it takes time.  Most stay 4-6 weeks although this depends upon the diagnosis and recommendation of the physician. However long a patient is given rehabilitation there is always a lingering concern of illness going forward.
Everyone in the rehabilitation team worries about a patient when the discharge is imminent and the patient seems unready to be sent home.  Anything can happen including unexpected fall, change in sleep hygiene, confusion, even new infection.  In some rare cases any of these calamities may befall an unprepared, uninsightful patient.  Even when there is a spouse on board with the discharge plan there are inevitable factors that may compromise a successful discharge resulting in potential problems once home. Encephalopathy results from infection, toxins, anoxia, and other metabolic conditions.  Most adults have experienced encephalopathy at one time or another perhaps after drinking too much.  The primary sign of encephalopathy is altered mental status, cognitive slowing and confusion.  Another feature is diminished self-monitoring and awareness that directly impacts insight, judgment and problem solving.
The clock drawing attached to this blog was drawn by a 65 year old woman with obvious confusion, disorientation, and limited insight.  She is frustrated to be in the hospital and both she and her supportive husband are pushing for her discharge home. “Why am I here?” see remarked with incredulity.  The clock drawing task is a simple one.  I have posted several blogs in hope of showing what a fascinating tool it is to assess cognitive functioning.  I have been using the clock drawing for 30 years since learning of its value in neuropsychological screening from Dr. Edith Kaplan at the V.A. Medical Center in Boston in the mid-1980’s. What happened with this clock?
IMG_5079
Image by Sefton
The woman who constructed this drawing has encephalopathy as a result of a respiratory illness that resulted in her needing a breathing tube to sustain her respiratory drive. At some point when her breathing stopped she sustained an anoxic injury.  This stems from the lack of oxygen in the brain and may lead to ischemic, inflammatory changes in the structures of the brain that are thought to subserve memory and learning.  The lady first drew the clock with all the numbers crunched together which may be seen in the upper right aspect of the drawing above.  Because of her confusion she was unable to plan and organize her drawing.  This is typical of some conditions like dementia.  However, the patient is a 65-year old woman and we now all know that “65 is the new 55” – when it comes to modern aging.
All kidding aside, the patient in this blog was entirely independent in the months before the current illness.  She was then asked to try again with the clock drawing – the directions are standardized.  At this point everything else was drawn – circle after circle providing vivid evidence of the perseveration, lack of self-monitoring and confusion associated with her ongoing condition. She thought nothing of it.  Now, she has convinced her spouse to bring her home where she most certainly will be more comfortable and may recover more quickly.  Not so fast.  Look again at the clock and the design copy below that was crafted a few days after the featured clock of the week above.
The rehabilitation team has lingering concerns about her safety and cognitive functioning and are looking to the patient’s family to impart those concerns in their own feedback to this impaired woman. By agreeing to take her home they are setting up an outcome that is unlikely to be favorable.  The hospital is manned with nurses, aides and physician support 24 hours a day.  There is no way that a singular spouse is able provide for this level of support and remain healthy himself. Caregiver burnout is a significant source of stress for all family members. This nice lady needs maximum assistance for all of her activities of daily living including dressing and bathing.  She has been in the hospital for 2 weeks and will need 2-4 weeks of additional rehabilitation to help in her recovery.  Her family seems concerned that the hospital may result in a depressive episode and they are correct.  But going home before she is safe to do so may result in greater harm and further hospital time. Caregivers are also at great risk of illness due to the effects of stress on the immune system.  I always encourage family members to “get to know the rehab team” who are taking care of their loved one and establish a trust with them.  That way when the discharged date is announced there will be no questioning the judgment and recommendations of those who know best. The design to the left is an example of clinical perseverationPerseveration.
The clock above was drawn by a 65-year old woman who is encephalopathic as a result of acute respiratory failure and hypoxic brain injury who wrongly believes she is ready to be discharged from the hospital.

Michael Sefton, Ph.D. is the director of Psychology and Neuropsychology at Whittier Rehabilitation Hospital in Westborough, MA

The cumulative impact of dementia on caregivers

dementia-symptoms-and-brain changesWESTBOROUGH, MA January 20, 2015  The impact of dementia is no greater than on those who remain behind to care for those afflicted with dementia.  Typically, this may be a singular spouse who has chosen to care for their loved one through the insideous stages of dementia.  Often in direct opposition to adult children, who may be intellectually dispassionate about what should or should not be done for the affected parent. This can take an enormous toll on the health of the surviving spouse who is often filled with guilt and sadness as they witness their life partner slowly fade away alone and often without substantive, hands on support.  No greater sense of despair and futility exists as when the declining husband or wife can no longer remember a devoted caregiver or the memory of a shared life. Even worse is the tangle of doubt over what more can be done. Their futility is painful to see for those who provide care for the patients and the caregivers.

Dementia and Aging

Dementia is a disease that most people have heard something about.  There are several variants of the disease including Alzheimer’s, Lewy Body, frontotemporal, and vascular dementia just to name a few of those more prevalent.  Most know the cluster of functional changes that occur with the slow but progressive loss of neurocognitive function that often starts deep within the brain in the 6th or 7th decade of life.  It starts with something as benign as forgetting a conversation after just a few minutes or being momentarily lost in a familiar place in town.  As the condition progresses, patients are rendered more forgetful, lose appreciation for tasks like paying bills, personal hygiene, eventually unable to recognize loved ones and care for their own basic needs.  As with any life changing sign of debility it is often difficult to admit and usually more difficult to address.  Denial is a common first reaction when dementia is suspected.  And feared.

There are many myths associated dementia that are worth pointing out.  First, old age and dementia are not synonymous.  Patients always say to me “what do you expect I am 82 years old” when I first begin the assessment process.  Research according to the APA, has shown in the right environment memory should not fail solely on the basis of age.  Next, there are many conditions that mimic dementia but are fully treatable if addressed sooner rather than later.  Arguably, depression, for example, often mimics dementia because of the associated change in attention memory, and behavior.  It is far more prevalent than Alzheimer’s and has a very high rate of treatment success.  The third myth is that there is nothing that can be done to stave off the mental inopertivity of senility. Wrong. But one needs to take responsibility for personal well-being long before the grip of dementia has begun unraveling one’s neurocognitive infrastructure.  This includes regular exercise, mental stimulation, nutritional balance, and regular social interaction.  It would not hurt to continue working or volunteering just to keep yourself in physical and cognitive shape. And finally, dementia is not life’s inevitable end point – whatever the age.  80 is the new 70 – people are living longer.  There are currently 96,000 centenarians in the United States.  In 30 years there will be over one million people who are over the age of 100.

Caregiver distress

Caregivers of dementia sufferers themselves suffer greatly.  The daily care of someone with dementia drains the emotional reserve needed to replenish the “self” unless the depleted caregiver can find a healthy, restorative balance.  The surviving spouse is sometimes under great stress to keep a loved one in his home – out of a nursing home. They anguish with each dying day in witness of a withering of human spirit – once father.  The decision to admit one’s spouse to a dementia care facility conjures up images of the locked wards, vitriolic nurses, and exploitive, uncaring staff – another myth germinated in the guilt and self-recrimination of husbands and wives, and families who have forever tried and failed to slow the disease.  Signs of caregiver burnout include sleep disturbance, irritability, being on edge, anxiety, unrecognized anger, and personal neglect.  Eventually, the stress associated with being a caregiver will errode whatever well-being may be left unless supoprt and balance can be found. No easy task – especially when a selfless spouse wants only to have things the way they were.

In truth, long-term care facilities are equipped to take care of someone with dementia with a round the clock team of nurses and rehabilitation therapists.  Making the decision to admit the demented family member may be aided by a family physician, knowledgable friend, or trusted therapist. Day treatment programs in many areas around the country provide temporary respite.  They are a good first step in diminishing caregiver fatigue. They offer free time to caregivers for restoration of empathy and the needed emotional refueling that comes from seeing friends, family, or dinner out, or a Sunday mass.

The best way to handle a situation like this is to surround oneself caring friends.  It is okay to talk about how difficult it may have become.  It is not a betrayal to feel angry inside or to reach out to family for respite care.  The financial concern over caring for a patient with dementia is very real.  It is expensive care to get and not readily available across the country or elsewhere.  Some hospitals or clinics offer free dementia care workshops or support groups that can provide helpful information and knowledge that you are not alone.  Learn what services are available in your area.  Talk to people and restore your self and believe that you are worthy of a rest – if even a short one.

REFERENCE: APA (2015) http://www.apa.org/pi/aging/ memory-and-aging.pdf. Taken 1-18-2015.