This is something that I see periodically in the population of Alzheimer’s Disease and Related Dementia (ADRD) patients I work with as director of care for a home care agency. Named for Joseph Capgras, the French psychiatrist who first described it, this delusion also sometimes is seen in people who have schizophrenia or bipolar disorder, or where there has been some type of brain injury or disease. Regardless of its source, it is likely less rare than is typically believed by psychiatrists and psychologists (Dohn and Crews, 1986), and therefore deserves more public and professional awareness.

It can be highly perplexing and upsetting for both the person experiencing Capgras, as well as for their caregivers and those who are the misidentified “imposters” (Moore, 2009). There are more effective ways to help manage someone suffering from Capgras and dementia, as well as methods that likely will increase management difficulties. Unfortunately, the approaches that are likely to increase difficult behaviors are the very ones to which family and professional caregivers instinctively gravitate (Moore, 2009). However, we find effective guidance in all aspects of dementia behavior management — including Capgras — when we turn to Habilitation Therapy, the compressive behavioral approach to ADRD that the Alzheimer’s Association finds to be a best practice (Alzheimer’s Association, 2001, n.d.).

Three core concepts found within Habilitation Therapy can be most helpful in dealing with Capgras Syndrome (Moore, 2009). They are to:

• Enter the reality of the person with dementia
• Never argue or correct
• Focus on creating positive emotional experiences to address challenging behaviors

Let’s explore each in more depth…

1. Enter into their reality. Imagine for a moment what it must be like to truly believe that a person or place you care about is an imposter. Someone you count on and feel close to, the comfort and safety of your own home is all some weird, unfathomable charade. As if the world wasn’t already topsy-turvy with having dementia, now this trusted person or beloved place is somehow involved in a fraud with an identical imposter! How horrifying and upsetting such a situation must be. Who and what can you trust? What is safe? Real? Seeing the world through the experiencer’s eyes is the first step to understanding their needs (Alzheimer’s Association, n.d.).
2. Never argue or correct.Focusing on correcting a dementia patient’s constantly twisted information and misguided understandings creates a never-ending struggle. A person with dementia cannot keep “facts” straight, and correcting them will not help for more than a minute or two. Arguing that they are wrong and trying to prove it to them is unlikely to yield anything but resentment, discouragement, and hurt feelings. Habilitation Therapy says to stop arguing and correcting immediately and in all cases. Care partners need to let go of having the objective “facts” set right – it just cannot be done. Trying to do so can seriously damage the relationship with the person with dementia, and feelings of love and connection can quickly be replaced by resentment and anger that go both ways. This is particularly true with Capgras, where the very nature of care partners’ relationships are called into question.Having Capgras Syndrome is not the dementia patient’s fault. It is not the care partner’s fault either, and they must stop taking the problem as a personal insult, and trying to correct its misguided conclusions. The confusion is just the disease at work. (Alzheimer’s Association 2011, n.d., Snow, n.d., Moore, 2010, n.d.).
3. Create positive emotional experiences. In this situation, where your ability to think through and solve problems is seriously impaired, what would your needs be if suddenly faced with an imposter? I’d bet on needing reassurance, love and connectedness, and feeling safe. It is up to a dementia patient’s care partners to help create an environment where such emotions can thrive. (Alzheimer’s Association 2011, n.d., Snow, n.d., Moore, 2010, n.d.).

Putting it All Together

Here are elements of an Habilitation Therapy-consistent response to an episode of Capgras Syndrome (Alzheimer’s Association 2011, n.d., Snow, n.d., Moore, 2010, n.d.):

• Acknowledge their feelings. “Of course this is upsetting. Are you OK? I’m so sorry this is happening to you.”
• Get and stay emotionally connected. Connect to the emotional aspect of the dementia patient. “I care about you. You are safe with me.” Or “[Name of person with the imposter] loves you. I love you too. She or he sent me while she or he can’t be here. You are safe with me.” However it can be done, a warm emotional connection must be made and maintained.
• Send the imposter away. If another person is present, that person can shoo away the imposter and say to the dementia patient, “I sent them away. You are safe with me.” In a while, have the loved one return, and engage immediately on an emotionally positive level. Have the other person recognize them as who they are, also engaging warmly and emotionally.
• Connect through the ears. Have the person with the imposter connect through sound only. For example, come home and shout from outside the sight of the dementia patient, For example: “Hi, honey, it’s your husband Bob, I’m home! I can’t wait to tell you about my day! How are you?” – or whatever makes a connection to the warm emotions in the relationship. Keep talking as he or she comes into sight, connecting emotionally. “You look so great in that color shirt. I love you, and I just saw our uncle Bob who also sends his love. Dinner smells great! What’s cooking?” This may help make a positive identification of the “real” person more possible (Ramachandran, 2007).

Connecting emotionally and warmly to the person with dementia is key to successful management. Arguing and proving through logic and fact that the person with dementia is wrong will not work. Each person’s malfunction is unique and each needs a unique intervention in the moment; creativity by care partners will be needed to find the most effective approach. But the basic underlying Habilitation concepts for successfully managing Capgras remain the same case to case (Alzheimer’s Association 2011, n.d., Snow, n.d., Moore, 2010, n.d.).

References

Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (n.d.) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum. (Watertown, MA). p. 68.

Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (August 2, 2011) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum [Training Course]. (Lawrence, MA)

Ellis, H., Lewis, M. (2001). Capgras delusion: a window on face recognition. TRENDS in Cognitive Sciences Vol. 5 No. 4.

Hirstein, W., Ramachandran, V.S. (1997) Capgras Syndrome: A Novel Probe for Understanding the Neural Representation of the Identity and Familiarity of Persons. Proceedings, Biological Sciences, Vol. 264, Issue 1380, Mar. 22, 1997), 437-444.

Dohn, H., Crews, E. (1986). Capgras syndrome: a literature review and case series. Hillside J. Clin Psychiatry. 1986; 8 (1): 56-74. Retrieved January 23, 2013 from www.ncbi.nlm.nih.gov/pubmed/3744300.

Moore, B. L. (2009). Matters of the Mind and the Heart: Meeting the Challenges of Alzheimer Care. New York: Strategic Book Publishing.

Moore, B. L. (Nov. 20, 2010) StilMee™ Certification for Professionals: Working respectfully and effectively with people with Memory Loss [Training Course] Burlington, MA.

Ramachandran, V.S. (2007). V.S. Ramachandran: 3 clues to understanding your brain. TED Talks. www.ted.com/talks/vilayanur_ramachandran_on_your_mind.html.

Silva, J., Leong, G., Weinstock, R., Boyer, C. (1989). Capgras Syndrome and Dangerousness. Bull Am Acad Psychiatry Law, Vol. 17, No. 1, 1989 (13).

Snow, T. (n.d.) The Art of Caregiving. [Video] Florida: Pines Education Institute of Southwest Florida.

As populations in low and middle-income countries are aging, rates of dementia are rising, say Dr. Robert Stewart of King’s College London, UK, and colleagues in the journal PLoS Medicine. Currently, more than 35 million people worldwide have dementia, the majority of which is Alzheimer’s disease. More than 115 million people may have dementia by the year 2050, with much of this rise occurring in low- and middle-income countries.

“Mild cognitive impairment is a construct frequently used to define groups of people who may be at risk of developing dementia,” explain Dr. Stewart and colleagues. “It can be seen as an intermediate state between normal cognitive aging and dementia.”

People with mild cognitive impairment have problems that are more severe than those normally seen in people of a similar age, such as misplacing things and forgetting appointments, but they have no other symptoms of dementia and are able to look after themselves. The condition is currently defined as “a syndrome with impairment of memory or another cognitive deficit that does not interfere substantially with personal affairs nor result in inability to live independently.”

Knowing a country’s rates of mild cognitive impairment is crucial for helping governments plan their future health care and social support needs, but the rates in low- and middle-income countries are largely unknown.

The research team analyzed survey findings on 15,376 people ages 65 years or older without dementia living in Cuba, Dominican Republic, Peru, Mexico, Venezuela, Puerto Rico, China, and India.

Mild cognitive impairment was associated with physical disability, anxiety, apathy, and irritability, but not depression. It was not linked to age or education. Men had a slightly higher rate of mild cognitive impairment than women. This finding contrasts with higher reported rates of dementia among women than to men, but could be explained by the exclusion of confirmed dementia cases. Experts from the Mayo Clinic, Rochester, Minn., say that women may move from normal cognition directly to dementia at a later age but more abruptly.

Rates of mild cognitive impairment varied more than five-fold between countries, from 0.8 percent in China to 4.3 percent in India, but the authors think this mainly reflect difference in the diagnostic tests used.

The authors conclude that mild cognitive impairment “was consistently associated with higher than expected disability and neuropsychiatric symptoms.” But they add that longer-term figures are needed to confirm the findings, in particular, to investigate the factors that may protect against progression to dementia.

“This is one of the first studies, to our knowledge, to investigate the prevalence of mild cognitive impairment with related memory problems in low- and middle-income countries, where the large majority of older people and people with dementia currently live,” they write.

They point out that the large numbers of individuals affected “will have significant implications with regard to social support and future health care costs, especially as systems are not in place to cope with increased neurodegenerative disease and health resources at present are already extremely limited.”

Findings such as these are helping “build an evidence base to inform the development and implementation of policies for improving the health and social welfare of older people in low- and middle-income countries.”

A review carried out in 2008 also found that mild cognitive impairment is associated with these symptoms, which the researchers believe are of “potential importance for defining subgroups at higher risk of developing dementia in the future.”

In the review, Liana G. Apostolova, MD, of the University of California-Los Angeles (UCLA), explains that “behavioral abnormalities may prove to be a valuable biomarker for impending dementia.” They looked at the published evidence and found that behavioral abnormalities are reported in 35 to 75 percent of mild cognitive impairment patients, with the most common being apathy, anxiety and irritability. In addition, the researchers found evidence of a link with depression.

“There is a compelling body of evidence that mild cognitive impairment patients with behavioral features are more prone to develop Alzheimer’s disease than patients without these features,” they write in the journal Dementia and Geriatric Cognitive Disorders.

“The behavioral changes observed in mild cognitive impairment are similar to those of Alzheimer’s disease, and may help identify the subgroup of mild cognitive impairment patients with early Alzheimer’s disease,” they conclude.

Some of the risk factors for mild cognitive impairment and dementia are: physical inactivity, infrequent participation in mentally or socially stimulating activities, high blood pressure, diabetes, and smoking.

References

Sosa, A. L. et al. Prevalence, Distribution, and Impact of Mild Cognitive Impairment in Latin America, China, and India: A 10/66 Population-Based Study. PLoS Medicine February 8, 2012 doi:10.1371/journal.pmed.1001170

Apostolova, L. G. and Cummings, J. L. Neuropsychiatric Manifestations in Mild Cognitive Impairment: A Systematic Review of the Literature. Dementia and Geriatric Cognitive Disorders Vol. 25, No. 2, February 2008, pp. 115-26. doi:10.1159/000112509

A 65-year-old woman diagnosed with early-onset Alzheimer’s Disease had what had become a typical spat with her spouse of 40 years. He argued, furious and insulted, “I’m your husband! Don’t you know me?!” “You look exactly like him,” she said quietly, “but I know that you’re not him.” Nothing could convince her otherwise, though the man told her many things only her husband would know. “You are one of the two imposters that come around here, not my husband,” she insisted.

Are these the plots of psycho-thriller movies? Scary stories told around a campfire? Disturbing dreams? No – they are two examples of a neuropsychological condition called Capgras Delusion or Capgras Syndrome, also known as the “Imposter Syndrome” (Hirstein and Ramachandran, 1997).

Capgras Syndrome, named for Joseph Capgras, the French psychiatrist who first described it, also can be seen occasionally in people who are psychotic (typically schizophrenic), or where there has been some type of brain injury or disease (Hirstein and Ramachandran, 1997). Regardless of its source, it can be equally perplexing and upsetting for the person experiencing it as it is for those around him or her to encounter it.

Within psychiatry and psychology, Capgras is considered extremely rare (Ellis and Lewis, 2001, Hirstein and Ramachandran, 1997). There is evidence, however, that it is not as rare as most clinicians believe. It is “uncommon,” but often overlooked (Dohn and Crews, 1986). From my own experience as the director of care for a home care agency, I concur: I see it often enough within my population of people with Alzheimer’s and other related dementias (ADRD) that it is likely not extremely rare.

While Capgras may not be typical, it certainly deserves to be better known both by the general public and among helping professionals. For those of us who love or work with such patients, we need to know how to manage the challenging behaviors that arise from it. Assessment of such patients’ potential danger to others needs to be performed (Silva, Leong, Weinstock, and Boyer, 1989). Awareness of the presence of Capgras also will help caregivers and families know how to better manage their own behavior around and feelings about its symptoms, particularly for the sake of those who are deemed “imposters.”

What Causes Capgras Syndrome?

It’s not known for certain what causes Capgras, but researchers have evolved several credible theories. One is from neurologist V.S. Ramachandran (Ramachandran, 2007). Ramachandran believes that a malfunction between the brain’s visual cortex and the emotional feeling of “familiarity” causes the sufferer to think he or she is seeing a perfect duplicate, not the real thing. The eyes are reporting correctly, but emotions of familiarity aren’t present. The conclusion: here’s an exact imposter.

Ramachandran also reports that a brain injury patient with Capgras was able to correctly identify his mother when he heard her on the phone, but not when he saw her. He hypothesizes that sounds may be correctly connected to the feelings of familiarity in some cases (Ramachandran, 2007).

There are several features particular to Capgras:

1. The patient has a brain injury or disease.
2. He or she recognizes that a person or place is exactly like the “real” one, but insists it is not.
3. The imposter always is a person or place with which the patient is familiar, not a stranger, vague acquaintance, or a new place.
4. The problem does not fruitfully yield to psychological analysis or interpretation; it is a biological disorder.

Prosopagnosia, a better-known form of facial misidentification, differs from Capgras in that it causes a total inability to recognize previously familiar faces (Ellis and Lewis, 2001). Capgras includes easy recognition of the face, but disagreement about the person’s true identity.

Are Capgras Sufferers Potentially Dangerous?

There are some reported cases where those suffering from Capgras delusion have become dangerous to others, with violent behavior resulting in injury and even death. There is very little research on this subject and not much information with which to reliably predict violence — which is striking given that great hostility and resentment are typical of how sufferers of Capgras view “imposters.”

In a paper by Silva, Leong, Weinstock, and Boyer (1989), they stated that at that time there was little published on the subject of danger and Capgras. A further search in the literature for this article found no papers published later than that date. It should be noted, however, that no cases have been found in the literature of danger paired with dementia; all cases were connected to diagnoses of schizophrenia or bipolar disorder.

Silva, Leong, Weinstock, and Boyer (1989) report several important factors to take into account when assessing danger:

1. Those “…suffering from multiple coexisting types of delusions of doubles may present with significant dangerous behavior…”
2. Where there is unabated hostility toward the misidentified person, “… the slightest
   perceived provocation that the misidentified persons are in some way harming the affected individual may serve as a necessary and sufficient psychosocial stressor that may upset this delicate equilibrium.” Violent behavior could potentially be the outcome.
3. “…[T]he dangerous behavior… related to the specific delusional content in each case” can be vital. If the delusion points to great danger or evil on the part of the “imposter,” this may increase the potential for violence.
4. Accessibility to the people involved in the delusion should also be part of the assessment. Is the “imposter” living with the person who holds the delusion, thereby increasing likelihood for opportunity for triggers for violence?
5. Pre-existing emotional, psychodynamic factors that increase the potential for violence need to be assessed. For example, does the relationship before the delusion between the Capgras sufferer and the misidentified person include high levels of hostility, hatred, or even abuse or assault, thereby increasing the likelihood of future violence?

Violence aside, managing the day-to-day difficult behaviors and emotions around Capgras and dementia takes some specific skills. These will be discussed in Part 2 of this article.

References

Ellis, H., Lewis, M. (2001). Capgras delusion: a window on face recognition. TRENDS in Cognitive Sciences Vol. 5 No. 4.

Hirstein, W., Ramachandran, V.S. (1997) Capgras Syndrome: A Novel Probe for Understanding the Neural Representation of the Identity and Familiarity of Persons. Proceedings, Biological Sciences, Vol. 264, Issue 1380, Mar. 22, 1997), 437-444.

Dohn, H., Crews., E (1986). Capgras syndrome: a literature review and case series. Hillside J. Clin Psychiatry. 1986; 8 (1): 56-74. Retrieved January 23, 2013 from www.ncbi.nlm.nih.gov/pubmed/3744300.

Ramachandran, V.S. (2007). V.S. Ramachandran: 3 clues to understanding your brain. TED Talks. www.ted.com/talks/vilayanur_ramachandran_on_your_mind.html

Silva, J., Leong, G., Weinstock, R., Boyer, C. (1989). Capgras Syndrome and Dangerousness. Bull Am Acad Psychiatry Law, Vol. 17, No. 1, 1989 (13).

• Finances. Not enough money or the fear of not having enough to buy gifts leads to sadness and guilt. The stress of financial hardship during this economic downturn is often compounded by shame. When you can’t afford to celebrate it can feel devastating.
• Stress. The stress of shopping and planning family dinners when you’re already overworked and tired can be overwhelming.
• Loneliness. A whopping 43 percent of Americans are single, and 27 percent of Americans live alone. When others are with their families, it can be very painful for those who are alone. Seventeen percent of singles are over 65, when health, age, and mobility can make it more difficult to enjoy yourself.
• Grief. Missing a deceased loved one is painful at any age, but seniors have more reasons to grieve.
• Estrangement. When you’re not speaking to a relative, family get-togethers can usher in feelings of sadness, guilt, resentment, or inner conflict about whether to communicate.
• Divorce. If you’re newly divorced, the holidays may remind you of happier times and accentuate your grief. It’s especially difficult for adult children of divorce who have to balance seeing two sets of parents. The stress is multiplied for married children who have three or even four sets of parents to visit.
• Pleasing. Trying to please all of your relatives – deciding what to get, whom to see, and what to do – can make you feel guilty and like you’re not doing enough, which leads to depression.
• SAD. Many people experience the blues during gloomy weather due to decreased sunlight, called Seasonal Affective Disorder (SAD).

Much of the planning, shopping, and cooking is done by women, so they carry the greater burden in preparing for family gatherings. Women are at twice the risk for depression than men. After heart disease, depression is the most debilitating illness for women, while it’s tenth for men. To read more on this, see Depression in Women.

Some measures you can take to cope with the holiday blues include:

• Make plans in advance, so you know how and with whom your holidays will be spent. Uncertainty and putting off decision-making add enormous stress.
• Shop early and allow time to wrap and mail packages to avoid the shopping crunch.
• Ask for help from your family and children. Women tend to think they have to do everything, when a team effort can be more fun.
• Shame prevents people from being open about gift-giving when they can’t afford it. Instead of struggling to buy a gift, let your loved ones know how much you care and would like to, but can’t afford it. That intimate moment will relieve your stress and nourish you both.
• Don’t allow perfectionism to wear you down. Remember it’s being together and goodwill that matters.
• Make time to rest and rejuvenate even amid the pressure of getting things done. This will give you more energy.
• Research has shown that warmth improves mood. If you’re sad or lonely, treat yourself to a warm bath or cup of hot tea.
• Spend time alone to reflect and grieve, if necessary. Pushing down feelings leads to depression. Let yourself feel. Then do something nice for yourself and socialize.
• Don’t isolate. Reach out to others who also may be lonely. If you don’t have someone to be with, volunteer to help those in need. It can be very uplifting and gratifying.

The signs of depression are feelings of sadness, worthlessness or guilt, crying, loss of interest in usual activities, fatigue, difficulty concentrating, irritability, social withdrawal, and changes in sleep, weight, or appetite. If these symptoms are severe or continue for a few weeks, more than the holidays may be the cause. Seek professional help.

“Oh, she sees funny things,” said the daughter. “She has Charles Bonnet Syndrome.”

I was in an intake interview with the pair before placing a caregiver in the home of this delightful 95-year-old woman with macular degeneration. We had been talking for about 40 minutes before she mentioned her “visitors.” It was already clear that she was fully oriented, sound-minded, intelligent, witty, and sharp. “When this first started, I thought I had gone crazy, but I know now I haven’t,” she said. “Now I just sit back and watch the show. Having Charles Bonnet Syndrome is like seeing a little movie, though it is quite strange.”

Hallucinations of vividly clear, complex patterns, people, faces, buildings, cartoons, children and animals – often in amazing detail – would be understandably disturbing and frightening. But this woman had learned that this trick of the mind happens to some people who have had vision loss. Hers was the healthiest reaction to Charles Bonnet Syndrome (CBS) I had ever seen.

CBS – named for the Swiss naturalist who first described it in 1760 (Bellows) – is little discussed and not widely known. Because I work with many elderly people, I know it because there is so much macular degeneration among the aged. It is the leading cause of blindness in those over 60 (National Institutes of Health and the National Library of Medicine). It is not thought to be rare, though it is likely vastly underreported: those who experience it are terribly frightened they have become crazy or demented, so they don’t dare mention their visions. (Menon, Rahman, Menon, and Dutton, 2003). However, it may occur in as many as one-third of visually impaired people (Light House International).

Such silence and fear are not entirely unreasonable. CBS can be misdiagnosed and often goes unrecognized by medical professionals (Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003). Families often panic. Patients reporting such symptoms should be checked medically against the possibility of other causes, such as neurological diseases or medication side effects. CBS also can occur where damage or disease affects the area of the visual cortex of the brain. Those who experience it without known visual impairment should be checked for other conditions. (Royal National Institute of Blind People).

15 Tips for Managing Charles Bonnet Syndrome

There is no cure for Charles Bonnet Syndrome, so patients need to learn to live with and manage it — all too often on their own and in silence. Some patients can develop depression or anxiety as a response to CBS. There are, however, a variety of steps that can be taken to support low vision patients at risk for CBS, and to minimize its negative emotional effects:

1. Every health care practitioner, person with low vision, their family and caregivers should be educated about CBS.
2. Medical personnel need to learn how to correctly screen for and diagnose CBS (Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003).
3. An approach to screening that makes it easy for patients to admit their symptoms must be in every physician, nurse and nurse practitioner’s toolkit. (Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003). “You know, many people who have vision loss see things that aren’t there. It’s called Charles Bonnet Syndrome. These are nothing to worry about, but they can be upsetting if you don’t know that. Have you ever experienced anything like this?”
4. Any depression or anxiety should be treated appropriately with medication, counseling or some other applicable therapy (Light House International; Roberts, 2004).
5. “Normalizing” the experience is absolutely vital, but without being dismissive of any upset the visions may cause the person. “Yes, lots of people have CBS, and they think they’re going crazy or have dementia, but they’re not… who wouldn’t think at first that they’ve lost their mind?” (Royal National Institute for the Blind)
6. CBS patients should be encouraged to talk about their visions rather than remain silent about them. (RNIB; Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003)
7. CBS usually stops within 12 to 18 months. Reminding the patient of this every so often can be helpful. “Oh, did you have one of your Charles Bonnet episodes again? What did you see? I hope it didn’t upset you too much. You know, it should go away in time.”
8. A good sense of humor can help in adjusting well to CBS (Roberts, 2004). Family and health care professionals can affirm lightheartedly how strange and bizarre the visions can be. Jokes about what is seen can be made, but only if the patient finds them amusing.
9. Fascination for the images and the wonders of the brain can help reframe CBS from a problem to an “experience.” “Isn’t it amazing how the brain is stimulating itself by making all those amazing images! Did you know you had all of these tucked away in your head? Your brain is just so remarkable!” “Butterflies flying out of your toaster? School buses driving down your hallway? What creativity!”
10. Refrain from psychoanalyzing the images to look for their deeper meaning – they do not yield productively to psychological interpretation. They are not the product of past trauma or unresolved feelings (Saks in Kiume, 2009).
11. Remind the experiencer that they have from the start had the wisdom to recognize that these visions are not real, though at first they may have had some doubts. When meeting moments where they may not be certain, examining the clarity and detail is often telling; hallucinations might be sharper than the person’s remaining eyesight allows (RNIB).
12. Since CBS episodes happen more often during “down time” than when the person is actively engaged in activities or with other people, decreasing their incidence may require finding ways to reduce social isolation, boredom, lack of stimulation, and low activity (Roberts, 2004; Murphy, 2012; Menon, Rahman, Menon, and Dutton, 2003).
13. Sometimes, eye exercises — such as looking from left to right without moving one’s head for 15 to 30 seconds — can help stop a hallucination.
14. Increased room lighting can sometimes prevent an episode of CBS visions if they commonly take place in low light (Murphy, 2012; RNIB).
15. Some report that stress and fatigue can exacerbate CBS. Reducing causes of and increasing coping skills around stress, and getting enough rest can sometimes help (RNIB).

While CBS can be frightening and stressful, there can also be positive outcomes. American author, humorist and cartoonist James Thurber lost vision in one eye as a child due to an accident. He reported many visions of strange things afterwards. It is suspected that he had CBS, and that these hallucinations fueled his amazing imagination. His hilarious stories and cartoons may have been a direct result of Charles Bonnet Syndrome (New World Encyclopedia).

References

Bellows, A. Chuck Bonnet and the Hallucinations. Retrieved September 5, 2012 from http://www.damninteresting.com.

Light House International. Charles Bonnet Syndrome. Retrieved September 5, 2012 from http://www.lighthouse.org/.

Menon, G., Rahman, I., Menon, S., and Dutton, G. (January-February 2003). Complex visual hallucinations in the visually impaired: the Charles Bonnet Syndrome, abstract. Surv Ophthalmol 48 (1): 58-72. Retrieved September 5, 2012 from http://www.pubmed.gov.

Murphy, C. When Seeing Isn’t Believing: Charles Bonnet Syndrome. (August 9, 2012) Scientific American. Retrieved on September 5, 2012 from http://www.scientificamerican.com/.

National Institutes of Health and the National Library of Medicine. Leading Causes of Blindness. NIH Medline Plus. Retrieved September 5, 2012 from http://www.nlm.nih.gov.

New World Encyclopedia. James Thurber. Retrieved September 5, 2012 from http://www.newworldencyclopedia.org/.

Royal National Institute of Blind People (RNIB). Retrieved on September 5, 2012 from http://www.rnib.org.uk/.

Saks, O., in Kiume, S. (2009). Seeing Hallucinations While Blind. Psych Central. Retrieved on September 4, 2012, from http://www.psychcentral.com.

Detailed hallucinations of unknown people, faces, buildings, cartoons, children and animals, patterns and designs the viewer knows aren’t real occur spontaneously in about one-third of people who develop low vision due to illness or injury, according to the Royal National Institute of Blind People.

Most people who experience such hallucinations think they have gone mad, because they don’t realize they are experiencing Charles Bonnet Syndrome (CBS). Often, patients remain silent and fearful about their symptoms, which can lead to much quiet suffering (Lighthouse International; Menon, Rahman, Menon, and Dutton 2003). This can develop into clinical depression or an anxiety disorder. Much of this suffering might be avoided if CBS were more widely known by the people most at risk for it and their care team members.

Named for the Swiss naturalist who first described it in 1780 (Bellows), CBS is not widely known. “Physician awareness and empathy are the cornerstones of management” for CBS (Menon, Rahman, Menon, and Dutton 2003). Sadly, too few medical professionals and most patients and their families have never heard of this syndrome, and even fewer know how to approach it with a likely-to-succeed approach. This two-part article will deal with education and empathetic management.

Why does it happen, this “phantom eye” phenomenon? One theory is that the brain is filling in information where there is none due to diminished vision. A parallel can be drawn to the neurological mixup that occurs with phantom limb. The syndrome results in sensation and pain as if a missing limb were still present.

An extension of this theory is offered on the website of the Royal National Institute of Blind People on their website:

Current research seems to suggest that, when you are seeing real things around you, the information received from your eyes actually stops the brain from creating its own pictures. When you lose your sight, however, your brain is not receiving as much information from your eyes as it used to. Your brain can sometimes fill in these gaps by releasing new fantasy pictures, patterns or old pictures that it has stored. When this occurs, you experience these images stored in your brain as hallucinations. CBS tends to begin in the weeks and months following a deterioration in your sight.

For more information about the possible biological mechanisms in CBS, see neurologist Oliver Saks’s informative and charming (though slightly controversial) talk explaining Charles Bonnet Syndrome neurology, which is linked here.

While the description “sees hallucinations” is accurate with CBS, it is not adequate to describe the full experience, nor is it sufficient to help differentiate CBS from other types of hallucinations. The following — especially taken together — are considered distinctive of Charles Bonnet Syndrome:

1. There is clear awareness by the viewer that the visions are not real, though initially he or she may second-guess that conclusion (Lighthouse International; Murphy, 2012; Menon, Rahman, Menon, and Dutton 2003).
2. The visions are not of recognizable people, places or events (RNIB).
3. There is no accompanying rich emotional or sensory experiences or memories other than the visual images (RNIB).
4. The viewer is not drawn into the hallucination and does not believe it to be real – there is a sense of detached watching, with the imagery lacking personal meaning.
5. The objects, people and animals may appear smaller or larger in scale than normal, or may appear normal-sized; seeing in miniature scale is also possible (RNIB).
6. The visions may interact and conform to actual surroundings; for example, people may enter through a door that is in reality present (RNIB).
7. The visions are detailed, clear, vivid, and complex, not vague or indistinct (RNIB; Bellows). Images are often much more clear than the person’s actual remaining vision allows them to perceive (RNIB).
8. Disembodied or distorted faces may be seen, as well as patterns, people, buildings, landscapes, cartoons, children and animals (RNIB; Saks in Kiume, 2009).
9. The visions are most likely to happen during “down” times as opposed to ones of active engagement (Lighthouse International; Murphy, 2012).
10. CBS usually lasts no more than 12-18 months (Lighthouse International; Murphy, 2012).
11. Anticonvulsants and haloperidol might be prescribed, as they reduce these episodes in some people (Menon, G., Rahman, I., Menon, S., and Dutton, G.; Roberts, 2004).

The second part of this article will focus on empathetically managing this syndrome, and ways that the stress and trauma of CBS can be reduced. Also included will be an exploration of ways some patients, their families and physicians have successfully interrupted or reduced these hallucinations.

References

Bellows, A. Chuck Bonnet and the Hallucinations. Retrieved September 5, 2012 from http://www.damninteresting.com.

Light House International. Charles Bonnet Syndrome. Retrieved September 5, 2012 from http://www.lighthouse.org/.

Menon, G., Rahman, I., Menon, S., and Dutton, G. (January-February 2003). Complex visual hallucinations in the visually impaired: the Charles Bonnet Syndrome, abstract. Surv Ophthalmol 48 (1): 58-72. Retrieved September 5, 2012 from http://www.pubmed.gov.

Murphy, C. When Seeing Isn’t Believing: Charles Bonnet Syndrome. (August 9, 2012) Scientific American. Retrieved on September 5, 2012 from http://www.scientificamerican.com/.

Royal National Institute of Blind People (RNIB). Retrieved on September 5, 2012 from http://www.rnib.org.uk/.

Roberts, D. Charles Bonnet Syndrome (CBS). (September, 2004). MD Support. Retrieved on September 5, 2012 from http://mdsupport.org.

Saks, O., in Kiume, S. (2009). Seeing Hallucinations While Blind. Psych Central. Retrieved on September 4, 2012, from http://www.psychcentral.com.

As heart failure has been linked to depression and cognitive impairment, Professor Osvaldo Almeida of the University of Western Australia, and colleagues investigated whether this is specifically due to the heart failure itself, or one of its causal factors.

They analysed data on 35 heart failure patients, 56 ischemic heart disease patients without heart failure, and 64 healthy people with neither condition. All were aged 45 years or above and had no obvious cognitive impairment. Magnetic resonance imaging (MRI) scans of the participants’ brains were assessed.

This is the first study of cognitive changes in heart failure to include patients with ischemic heart disease.

Participants with heart failure had a lower volume of grey matter in many areas of the brain than the other two groups. These patients also had lower scores on short- and long-term memory, had longer reaction speeds, and took longer to complete a reasoning task.

Professor Almeida explains, “What we found in this study is that both ischemic heart disease and heart failure are associated with a loss of cells in certain brain regions that are important for the modulation of emotions and mental activity. Such a loss is more pronounced in people with heart failure. Health professionals and patients need to be aware that problems caused by heart disease are not limited to the heart.”

In their paper, the researchers conclude, “Adults with heart failure have worse immediate and long-term memory and psychomotor speed than controls without ischemic heart disease.”

This could make it more difficult for patients to comply with complicated treatment regimes, they warn, stating, “Our findings are consistent with the possibility that patients with heart failure may have trouble following complex management strategies, and, therefore, treatment messages should be simple and clear.”

They add that further studies will have to be done to uncover the process by which heart failure leads to loss of brain cells, to see whether the problems become worse over time, and to discover whether patients could benefit from cognitive rehabilitation.

Natasha Stewart of the British Heart Foundation commented: “Heart failure can affect people in very different ways. More research is needed to confirm the effect on mental processes, so that treatment can be targeted to look after patients in the best possible way.

“The biggest implication of this research is that patients may find it difficult to stick to treatment regimes and forget to take their medication. It is important to speak to your doctor about what is best for you. Together you can find a way to make your meds a part of your daily routine so that they are less easily forgotten.”

Responding to the study, Dr. Christiane Angermann and colleagues at the University of Wurzburg, Germany, say that links between cardiovascular disease and dementia have been observed for decades. In fact, the label “cardiogenic dementia” was first used in 1977.

Smaller studies on humans have investigated the issue, with inconsistent results. A few animal studies have also been carried out, and these studies showed changes to the brain after a heart attack.

Another potential cognitive problem among heart failure patients is an inability to decide what to do if their condition changes. For example, a patient who has a cognitive problem and experiences sudden weight gain may not think to notify their physician. Their condition could worsen over time, resulting in an avoidable trip to the emergency room.

Richard S. Isaacson, MD, a neurologist at the University of Miami School of Medicine, recommends that patients bring a family member or caregiver to doctor appointments to help understand the treatment regime and the importance of taking medication consistently.

“People with heart failure are going to have trouble understanding because their thinking skills are not as strong as they used to be,” Isaacson says. “They often have multiple medical problems and difficulty understanding what they can do to help themselves.”

He supports the use of handouts to explain heart failure and its treatments, to help remind patients of what they need to do and why.

References

Cognitive and brain changes associated with ischaemic heart disease and heart failure. Almeida, O. P. et al. The European Heart Journal, February 1, 2012. doi:10.1093/eurheartj/ehr467

Cognition matters in cardiovascular disease and heart failure. Angermann, C. E., Frey, A.. and Ertl, G. The European Heart Journal May 29, 2012 doi:10.1093/eurheartj/ehs128

Alzheimer’s disease accounts for most cases of dementia worldwide. Its development may start up to 20 years before symptoms appear. The so-called amyloid plaques which form in the brains of people with Alzheimer’s disease contain substances known as beta-amyloid and tangles made of tau proteins.

The team followed 137 patients with mild cognitive impairment for about nine years. At the start of the study, all patients underwent lumbar puncture, in order to collect a sample of cerebrospinal fluid. During the nine years of the study, 54 percent developed Alzheimer’s disease. Sixteen percent developed other forms of dementia.

Patients’ levels of beta-amyloid 1-42, T-tau and P-tau were measured at the study’s start. Those who went on to develop Alzheimer’s disease had reduced levels of beta-amyloid 1-42 five to 10 years in advance of the disease. Raised levels of the other spinal fluids seemed to be associated with the disease, but the link occurred later on.

Findings appear in the January 2012 issue of Archives of General Psychiatry. The authors predict that:

Approximately 90 percent of patients with mild cognitive impairment and pathologic [disease-indicating] cerebrospinal fluid biomarkers will develop Alzheimer’s disease within 9.2 years. Therefore, these markers can identify individuals at high risk for future Alzheimer’s disease least five to ten years before conversion to dementia.

In conclusion, the cerebrospinal fluid levels of tau and beta-amyloid seem to be substantially altered very early in the disease process of Alzheimer’s disease.

Hopefully, new therapies that can retard or even halt progression of the disease will soon be available. Together with an early and accurate diagnosis, such therapies could be initiated before neuronal degeneration is too widespread and patients are already demented.”

They say these results support the theory that beta-amyloid metabolism is altered before the brain begins to degenerate. This may help to shape future research studies. Furthermore, once Alzheimer’s disease symptoms begin, a patient’s beta-amyloid and tau levels in their cerebrospinal fluid stay relatively constant, so might serve as markers for the efficiency of treatment, the researchers add.

But other researchers believe that, by the time the clinical symptoms of Alzheimer’s disease appear, so much neurodegeneration has occurred that disease-modifying therapy may not be effective.

This is why it is so important the underlying pathology is better understood, possibly by measuring cerebrospinal fluid levels. Experts led by Dr. Niklas Mattsson of the University of Gothenburg, Sweden, looked at this question in a large study of 750 adults with mild cognitive impairment, 529 with Alzheimer’s disease, and 304 healthy adults.

They found that, over two years, levels of beta-amyloid, T-tau, and P-tau predicted patient outcomes, suggesting that these markers “may be useful in identifying patients for clinical trials and possibly screening tests in memory clinics.”

This group of investigators has been studying these issues for several years, and their study has been described as “a tour de force” of clinical and laboratory data collections. The markers are now confirmed as being useful indicators for Alzheimer’s disease.

But Ronald C. Petersen, professor of neurology at the Mayo Clinic in Rochester, Minn., who is involved with the Study of Aging, says “it is premature to recommend application of these techniques in clinical practice.” He believes that “significant refinement of the testing procedures is necessary before these techniques can be recommended for general clinical use.”

Efforts in this direction are under way in a study based at 57 centers in the U.S. and Canada which was designed to look at biomarkers for predicting Alzheimer’s disease. A major focus of the study is to decide on standard, reliable clinical, neuroimaging and laboratory procedures.

But Prof. Petersen says, “Of critical importance, however, is what the clinician and patient will do with such results. Alzheimer disease has no treatment to prevent or alter the course of the disease, so making the diagnosis with good accuracy may aid in planning but also could be devastating news for some patients and families.

“Furthermore, false positives and false negatives occur as with any screening test. However, as biomarkers become more sophisticated, they are likely to take on an increasingly important role in the diagnosis and management of Alzheimer disease.”

References

Cerebrospinal Fluid Levels of Beta-Amyloid 1-42, but Not of Tau, Are Fully Changed Already 5 to 10 Years Before the Onset of Alzheimer Dementia. Buchhave, P. et al. Archives of General Psychiatry January 2012 Vol. 69 No. 1 pp. 98-106. doi:10.1001/archgenpsychiatry.2011.155

CSF biomarkers and incipient Alzheimer disease in patients with mild cognitive impairment. Mattsson, N. et al. The Journal of the American Medical Association July 22, 2009 Vol. 302 No. 4 pp. 385-93.
http://jama.jamanetwork.com/article.aspx?articleid=184311

Use of Alzheimer disease biomarkers: potentially yes for clinical trials but not yet for clinical practice. Petersen, R. C. and Trojanowski, J. Q. The Journal of the American Medical Association July 22, 2009 Vol. 302 No. 4 pp. 436-37. doi: 10.1001/jama.2009.1073

If, in the world of a person with Alzheimer’s Disease or a related dementia (ADRD), she is 8 years old (not 80), and waiting for Mother to pick her up after school to go home and milk the cows, then that is the world to which care partners must travel. It doesn’t matter a bit that Mother died 50 years ago because that is not true in the reality where the person with dementia is living.

There are millions of people with ADRD living in the world today. Most of them are not being cared for using Habilitation Therapy, the comprehensive approach that the Alzheimer’s Association now considers to be a best practice. Instead, many dementia patients are cared for using the outdated but still widespread “Reality Therapy.” Someone using Reality Therapy would tell the person with dementia that she is 80, not 8, and that her mother died decades ago. Reality Therapy says that we must insist that the patient accept these facts in order to pull them back into our world.

Reality Therapy is logical and instinctual. The thinking is that things would be all right if only the person with dementia could get the facts straight. However, for Reality Therapy to work, people with dementia need to have fully functioning memories — which is exactly what they have lost. (Moore, 2010, Alzheimer’s Association, 2011, n.d., Snow, n.d.)

Tell a dementia patient that her mother has died, and one of two paths will unfold, both with the same outcome. Either she will deny that Mother is dead (“I just saw her this morning before school, and she was fine!”), or she will believe it to be true, grieving and in shock as she takes in the news for the first time. In either case, there will be high emotional turmoil. Soon, she will entirely forget the incident, though she will still carry with her a feeling of great upset. Later, she will again be 8 years old, waiting for Mother to pick her up after school. Repeated applications of Reality Therapy end no differently. This is why it is now considered ineffective and unintentionally cruel to all involved.

So what should care partners do instead? Habilitation Therapy gives the highest value to the emotional well-being of the person with dementia. (Alzheimer’s Association, n.d., p. 66) HT also leads us to ask: is it really a problem that sometimes this woman with ADRD believes sometimes that she is 8 years old and that her mother is just about to arrive? (Alzheimer’s Association, 2011) What if we didn’t try to correct these errors? Wouldn’t that allow care partners to help preserve her emotional well-being, dignity and calm?

Not attempting to drag the dementia patient out of their reality can be the most difficult aspect of Habilitation Therapy for many care partners. It requires them to knowingly accept what is not “true,” and sometimes even to actively tell lies — which in HT are called “therapeutic fiblets.” (Alzheimer’s Association, 2011, Moore, 2010) To do so goes against all training to always tell the truth — especially to one’s elders.

Do they really need to fib and let untruths stand unchallenged? Yes. Sometimes this is truly the wisest path. Fiblets are not told to mock the person with dementia, hurt their feelings, or exploit their weaknesses. Fiblets are best understood to honor what might be considered higher truths. These truths are that it is most vital to give any person with dementia a high-quality life where they are safe, comfortable, and can live with intact dignity and positive experiences. (Alzheimer’s Association, 2011) Being constantly corrected causes people with ADRD to feel disrespected, stupid, angry, confused, frustrated, sad and hurt. If challenging their mistaken ideas is both ineffective and destroys their dignity, then this habit needs to be stopped. (Snow, n.d.)

Typically important information about unmet needs is buried in dementia patients’ mistaken information. (Moore, 2010, Alzheimer’s Association, 2011) Take our example of the 80-year-old woman who believes she is 8 and waiting for her mother after school: She is making an important communication about how she feels and what she needs. This is information that, when decoded and used strategically, can help prevent difficult behaviors, and allow her to function at her best.

To decode this information, care partners need to know something about her life. In this example, it turns out that going home after school at age 8 to milk the cows made her feel she was fulfilling an important, grown-up function in her family. Connecting with and living in that time in her life may be the only way she can still communicate today how she feels and what she needs.

Care partners should consider this “meaningless” information to be an important metaphor for her life today. She might be saying, “I want to feel useful again,” “I am afraid I don’t have a purpose anymore,” or “I miss the feeling of working with others toward a common goal.” It could be that focusing her on simple, repetitive tasks around the house and praising her for her helpfulness would work toward satisfying these emotions. This is vital, because if care partners do not find safe and possible ways for unmet needs to be satisfied, the needs do not simply go away. Instead, they continually re-emerge and may eventually assert themselves with force in the form of anxiety, depression, withdrawal, rage, or other painful and difficult behaviors. (Snow, n.d.)

Therefore, an appropriate response in this example might be to tell the woman something like: “I got a phone call from your mother a little while ago, and she said she was going to be late. Why don’t we go and have a cup of tea and wait for her together? And you can tell me all about your life on the farm. Was it hard to learn how to milk?….” As a result, the woman gets to revisit and feel proud of her usefulness on the family farm. She is received by a caring listener, and can enjoy sharing a time that is still fairly clear in her memory. In the process, her troubled feelings may pass as her immediate emotional needs are met. It is likely that soon she will forget that she is 8, and waiting for her mother to arrive.

However, unless her ongoing needs for feeling purposeful are met, soon she will reconnect to that time in her history when she most felt useful. But if her care partners understand and use Habilitation Therapy, they will already know the drill. They can quickly decode what she is feeling, and move right into addressing her emotional needs. They will meet her in her world, and help her experience the kind of positive emotional state that lives at the very heart of Habilitation Therapy.

References

Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (n.d.) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum. Watertown, MA: Alzheimer’s Association.

Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (August 2, 2011) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum [Training Course]. Lawrence, MA: Alzheimer’s Association.

Alzheimer’s Association. (2011b). 2011 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia, Volume 7, Issue 2.

Moore, B. L. (2009) Matters of the Mind and the Heart: Meeting the Challenges of Alzheimer Care. New York: Strategic Book Publishing.

Moore, B. L. (November 20, 2010) StilMee™ Certification for Professionals: Working respectfully and effectively with people with Memory Loss [Training Course] Burlington, MA.

Snow, T. (n.d.) The Art of Caregiving. [Video] Florida: Pines Education Institute of Southwest Florida.

But that’s not necessarily true if someone has Alzheimer’s Disease — they may only see the white table. Though it is not widely recognized, it is a fact that people with several types of dementia (but especially Alzheimer’s Disease) experience significant changes in the way their brains take in and interpret visual information, generally unconnected to eye health and function. These changes follow several predictable patterns that powerfully influence the behavior of people with dementia.

In this, Part 3 of a series of articles on Habilitation Therapy (HT) for Alzheimer’s Disease and other dementias (ADRD), we focus on how this loss of function in the visual cortex of the brain helps us better understand a person with dementia. HT focuses on helping dementia patients function at the best of their still-present abilities, instead of trying to return lost functioning to them. (It is Rehabilitation Therapy that returns lost functioning; regaining former abilities is not known to be possible with ADRD.) (Alzheimer’s Association, 2011) Habilitation Therapy can be applied with enormous effectiveness to the difficulties that arise from these changes in visual processing.

In HT, care partners do their best to enter into the dementia patient’s reality, and to see the world through their eyes. (Alzheimer’s Association, n.d., p. 138) When it comes to vision and dementia, this is quite literal: we must understand visual processing changes to help the patient’s functioning and reduce or eliminate difficult behaviors.

Seven Types of Major Visual Changes

1. Inability to perceive dimensionality. People with Alzheimer’s Disease lose the ability to see and judge depth correctly. A light fixture flush with a nine-foot-high ceiling may seem to them to be reachable while standing on the floor, no stepstool needed. A stripe of black linoleum visible around the edges of a light carpet can be interpreted to be a bottomless pit they must not fall into.
2. Shrinking peripheral vision. By mid-disease, Alzheimer’s patients have the equivalent of tunnel vision. Occupational therapist and dementia expert Teepa Snow suggests we can experience how limited a view this is by using “binoculars” like a child would create with his or her hands. Do this by loosely circling fingers to make two tunnels through which to peer. By putting the circled fingers to our eyes like binoculars, we get a good estimation of this limited view; the field of vision is about 12” in diameter in all directions. (Snow, n.d.) This means the Alzheimer’s patient cannot see something unless it is directly in front of them at just about eye level.
3. High color contrast. Go back to the example at the beginning of this article: a clear glass filled with milk on a white table. Alzheimer’s patients need high contrast to discern one object from another. They may not notice a glass of milk on a table unless the table and milk are distinctly different colors – for example, chocolate milk on a white table would be easier to see.
4. Need for brighter lighting. Normal aging brings about the need for brighter lighting for most people. Enhanced lighting is even more imperative for people with Alzheimer’s. Dr. Paul Raia, one of the founders of HT, recommends significantly increasing the intensity of normal household lighting from 30-foot-candle power, to 60- or 70-foot-candle power. (Raia, 2011, p. 2)
5. Trouble with glare and shadows. “Sundowning” – the exacerbation of difficult behaviors as sunset approaches – is not well understood, but is not uncommon in dementia. One theory is that glare and lengthening shadows caused by the sun’s lower angle might be confusing to people with dementia. Pulling shades or curtains and providing steady, bright lighting for some people can be helpful to avoid or diminish such episodes. (Raia, 2011, p. 2)
6. Need for greater simplicity. Visual complexity can be difficult for the dementia patient to interpret. For example, multiple overlapping visual patterns can become a swirl of confusion. The same goes for the normal clutter in so many homes. Such visual “noise” makes it difficult for the dementia patient to organize their thinking and activities, thereby reducing their ability to function.
7. Right eye preference. In some types of dementia, the brain may stop or reduce processing information taken in by the left eye. This is why some dementia patients may, for example, say that they are hungry when the left side of their dinner plate still contains more food. (Snow, n.d.)

Knowing now about these significant changes people with dementia experience in their ability to see and understand what they see, it is easy to understand how they struggle to get through each day. There is much confusing or missing information about their immediate environment – information they previously had. Because their cognition and judgement also are damaged, it may be impossible to teach dementia patients strategies for operating with confused and diminished vision. Their resulting difficult behavior might be considered a fully normal reaction to a highly abnormal situation.

People with dementia cannot leave the reality they live in; care partners must join them there. Yet, most family and caregivers do not know about the profound and sweeping changes in visual perception that happen in people with dementia. Even though Alzheimer’s is the most commonly diagnosed type of dementia, and its visual changes are highly common, they remain one of its biggest secrets. (Alzheimer’s Association, 2011b)

By understanding and anticipating the vision changes experienced by people with Alzheimer’s, Habilitation Therapy can help care partners make simple, effective adaptations to the physical environment. These changes are all intended to enhance the patient’s ability to function more independently, which has an enormous positive impact on everyone’s emotional well-being.

References

Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (n.d.) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum. Watertown, MA: Alzheimer’s Association.

Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (August 2, 2011) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum [Training Course]. Lawrence, MA: Alzheimer’s Association.

Alzheimer’s Association. (2011b). 2011 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia, Volume 7, Issue 2.

Raia, P. (Fall, 2011) Habilitation Therapy in Dementia Care. Age in Action. Vol. 25, No. 4.

Snow, T. (n.d) The Art of Caregiving. [Video] Florida: Pines Education Institute of Southwest Florida.

One of Habilitation Therapy’s primary goals is to create day-long positive emotional states for dementia patients (Alzheimer’s Association). His or her capabilities, independence and morale are thoughtfully and ongoingly engaged to produce a state of psychological well-being.

Why such an enormous focus on emotions? Given all the many deteriorating capabilities of dementia, why not instead focus on helping memory, reasoning, language, and other functionality that adults need in order to cope in the world?

It’s vital to remember that Habilitation Therapy is not Rehabilitation Therapy. Rehabilitation returns people to earlier, higher levels of functioning; such recovery simply is not possible with ADRD. Habilitation helps dementia patients use what functioning they still have at a more optimized level.

So, what do dementia patients have left, especially as their disease progresses? The ability to experience and maintain emotions, as well as to accurately perceive others’ emotions, remains intact right up until nearly the end. They can also consistently associate positive or negative emotional states with certain people, places or things.

Since HT works only with functionality that is still present, the emotional world is the strongest channel through which to impact a dementia patient. Taking the time to consistently create positive emotional states can reduce difficult behaviors, allow enjoyment – or at least better toleration – of care tasks. In this way, Habilitation Therapy can trigger states of calm, happiness, pleasure and self-esteem.

While it may be difficult or impossible for a person with dementia to understand a broader context for what triggers their feelings, they will consistently know that it feels bad to be scared, and good to laugh. They can also retain a feeling over time, though they may not recall what that feeling was originally about. In this way, a positive feeling can persist and help set the stage for “a good day.” The converse is also true; a negative feeling can be the precursor to “a bad day.”

Trying hard to figure their way through an increasingly bewildering world, people with dementia often become amazingly good at reading and responding to others’ emotional states. Care partners’ body language, facial expressions, and tone of voice add up to a strong message clearly received — often despite what is said in words. This is especially true as the patient’s spoken language capabilities deteriorate. Presented with subtle indications that something is positive, the dementia patient’s emotional radar tells them all is well. If they pick up something that says the contrary, they can become quite upset, though having no clue about what is actually going on.

As long as these visual processing changes remain little known — coupled with the decaying judgment and cognitive abilities typical in dementia — navigating ADRD will remain unnecessarily painful and difficult for both care partners and patients alike. However, once understood through the lens of Habilitation Therapy, such knowledge becomes a powerful tool to improve safety, functioning, relationships, and general quality of life for everyone involved with a person with dementia.

Habilitation Therapy (HT) is a comprehensive behavioral approach to caring for people with dementia. It focuses not on what the person has lost due to their illness, but on their remaining abilities. HT creates and maintains positive emotional states in the person with dementia through the course of each day. It is considered by the Alzheimer’s Association to be a best practice for taking care of ADRD patients. (Alzheimer’s Association, 2011) Fairly simple to understand, HT can be profound in its positive impact on dementia patients and their care partners.

HT maintains that people with dementia cannot leave the reality they inhabit — care partners must meet them in that world. (Alzheimer’s Association, n.d., p. 139) This means that family and other caregivers must imagine what it is like to experience visual processing as a person with ADRD does. It is only then that the underlying causes of difficult behaviors can be understood, and methods to prevent or limit them can be developed. For example, these might include providing additional visual cues, or clarifying or eliminating confusing ones.

In general, “less is more” in the space occupied by an ADRD patient, allowing them to function better with less confusion and distraction. Organizing clutter and reducing the number of objects in a room can help them be more independent for longer. Feeling more self-sufficient improves the ADRD patient’s feelings about him- or herself, and makes life easier for care partners, too. (Alzheimer’s Association, 2011)

Changes to the Environment for Someone With Alzheimer’s

While vigilance must be maintained and approaches honed as the disease progresses, simple but vital changes to the dementia patient’s environment can make a real difference in quality of life, safety and ability to function more independently. Applying our understanding of what isn’t working right in the visual cortex of the ADRD brain is central to creating the right interventions.

Here follow some concrete examples.

Wandering. Wandering is when a person with dementia leaves a safe place where they are supposed to be, to strike out for… well, it’s sometimes hard to say where they believe they are going. They can quickly become lost and unable to return to safety; they can even die of dehydration or hypothermia. Due to confusion and panic, they may also assault someone who unwittingly frightens them. Wandering is a problem to be taken very seriously.

Due to their inability to perceive depth or dimensionality, Habilitation Therapy will use this knowledge to reduce or stop wandering behavior. When a large black floor mat is placed in front of every exit accessible to people with ADRD, often their brain interprets the mat as a bottomless pit that must be avoided. Of their own accord, they may lose interest in the doors.

People with dementia need highly contrasting colors to pick out different objects. Painting an exit door, doorknob and its surrounding wall and trim all the same color can make an exit disappear for a person with ADRD. Installing floor-to-doortop drapes on the windows – as well as over an exit door – and keeping the drapes shut can make the door seem like it’s just another window. This, too, can eliminate wandering. (Moore, 2010)

Where did I last lay down my car keys? What did I need at the grocery store, now that I’m standing in its aisles? What day is that important meeting scheduled? What did I need to bring to it? Did I remember to switch the clothes from the washer to the dryer before they got moldy? Did I pick up new printer cartridges, or did I just think about getting them?

We middle-aged people caring for parents, children, spouses, paid work, personal projects, volunteer work — and somehow squeezing in a little time for ourselves — often become forgetful and distracted. When this happens, many of us worry that we are acting a lot like elders we know who have been diagnosed with Alzheimer’s Disease and related dementias.

We wonder: do we have it, too? (Alzheimer’s Association, n.d.)

Well, maybe. There are early-onset cases of dementia involving people in their 40s, 50s and 60s. But this is not usually the cause of such forgetfulness. We likely have so much on our plates, as we spin ever faster through our lives, that we simply cannot retrieve all the information we want when we need it. But still, we wonder: are we experiencing “normal” forgetfulness?

We may also wonder about our elder parents, friends, co-workers, spouses or other aging loved ones. Should we be concerned about certain behaviors we notice? How do you tell the difference between symptoms of dementia and the forgetfulness that comes with everyday functioning as we age?

Below are seven signs that you’re just fine. Consult your physician if you’re still worried, or if you feel these signs point to something abnormal.

1. Remembering later. You’ve forgotten a name, a word, or part of experience. Fifteen minutes later — either spontaneously or after thinking it over — it comes back. That’s “normal” forgetfulness. Not being able to remember an experience, name or word — or even a person or place that should be familiar — is not “normal” forgetfulness. (Alzheimer’s Association, n.d.).
2. Reminders work. Being able to reconnect to a name, word or experience after someone or something reminds you points to “normal” forgetfulness. The reminder can be anything: it can be visual, a word or phrase, a story, and so on. Reminding might not help memory recall in cases where forgetfulness is not “normal;” the information may remain missing. (Alzheimer’s Association, 2011).
3. Using tools to remember. Being able to effectively use tools such as notes or a calendar to compensate for forgetting leans toward “normal” forgetfulness. Decaying or missing ability to accurately check a calendar or notes to aid memory is not “normal” forgetfulness. (Alzheimer’s Association, 2011).
4. Forgetting once or twice. After forgetting a piece of information, then remembering or being successfully reminded, it should be more easily retrievable again later in cases of “normal” forgetfulness. Forgetting again later, especially if it is complex, likely also is “normal.” But repeatedly forgetting the same thing, or never being able to recall anything about the subject is not an indication of “normal” forgetfulness. (Alzheimer’s Association, 2011).
5. Too many balls in the air. Memory problems that come about when trying to do too many things at once – or at times of high stress or great fatigue – is probably “normal” forgetfulness. Diminished ability to remember how to do normal tasks, or an inability to figure out the sequence used in normal, daily tasks, is not “normal” forgetfulness. (Alzheimer’s Association, n.d.).
6. Acting otherwise typically. Feeling frustrated with forgetting, but exhibiting the usual personality and behavior while responding to such challenges, points to “normal” forgetfulness. Uncharacteristic anger, defensiveness, denial, or changes in personality, reduced problem-solving ability or deteriorating judgment may indicate that the memory problem is not “normal.” (Moore, 2009)
7. Doing self-care. Being forgetful, but still able to consistently perform basic needs such as bathing, dressing, and eating is “normal” forgetfulness. Uncharacteristically poor hygiene, unchanged or soiled clothing, weight loss due to forgetting to eat – or weight gain due to eating a meal multiple times having forgotten previous one(s) just consumed – are not indications of “normal” forgetfulness. (Alzheimer’s Association, n.d.)

Abnormal forgetfulness isn’t only about failing to remember. It’s more complex than that. Be concerned when you see a pattern of deteriorating functioning, not just correctable incidents of forgetting. Loss of previous abilities or negative changes in long-established, characteristic behavior and personality patterns indicates a need to seek help.

Understanding normal forgetfulness can help us more gracefully adjust to the challenges of healthy aging. We need to give ourselves and our loved ones more time to recall events, names, and words as we age, because “normal” recall can take longer. Knowing that can help us plan to build in extra time for certain events or tasks.

Fatigue and stress are great memory stealers regardless of whether dementia is involved. Insomniac dementia patients or those exhausted by anxiety will function more poorly. Many younger people who care for aging loved ones exhibit memory slips that parallel their exhaustion level.

At that point caregivers often start worrying that they, too, are developing what their parent has. It seems so eerily familiar that they often say it’s as if dementia is contagious. Though there is a genetic component to some dementias, it’s more likely that anyone acting as a primary caregiver to a person with dementia is experiencing “normal,” overwhelmed, fatigued, stressed-out, not-enough-hours-in-the-day forgetfulness. Hopefully, this offers some solace to the weary.

References

Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (n.d.) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum. (Watertown, MA). p. 68

Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (August 2, 2011) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum [Training Course]. (Lawrence, MA)

Moore, B. L. (2009) Matters of the Mind and the Heart: Meeting the Challenges of Alzheimer Care. New York: Strategic Book Publishing.

According to Silverman, Flaherty and Tobin (2006), …”[I]t is a better understanding of the psychology of dementia – how a person thinks, feels, communicates, compensates, and responds to change, to emotion, to love – which may bring some of the biggest breakthroughs in treatment….”

A parent, sibling or spouse has been just diagnosed with Alzheimer’s Disease or a related dementia (ADRD). In a somewhat perfect world, family members would receive an orientation to the disease, and learn how it affects their loved one’s behavior. They would quickly begin to learn how to deliver daily care and maintain best function. They would find out how to prevent many common, difficult behaviors, and address those that arise with some consistently applied, fairly easy-to-use psychosocial interventions.

The entire family and all other members of the care team in this somewhat perfect world would receive training and ongoing support to learn and apply Habilitation Therapy (HT), accepted as the best standard of care and psychosocial intervention by the Alzheimer’s Association (Massachusetts/New Hampshire Chapter), where it was first developed in the 1990s. (Alzheimer’s Association, Massachusetts/New Hampshire Chapter, 2011.) HT is considered the best practice in ADRD day-to-day care, in creating good environments for ADRD patients, and within all their relationships and activities. Though powerful and effective, HT is fairly simple to learn; even a child can understand and apply aspects of it.

So, what is this seemingly magical thing called Habilitation Therapy? Well, it’s not magic, but a comprehensive behavioral approach to caring for people with dementia. It focuses not on what the person has lost due to the illness, but on his or her remaining abilities. HT creates and maintains positive emotional states through the course of each day. The dementia patient’s capabilities, independence and morale are consistently engaged to produce a state of psychological well-being. In this way, difficult symptoms can be reduced or eliminated, even as the illness progresses.

Habilitation Therapy also benefits the patient’s family, friends and professional caregivers. The ability to enjoy time together and to share a relationship, activities, and feelings with a person with dementia can be uplifting for everyone involved. HT can reduce much of the stress and workload involved in living with Alzheimer’s Disease and other related dementias.

Note that this is “Habilitation Therapy,” not “Rehabilitation Therapy” (Alzheimer’s Association, Massachusetts/New Hampshire Chapter.) Rehabilitation returns patients to earlier, higher levels of functioning. There is no known rehabilitation for ADRD. Habilitation focuses on optimizing and extending what is possible now, not what was possible in the past.

The very best natural caregivers tend to spontaneously develop similar approaches to HT. Usually, though, they are unable to articulate why they do what they do, teach others except through example, or discover by themselves the totality of what Habilitation could teach. It can take months or years for talented caregivers to uncover just some of the techniques that could have been taught to them in a few hours through Habilitation Therapy training. Though it makes logical sense to provide such training on a regular, widespread basis, it is far from the norm.

A deeper understanding of Habilitation Therapy starts by looking at the way the brain is affected through dementia, and how large a presence emotions represent. This will be explored further in Part 2.

In this somewhat perfect world, medications such as antipsychotics would not be needed to manage the illness’s behaviors. (An antidepressant might be prescribed to help support positive mood and functioning, however.) Special dementia-specific behavioral methods — plus interventions such as gentle massage, music and art therapy, and wellness activities — would help the dementia patient be peaceful and happy, functioning best with what abilities still remain even as they decline. Caregivers (called “care partners”) would be happier and more peaceful, too.

People with ADRD living in this somewhat perfect world would be able to maintain as much independence as they safely could through an appropriately organized physical environment. Daily, they would experience a variety of emotions, including feeling safe, cared about, respected, purposeful and valued. Such positive emotional experiences bring them pleasure, comfort, laughter, happiness and even joy.

Nearly to the very end, they would share positive relationships and emotional experiences with their care partners – both family and professional – who experience time spent together as a close and profound (though not necessarily easy) experience. Most ADRD patients would live their final days in their homes, or would be stay living at home significantly longer due to this type of compassionate daily care. (Mittleman, Ferris, Shulman, Steinberg, and Levin, XXXX.) If and when they found themselves living in a facility, the entire staff, from janitors to nurses to administrative staff, would be fluent in the use of Habilitation Therapy.

Even in this somewhat perfect world, there would still be many, many tasks for care partners to perform every day. There would still be an emotional, physical and financial cost to delivering all the care necessary. The disease would still remain progressive, and the patient would continue to decline. Family and friends would still grieve as their loved one with dementia became more and more dependent and eventually died. But grief and loss would not be the only feelings those left behind would hold in their hearts and memories. There would be the close, enjoyable times that existed through much of the course of the disease.

This somewhat perfect world already exists in small pockets. A good or better quality of life could exist right now for many, many ADRD patients, their families, friends, and professional caregivers. One of the huge missing factors for the further manifestation of this somewhat perfect world is a lack of widespread awareness, training and adoption of Habilitation Therapy.

References

Silverman, N. M., Flaherty, G., Tobin, T. S. (March 2006). Dementia And Wandering Behavior: Concern for the Lost Elder. New York: Springer, p. 24.

Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (August 2, 2011.) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum [Training Course]. (Lawrence, MA)

Mittelman M.S., Ferris S.H., Shulman E., Steinberg G., Levin B. (1996). “A family intervention to delay nursing home placement of patients with Alzheimer disease. A randomized controlled trial.” Journal of the American Medical Association. Dec 4; 276(21):1725-31.

Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (n.d.) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum. (Watertown, MA). p. 62.

Dr. Chris Fox of the University of East Anglia, UK, and colleagues found that anticholinergic drugs — which block a key neurotransmitter called acetylcholine and include many drugs often taken by older adults — may cause cognitive impairment.

Drugs which have anticholinergic activity range from antidepressants to antihistamines. They include Benadryl, Dramamine, Excedrin PM, Nytol, Sominex, Tylenol PM, and Unisom. Others available only by prescription include Paxil, Detrol, Demerol and Elavil. Older people are more at risk because they tend to be greater users of these drugs.

Now, the research team has looked in detail at these drugs’ effects on people already suffering from dementia. They studied 224 people with established Alzheimer’s disease who were taking low levels of anticholinergic drugs. The majority (71 percent) were women, and their mean age was 81 years.

The participants’ cognitive function was remeasured six and 18 months into the study using the Mini-Mental State Exam, the Severe Impairment Battery (which assesses specific behavioral and cognitive deficits associated with severe dementia), and the cognitive section of the Alzheimer’s Disease Assessment Battery. Their exposure to anticholinergic drugs also was recorded.

No differences were seen in cognitive functioning for individuals with high or low exposure to anticholinergic drugs at either six or 18 months, once cognitive function at the start was taken into account.

“Medications with anticholinergic effect in patients with Alzheimer’s disease were not found to effect deterioration in cognition,” the researchers reported.

“Our study did not support a continuing effect of these medications on people with Alzheimer’s disease who are established on them.”

Dr. Fox commented: “We found that taking a low dose of medication with a low degree of anticholinergic activity does not appear to lead to more impaired cognition or a more rapid cognitive decline in people with dementia. We hope that this will provide some reassurance to families and carers of those with dementia.”

But he added that the team is still concerned about the impact on frail older people who have no signs or mild signs of impaired cognition before they start to take the drugs. “More work is needed in this area,” he states. “In addition, we need studies on mortality in the more advanced dementia with these medicines.”

Co-author Dr. Ian Maidment of Kent University, UK, added: “One possible explanation for the different results is that in people with dementia, their cholinergic system is already impaired and therefore introducing a further insult to the cholinergic system has little effect. These results do, however, highlight the complexity of the issue and the need for further in-depth research.”

Future research also needs to assess the impact of medication doses, say the experts. The study is published in the journal Age and Ageing.

In a 2012 review of the effect of anticholinergic drugs on cognitive decline, several of the same authors explain that Alzheimer’s disease “is characterized by a cholinergic deficit in the basal forebrain.” They write that there is increasing evidence that this brain area is already affected prior to dementia, early in the course of Alzheimer’s disease.

This loss of cholinergic activity may be a crucial component since it is associated with cognitive impairment and behavioral changes in many types of dementia, they explain. And anticholinergic drugs may exacerbate the process. For example, an increase in plaque density has been observed in Parkinson’s patients treated with anticholinergics.

“The most important clinical issue,” they warn, “is that a high proportion of the older population are exposed to multiple drugs with low anticholinergic activity, and the cumulative burden of these medications over many years may be associated with accelerated cognitive decline.”

Clinicians should consider, as part of every older person’s medication review, whether each medication is necessary and whether it could and should be stopped, recommend the experts.

“One caveat to this is that people with established Alzheimer’s disease may be stable on their current medication and not exhibit, paradoxically, any medication-related decline in cognition, as the damage to their cholinergic systems has already occurred,” explain the authors, referring to their previous study. “These patients may be able to tolerate a relatively large anticholinergic load.

References

Fox, C. et al. The impact of anticholinergic burden in Alzheimer’s Dementia – the Laser-AD study. Age and Ageing published online September 19, 2011 doi:10.1093/ageing/afr102

Fox, C. et al. Anticholinergic medication use and cognitive impairment in the older population: the medical research council cognitive function and ageing study. Journal of the American Geriatrics Society August 2011, Vol. 59, No. 8, pp. 1477-83. doi: 10.1111/j.1532-5415.2011.03491.x.

Smithard, D. G. et al. Do anticholinergic drugs contribute to functional and cognitive decline? Aging Health February 2012, Vol. 8, No. 1, pp. 57-60, doi: 10.2217/ahe.11.87