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Are Patients with Dementia Smarter than their Primary Care Practitioners?
Are Patients with Dementia Smarter than their Primary Care Practitioners?
The answer is not necessarily, however patients with dementia work much harder to mask and hide their dementia from the PCP, than their PCP works to diagnose their patients’ dementia.
How Has the Role of a Primary Care Practitioner Evolved?
Due to the increasing numbers of people living with Dementia and Alzheimer’s Disease, primary care practitioners, are seeing their patient loads be filled with more and more dementia patients. Primary Care Practitioners are usually the first health professionals that either patients or their families contact if concerned about memory decline. However only 60% of the people who meet the diagnostic criteria receive a formal diagnosis of dementia. Failure/Misdiagnosis rates have been estimated between 50% and 80% for moderate-to-severe dementia and up to 90% for mild cases. PCPs are usually the ones who have a long relationship with patients as well as their families, so patients and their families usually turn to the PCPs for sensitive matters such as memory loss or other signs of dementia.
Why is there such as high rate of Failure and Misdiagnosis? The Too Simple of an Answer…
Most primary care practitioners do not specialize in dementia and therefore symptoms get missed. Most PCPs rush through the appointments and do not take the time to notice dementia symptoms. Another too simple of an answer, PCPs treat dementia like they do other chronic illnesses by prescribing medications and sending the patient home. Although there is some truth in all these answers, the real answer is much more complicated.
The Real-Life Reason there such as high rate of Failure and Misdiagnosis?
Although there is some truth in the simple answers, they don’t paint the entire picture. Understanding and diagnosing dementia takes more than just being familiar with the typical dementia symptoms and being able to recognize them. There are many symptoms of Alzheimer’s and Dementia that a person exhibits before significant memory loss. Many people and their families discount these symptoms as just general senility or some other problem. These symptoms include personality changes. A warm, friendly person may turn into a bit of a grouch, at first occasionally, and then increasingly. They may start neglecting some of their grooming habits slowly. A person developing dementia may start telling inappropriate jokes in wrong settings. Another symptom is developing a problem with executive functions, such as difficulty with familiar, tasks such as cooking. A person will start having difficulty doing something that involves multiple steps, or following instructions. Word retrieval and getting out the right words can become a problem, and it may be a while before friends and family notice the more common communication problem of repeating stories or questions. Problems with depth perception or visual-spatial coordination can also precede memory problems. Usually these difficulties get blamed on vision problems and not dementia. Apathy and social withdrawal are also common with dementia. All these symptoms often precede memory loss, yet can easily be justified as being caused by something else other than dementia. Until a certain point, these symptoms do not significantly impact a person’s life, and therefore get ignored, and ultimately dementia is not diagnosed. One of the largest culprits of a missed diagnosis is masking by the person that has dementia. People with dementia usually notice something is wrong and they do everything they can to hide it. So even if a PCP asks their patient about one of the above symptoms, the patient easily comes up with a pliable excuse, such as they are tired and don’t 
want to do a hobby, the weather is bad, they are stressed, they need new glasses, they are not sleeping well and therefore their mind is foggy, and on and on. If a person with dementia misses their appointment, they are likely to blame it on the doctor’s office, or someone else, and even avoid making future appointments all together, due to the fear of missing the next appointment. It is very difficult, if not impossible for a PCP that treats a spectrum of patients including those with dementia and without to be able to pick up on these subtle symptoms. They are not focusing on these subtle symptoms, and because many of their patients do not have dementia, dementia and its symptoms are not in the fore front.
Why We Rarely See a Person with Mild Dementia Move to Assisted Living?
Since upwards to 90% of people with mild dementia get misdiagnosed or missed, most people do not realize something is wrong until there are blatant symptoms that usually harm a person in some way. Most people do not notice or get alarmed with a few missed medication doses, until a person either takes to many pills, or takes too few, gets dizzy, and falls. Even in those cases, they go to the hospital and the fall is at the forefront, and not the dementia that caused a person to forget their medications and fall. Rarely do families notice that their loved one is not eating, until there is a significant and visual weight loss. Families usually do not notice that their loved one is neglecting their grooming until they look obviously disheveled. They don’t notice personality changes, until something out of character and usually embarrassing occurs in public, very often in church. Most people with dementia improve their masking abilities over time, and their dementia is not addressed until they are not able to mask anymore, which is usually in the Early Moderate Stage of Dementia. By that time in many cases, substantial damage has been done, such as substantial weight loss, a broken bone due to an avoidable fall, and so much more.
The Take Away….
The solution to the huge percentages of failure/misdiagnosis of dementia, and the damage caused by these misses, is multi-faceted. There is a need for Comprehensive Dementia Education, Dementia Sensitive Primary Care Clinics and Doctors, and Cognitive Care Communities specializing in all levels of dementia from Mild to Severe. To find out more about the importance of a cognitive care community visit; http://orchardseniorliving.com/the-importance-of-a-cognitive-care-community-for-dementia-care/.
The next several posts will detail ideas and solutions to combating dementia caused crisis, and decrease the failure/misdiagnosis rates. Visit http://stage-osl.daveminotti.com/category/blog/
Creating an Enabling Environment is Key to Providing Dementia Care
How does Dementia effect a person’s ability to enjoy their hobbies and participate in activities?
Dementia gets worse over time. Although symptoms vary, the first problem many people notice is forgetfulness severe enough to affect their ability to function on a daily basis and to enjoy hobbies. One example is playing cards. A person with dementia will likely begin to forget the rules of a card game they have played their whole life. They may mess up during the game, which will usually cause them to avoid a card game they have played their whole lives all together. Aside from general forgetfulness, people with dementia often find that they lack the motivation to do anything. This loss of motivation can be attributed to general apathy or that certain activities have no value if they cannot be carried out as before. Repeated difficulty doing hobbies that used to be easy is also a painful reminder of the progression of the disease. Lastly but in my opinion most importantly, there is the issue of personal pride which causes masking, which is not wanting to show others that one cannot do something well or is forgetful. Even those who carry on with their usual activities sometimes lack the motivation or the incentive to get started due to the brain changes that come along with dementia. Family members often find it difficult to deal with apathy, particularly if the person with dementia has always been a fairly active person. In order to understand how Dementia and apathy are related, please visit my previous blog post http://stage-osl.daveminotti.com/apathy-is-a-main-the-road-block-of-dementia-care-at-home/
What does creating an enabling environment for a person with Dementia mean?
The first step is to know what type of activities or hobbies a person enjoyed prior to the dementia. Activities that are related to or connected with past hobbies are often easily accomplished as they bring a sense of familiarity. The second step is to align the type of activity to the stage of dementia. Over simplifying activities for someone with more capabilities is just as detrimental as not simplifying them at all.
Real Life Example: Lets take a puzzle activity. You are working with Jane who has mild dementia, who loves puzzles, and has done them all of her life. You present Jane with a 25 piece puzzle. She finishes it quickly and wonders why you brought her such a “child like” puzzle. This further effects Jane’s self esteem and reminds her that the world notices her cognitive deficits and has started treating her as a child. On the other hand you are working with John, who has moderate dementia, who also loved puzzles. You bring John a 200 piece puzzle. He struggles and struggles with it and after 10 minutes give up in frustration. The solution would have been to give the Jane the 200 piece puzzle and to give John the 25 piece.
What if you are working with a new person and are not sure of their current abilities?
Lets take the above example of Jane and John and puzzles. If you are not sure of their abilities you bring several puzzles to both. In Jane’s case, if you see her quickly putting it together, you tell her that she is doing a great job, and that you knew that puzzle was too easy, and that you brought another one and put the 200 piece in front of her. In John’s case, as soon as you notice that he is struggling you tell him that it appears that there are pieces missing from that puzzle, and you have one for him that has all the pieces, at which point you take out the 25 piece puzzle. It is very important to say that there is something wrong with the puzzle so that John does not feel that you changed puzzles because he could not do the first one.
What is another example of creating an enabling environment?
Choosing a simplified version of an activity, or an easier game or version are also ways of creating an enabling environment. Simplifying an activity or a game by removing some of the steps.
Real life example: Jenn used to be a chef and has cooked her whole life. She has given up cooking on her own but loves to participate in cooking activities. Jenn is in the moderate state of dementia. You have a cookie recipe that makes cookies from scratch by first making dough and then baking the dough. In order to enable the environment for Jane, you take that same recipe but you remove the more difficult steps such as those steps where the dough is made and you start with the dough being in front of Jenn. You have now created a simplified version of a hobby that Jenn can do and she will get the same final cookie as she would have if the cookie was made from scratch.
Many do not realize that time awareness is part of an enabling environment but it is..
Many people with dementia loose track of time in general. They also have trouble remembering appointments as well as at what time activities take place. Because they start forgetting and missing activities and appointments, many times they stop attempting to go to any of these appointments or activities. To create an enabling environment, you must take the remembering out of their minds. Instead of telling them in advance, scheduling future events or appointments, you tell them in the moment right before the appointment or activity. You also reassure them, that you will get them for the each activity, not because they will forget, but because you want to. This will take the stress of remembering out of the equation and help foster more participation in hobbies and activities.
The Take Away…Creating an enabling environment takes on many forms. Some of these forms are tangible activities and some are communication styles. It is important to know that creating an enabling environment is not a skill that most people naturally have. It is not a skill that you make up as you go. It is imperative to surround a person with dementia with those who understand dementia, and have received specialized training and have experience with things such as creating an enabling environment and communicating with a person with dementia. Continuing dementia education is a great way to learn the skills to engage a person with dementia. Join us at the Orchard at Tucker, 2060 Idlewood Rd, Tucker GA 30084 on Thursday, January 4th at 6:00 pm for our monthly Live & Learn Dementia Education Forum. For more information call 404-775-0488 or download http://stage-osl.daveminotti.com/wp-content/uploads/2017/12/Live-Learn-Dementia-Educational-Forum.pdf
Final Stages of Nutrition Therapy Development for Dementia Residents
What is Nutrition Therapy and who can benefit from it?
Eating and enjoying a meal is part of our everyday life and important to everybody, not least to people living with dementia. A healthy diet and nutrition is fundamental to well being at any stage of life and to helping to combat other life-threatening diseases. We believe it plays as important a role in relation to dementia progression, and a resident’s quality of life. Under-nutrition is common among older people generally, particularly common among people with dementia. Under nutrition tends to be progressive, with weight loss often preceding the onset of dementia and then increasing in pace as the disease progresses. The mechanisms underlying weight loss and under nutrition in dementia are complex, multi factorial, and unique to each person. Common reasons include reduced appetite, increased activity, the need for a modified diet and, decreased nutrient absorption. For some forms of dementia, it may be that central regulation of appetite and metabolism is disturbed as an inherent feature of the disease. Although we can’t avoid these symptoms which lead to malnutrition and under nutrition, we can manage them with a variety of Nutrition Therapy Options. Orchard at Tucker’s Nutrition Therapy Program is designed to help combat under nutrition and bring back the joy of eating to those who have lost it.
We are in the Final Testing Stages..
After many months of work with our team and partnering dieticians, Orchard Senior Living is in the Final Testing Stage of our 4 Part Nutrition Therapy Program. Today’s enriched smoothies were a huge hit. These enriched smoothies are designed to help those in the moderate to severe stage of dementia, who have lost significant weight in the last 6 months, and for whom all other care and environmental modifications have failed. Each 4 oz pretty glass delivered 240 calories, 9 grams of Organic Protein, and so much more. Most importantly each glass looked and tasted amazing!
Orchard at Tucker’s Nutrition Therapy Program Coming in 
2018..
Preference Centered Therapeutic Diets in Dementia & Alzheimer’s Care
What is a Therapeutic Diet?
A therapeutic diet is a diet that controls the intake of certain foods, liquids or nutrients. It is part of the treatment of a medical condition and are usually prescribed by a physician and planned by a dietician or a nutrition specialist. A therapeutic diet is usually a modification of a regular diet with items added or subtracted from a diet. Therapeutic Diet is modified or tailored to fit the nutrition needs of a particular person.
Types of Therapeutic Diets? There are many more than listed below..
- Nutrient Modification Diets such as renal diet, low salt diet, diabetic diet
- Texture Modification Diets such as puree diet, mechanical soft diet, liquid diet
- Food Allergy or Food Avoidance Diet such as gluten free or lactose free diet
- Supplemental Diet where additional supplements or fortification is added
What is a Preference Centered Therapeutic Diet?
A diet that takes into account the resident’s clinical condition or limitations, in conjunction with personal preferences, when there is a nutritional indication. It is designed based upon resident’s preferences and desires for their quality of life. Residents goals are also at the center of a preference centered diet. Residents must be provided with all of their nutritional options, detailed description of the need for therapeutic diets, and the consequences and risks associated with not following the recommended diet. A resident needs to be provided with every alternative available, as well as the recommended time frame for the diet.
Examples of a Preference Centered Therapeutic Diet?
Example 1.
Dan has been exhibiting chocking during his meals following his stoke. He has undergone a full evaluation by his doctor and speech therapist who both deemed Dan has dysphagia. Following this diagnosis Dan was prescribed a puree diet. His care partners then started turning his usual meals into puree form. Dan was presented with pureed steak, carrots, pork, and other foods he used to enjoy before the diet restriction. Dan has not enjoyed those pureed meals and has lost 20 pounds in one month. One of the care partners noticed that Dan will eat puree items that naturally come in puree form such as mashed potatoes, smoothies, yogurts and puddings. After these observations, a nutrition specialist created a menu for Dan that includes only puree items in their natural form. Additional flavors of mashed potatoes and yogurt along with other naturally puree foods were ordered in order to fill up Dan’s week with a healthy diet with a variety of choices.
Example 2.
Angie has heart disease. After an examination, Angie’s doctor placed her on a salt restricted diet. Following these orders, Angie has refused to eat most foods and lost 15 pounds. She complained that her food tasted bland and she did not want it. Angie’s care partners contacted her doctor and explained the dilemma and requested that the doctor look into liberalizing Angie’s diet. Angie was also explained in detail the risks and consequences of putting salt back into her diet with her current heart disease. Knowing all the risks, Angie deemed that at 90 years old her Goal was not prolonging longevity, but having the best quality of life. It was her preference to add salt back to her diet, understanding the risks. Her doctor felt that Angie and her family understood the risks and liberalized her salt intake. Angie gained 10 pounds the following month. She was able to enjoy her food again.
The Take Away..
Although therapeutic diets are sometimes necessary and beneficial to a resident’s health, a preference centered therapeutic diet just enhances the benefits buy focusing on the residents’ goals, desires, preferences, along with their nutritional needs and doctor’s orders. All five components work together to create a therapeutic diet that is beneficial to residents’ health yet minimally negatively impacts their desires and quality of life.
The Subtle Signs of Swallowing Problems for Those with Dementia and Other Diseases
How does swallowing actually occur?
The oral phase of swallowing requires a complex interplay of chewing, food bolus formation, and push of the bolus to the back of the throat for the process of swallowing and movement to the esophagus and stomach. Multiple facial and oral muscles, such as the tongue, are responsible for this phase. Once the food bolus is to the back of the throat a series of muscular contractions occur to move the bolus into the esophagus and away from the airway. The airway is temporarily closed as the food bolus is pushed past the tracheal opening and into the esophagus. The food bolus then makes its way to the stomach through another series of coordinated muscular contractions within the esophagus.
Sounds Complicated Right? It is and lots can go wrong..
Due to the complexity of the swallow mechanism, a multitude of problems that can arise. The most common cause of oral dysphagia (swallowing trouble) is stroke, with up to 45 percent of stroke patients develop swallowing problems following the stroke. Other neurological diseases such as Parkinson’s disease, Multiple Sclerosis, Dementia, and Alzheimer’s disease are known to cause swallowing difficulties. Lesions, re flux conditions, and cancer have also caused swallowing troubles but to a lesser extent.
There are obvious and less obvious signs of swallowing difficulties…
Everyone knows that if a person coughs up food or gags while eating, they likely have swallowing troubles. However there are other more subtle signs that can go easily unnoticed such as long breaks between bites, being horse, drooling, frequent heartburn, and acid re-flux.
What can happen if these subtle signs are ignored?
If subtle signs are ignored they can result in choking, where food partially or fully obstructs a person’s airway, aspiration or inhalation of food or liquids, oral secretions or gastric secretions into the airway and lungs. Also gastric secretions may be inhaled without bacteria causing aspiration pneumonia. A person may aspirate not only food or fluids that are introduced into the mouth but also their own saliva or any gastric secretions, which may be re-fluxed into the airway.
What can be done?
In a community setting, all care partners must be trained to carefully observe each resident for not blatant signs such as chocking, but for the subtle signs such as drooling, and long pauses and usually get confused for something other than swallowing challenges. When a person lives alone, the signs of swallowing trouble usually go ignored until they end up in the hospital. In many setting, little attention is paid to dining room observation. Orchard at Tucker understands the importance of monitoring these subtle symptoms and finding the problem while it is minor,
and before it causes a resident irreversible harm.
Transition Care Giving is Essential in Dementia Care
Transition and change in general is hard on everyone…
Have you ever moved into a new house? Started a new job? If you answered yes than you can recall your first week. Do you recall how stressed out you were with the change? Change of location, change of routine is hard on everyone, however having Dementia and Alzheimer’s makes change about 10 times harder.
Transitioning While Having Dementia? About as Hard as Sky Diving While Being Afraid of Heights..
Dealing with an aging loved one that has dementia or Alzheimer’s can be very stressful, especially when it is time to move that senior into an Assisted Living or Memory Care Community. Many families see how important a familiar environment is to their loved one. Being in a familiar place with a familiar daily routine is something that many with Dementia come to rely on. Families worry about the stress that can happen with their loved one during the transition. Stress is escalated in seniors whose cognitive capacity is limited by their Dementia or Alzheimer’s disease. This is a very real fear. Depending on the progression of disease, changes can be very upsetting and disruptive to the patient. Seniors suffering with progressive degenerative brain disease cannot frame their fears and anxiety with logic, as the rest of us can. A change in environment can often cause tremendous stress for the senior.
What is Transitional Care?
A private duty caregiver meets the senior prior to the move into a community and accompanies them to the community. The caregiver than spends between 4-12 hours each day for 3-14 days with the senior. They accompany them to activities and trips. The caregiver helps a senior learn their new environment. The caregiver stays with the resident for the scheduled hours. The caregiver is there at arm’s length if a senior gets anxious, confused, or stressed out. The amount of hours and days of transitional care depends on the seniors’ cognitive level, as well as their stress and anxiety threshold.
Why is Transitional Care Important?
Many seniors whose cognitive abilities are hampered by Dementia and Alzheimer’s, have heightened levels of anxiety. They also experience higher levels of stress in many situations. They also retain less new information, which makes change this much harder. The transitional care giver is there to help lessen the stress of transition by being there with the senior to guide them one on one. Once the senior is settled in their new home, the caregiver remains a part of their care plan until they have become accustomed to their new surroundings. A transitional care taker may start out by spending 12 hours with the senior for the first 3 days. After the 3 days, they spend 8 hours for the next 4 days. After the first 7 days, the hours go to 4 hours for the next 3 days. After that the hours go to 4 hours a week. Each senior is different, however it is recommended that transitional care giver hours get cut slowly based on the seniors’ needs. It usually takes about 30 days to get adjusted to a new community and getting a transitional caregiver involved softens that blow.
Do Communities Offer Transitional Care?
Some corporate giants like Brookdale do have their own agencies. Most smaller companies partner with an agency so that transitional care is provided by a caregiver that is not employed by the company. Orchard Senior Living now has a sister company Peach Home Care which provides transitional caregivers and private duty caregivers to residents.
The Importance of a Cognitive Care Community for Dementia Care
We All Age But…
There is no way to avoid the aging process. Our bodies age, we get new wrinkles in relative the same pace. The one difference is, our Brains age differently. The majority of us will encounter some level of age related decline, but some of us will experience a more pronounced level of cognitive decline and/or dementia. Although our chances of getting dementia increase with age, dementia is not a part of the natural aging process. Dementia is caused when the brain is damaged by diseases, such as Alzheimer’s disease or a series of strokes.
Many Studies have been done Comparing the Aging Population with those with a Cognitive Impairment or Dementia…
There have been numerous studies done involving those with Mild Cognitive Impairment (MCI) or Mild Dementia that looked at how that impairment changed a person’s views about themselves. These studies showed that Cognitive Impairment showed could profoundly affect a person’s understanding of their place in the world.
Two Groups of Seniors…..
Studies looked at two groups of seniors. One group of seniors without a cognitive impairment or dementia and one group with one or both of those impairments. Both groups described experiencing common memory mistakes such as forgetting names of friends and neighbors, misplacing common items, and repeating themselves in conversation. These incidents resulted in a variety of negative emotional experiences and self-evaluations that were expressed differently by the two groups. Participants with age-normal memory changes described feeling as if they are getting forgetful but attributing that forgetfulness to normal aging that happens to everyone and laughing it off as a goof. On the other hand the group with the MCI or dementia felt “bothered,” “upset,” and “embarrassed” by their memory mistakes. They expressed some degree of self-doubt about their abilities and a tendency to put themselves down. Some even said that their memory mistakes made them “feel stupid.”
More Differences Between the Two Groups of Seniors…
Memory changes showed to have important consequences for everyday social interactions and relationships with others. The changes described were generally positive for older adults with age-normal memory changes and generally negative for those with a MCI or Dementia. The group with normal memory change described a sense of camaraderie with their same-age peers who experience similar types of memory changes. In contrast to the normal memory group, individuals with Cognitive Impairment spoke about how their memory problems have led to social withdrawal and isolation . They also stated that they “don’t get out as frequently,” that they are “withdrawing more from social occasions,” and even that they have become more “introverted.” There are a variety of reasons as to why memory problems have led to social withdrawal in the group with the Cognitive Impairment. Remembering friends’ names and shared experiences is an important part of social relationships, and failure to do this can be embarrassing or frustrating. For some individuals, withdrawing from social interactions is a way to avoid embarrassment. Seniors with a Cognitive Impairment, said they have more difficulty engaging in activities because their more significant memory problems leave them feeling lost, confused, or embarrassed. They describe feeling left out or disregarded in social interactions, thus causing them to withdraw from these activities to an even greater degree. In many cases the result is a loss of confidence which leads to withdrawal from social and leisure activities, and the consequent decline in participation in these activities results in increasing difficulty in these areas, followed by further loss of confidence and feelings of inadequacy.
What Happens when the Two Groups Consistently Interact….
In most cases Cognitive Impairment or Dementia will not get better. It is a progressive disease that only gets worse. Currently there is no cure. It is almost impossible to teach all those Without a cognitive impairment how to interact with those With a cognitive impairment correctly. In many cases they wont even understand or know what they are doing wrong. When seniors with no cognitive impairment consistently interact with seniors with cognitive impairment, the deficits of the impaired group become more and more obvious each day. These results lead to decreased confidence and ultimately isolation for the group that is cognitively impaired.
What is the Answer?
Although there is no perfect answer or a solution, the best answer is a Cognitive Care Community. A community where all the residents have a degree of cognitive impairment and are grouped by the level of their impairment. In a Cognitive Care Community, residents interact with those that are on their level cognitively. They may be enjoying a lunch where all the table mates take turns telling the same story they already told. Because all of them are doing it, no one is made to feel worse than the other. There is no one at that table that will cut off a table mate mid story and say “you already told us that story”, “stop being repetitive”. All four leave the lunch feeling good about themselves without their deficit being in the forefront. The goal is to make those good feelings last for as long as possible…