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The Need for Dementia Sensitive Primary Care

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What was the Inspiration behind this post?

Last week I had a doctor’s appointment with my primary care doctor. It was a 3 pm appointment.  Here it was almost 4 pm and I was just getting called. When my doctor saw me, she immediately apologized and told me the reason for the delay. She said that today many of her patients had dementia, and those appointments take longer than the other appointments, yet they are scheduled for the same amount of time. My doctor knows I work in senior living, so she felt comfortable telling me her feedback of her experience with dementia patients.  My Doctor told me that she spends a large part of the appointment counseling her dementia patients and their families. She also told me, the most frustrating part of her appointments with those with dementia, is explaining to them, that there is little she can do medically to alleviate the symptoms caused by dementia. She said many family members for instance notice their loved one with dementia has suddenly lost weight, and they want a prescription to combat that. She then has to give them the disappointing news that weight loss caused by dementia is a comprehensive symptom and can’t be fixed over night with a prescription. Needless to say, she was very excited to hear about Orchard’s Brand New 4 Tier Nutrition Therapy Program coming in 2018. For more information about Nutrition Therapy for Dementia please visit: http://stage-osl.daveminotti.com/final-stages-of-nutrition-therapy-development-for-dementia-residents/, as well as http://stage-osl.daveminotti.com/nutrition-therapy-at-each-level-of-dementia-care/

What Does Dementia Sensitive Primary Care Mean?

Dementia Sensitive Primary Care, are primary care services that are provided solely to individuals living with dementia. These services are provided by professionals that specialize in dementia, and in many cases only treat those with dementia. This type of care can be provided in a clinic or by a mobile service, by a medical professional ranging from a Nurse Practitioner to a Doctor. This clinic and or professional is designed to replace a person’s primary care provider that they had prior to the dementia.

What is an Example of Dementia Sensitive Primary Care Center?

The Integrated Memory Care Clinic, located in Atlanta, is a nationally-recognized patient-centered clinic that provides primary care for someone living with dementia. The clinic provides a variety of services to meet the challenging needs of those living with dementia. Whether the patient living with dementia has a cold, needs a vaccine, or has a change in behavior, the clinic can help. Dementia and other chronic conditions are managed exclusively by nurse practitioners who collaborate with geriatricians and neurologists on the team. The nurse practitioners have advanced training and specializations in dementia, geriatrics, and palliative care. A clinical social worker is also a vital member of the team. I personally know people that are patients at The Integrated Memory Care Clinic, and I know some of the professionals that manage it. I can say this clinic does an absolutely amazing job, and I would recommend it to anyone who is looking for Dementia Sensitive Primary Care.

Can Dementia Sensitive Primary Care be done outside of a clinic?

The answer is yes. I personally work with several medical groups that provide concierge dementia sensitive care in a person’s home. They can go to someone’s home or to their community. The group I work with closest has a team of professionals that provide the care. Their team is made up of a Geriatric Psychiatrist, a Nurse Practitioner and a Doctor trained in dementia care, as well as an Occupational and Speech Therapist. These professionals work as a team to define the patient’s cognitive, functional and behavioral profile, and create a care plan to manage their care. The extent to which each specific professional sees the patient depends on the patient’s needs and their profile. These services are offered in a person’s home, and at the Orchard, or another community.

Why do we need Dementia Sensitive Primary Care for those with Dementia?

Currently, 50-90% of all dementia gets misdiagnosed or gets missed all together until a crisis happens.  Even if Primary Care Professionals start to more accurately recognize dementia, the quality of management of the disease after the diagnosis is usually sub optimal. Even if a PCP can diagnose dementia, in many cases they do not have a plan for follow up management. After dementia is diagnosed, there needs to be a plan of care set up to address potentially starting dementia-specific drug treatment to slow the decline, assessment and management of Behavioral and Psychological Symptoms of Dementia (BPSD), safety issues in and out of the home, side effects of psychotropic drugs, as well as the stress of family care givers. Most Primary Care Professionals today are not equipped to provide follow up dementia care. These PCPs are missing the coordination of primary healthcare partners,7730d221ef4d4b91dffa4c2100dde11e--flowers-wallpaper-hd-wallpaper as well as the implementation of support for both people with dementia and their caregivers. Hopefully in the next few years, more Integrated Memory Care Clinics will spring up, and more people with dementia will receive the Dementia Sensitive Primary Care they need.

 

Are Patients with Dementia Smarter than their Primary Care Practitioners?

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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 111214_TECH_doctorpatient.jpg.CROP.rectangle3-largewant 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

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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.
1503696303319The 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

Preference Centered Therapeutic Diets in Dementia & Alzheimer’s Care

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puree5What 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.

How does Parkinson’s disease progress?

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Parkinson’s disease does not affect everyone the same way. Symptoms of the disorder and the rate of progression differ among people with the disease. Early symptoms of Parkinson’s disease are subtle and occur gradually. For example, affected people may feel mild tremors or have difficulty getting out of a chair. They may notice that they speak too softly or that their handwriting is slow and looks cramped or small. This very early period may last a long time before the more classic and obvious symptoms appear.

As the disease progresses, symptoms may begin to interfere with daily activities. The shaking or tremor may make it difficult to hold utensils steady or read a newspaper. Tremor is usually the symptom that causes people to seek medical help.

People with Parkinson’s often develop a so-called parkinsonian gait that includes a tendency to lean forward, small quick steps as if hurrying forward (called festination), and reduced swinging of the arms. They also may have trouble initiating or continuing movement, which is known as freezing.

Symptoms often begin on one side of the body, or even in one limb on one side of the body. As the disease progresses, it eventually affects both sides. However, the symptoms are often less severe on one side than on the other.p progression

Who gets Parkinson’s disease?

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brainAbout 60,000 Americans are diagnosed with Parkinson’s disease each year. The disease strikes more men than women. The average age of onset is 60 years, and the risk of developing the disease increases with age. Parkinson’s disease is also more common in developed countries, possibly because of increased exposure to pesticides or other environmental toxins

What Causes Parkinson’s Disease? Many Answers

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What Causes Parkinson’s Disease?

A Shortage of Dopamine

Parkinson’s disease occurs when nerve cells, or neurons, in an area of the brain that controls movement become impaired and/or die. Normally, these neurons produce an important brain chemical known as dopamine, but when the neurons die or become impaired, they produce less dopamine. This shortage of dopamine causes the movement problems of people with Parkinson’s.

Dopamine is a chemical messenger, or neurotransmitter. Dopamine is responsible for transmitting signals between the substantia nigra and multiple brain regions. The connection between the substantia nigra and the corpus striatum is critical to produce smooth, purposeful movement. Loss of dopamine in this circuit results in abnormal nerve-firing patterns within the brain that cause impaired movement.

Loss of Norepinephrine

People with Parkinson’s also have loss of the nerve endings that produce the neurotransmitter norepinephrine. Norepinephrine, which is closely related to dopamine, is the main chemical messenger of the sympathetic nervous system. The sympathetic nervous system controls many automatic functions of the body, such as heart rate and blood pressure. The loss of norepinephrine might help explain several of the non-movement features of Parkinson’s, such as fatigue, irregular blood pressure, decreased gastric motility or movement of food through the digestive tract, and postural hypotension. Postural hypotension is a sudden drop in blood pressure when a person stands up from a sitting or lying-down position. It may cause dizziness, lightheadedness, and in some cases, loss of balance or fainting.

Genetic Mutations

Although some cases of Parkinson’s appear to be hereditary, and a few can be traced to specific genetic mutations, most cases are sporadic. Sporadic means the disease occurs randomly and does not seem to run in families. Many researchers now believe that Parkinson’s disease results from a combination of genetic and environmental factors.

 

What Causes Parkinson’s Disease?

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Parkinson's

What Causes Parkinson’s Disease?

A Shortage of Dopamine

Parkinson’s disease occurs when nerve cells, or neurons, in an area of the brain that controls movement become impaired and/or die. Normally, these neurons produce an important brain chemical known as dopamine, but when the neurons die or become impaired, they produce less dopamine. This shortage of dopamine causes the movement problems of people with Parkinson’s.

The Positive Effects of a Resident Garden Extend Past Just Beauty

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Tips for Communicating to Seniors with Dementia

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senior-care

Depending on what stage of dementia your loved one is in, sometimes communication can be a challenge for family members. Dementia can cause mood swings or possibly change their personality and behavior. Here are a few tips to help you connect with a person with dementia.

Realize your challenge
There will always be good days and bad days for those with dementia. Don’t let a few bad interactions discourage you from trying again.

Be patient
Tolerate compassionately any delays or provocation. Dementia isn’t easy but what can make a huge difference in interactions is having patience.

Minimize noise
Loud music, movies, or even construction outside can disturb and confuse people with dementia.

Avoid arguing
Go with the flow and do not contradict people with dementia. Telling them they’re wrong may have a negative effect.

Slow Down
Talk and interact in a relaxed manner. Enable the person to do things for themselves, even if it’s small. Try to keep things simple.

If you need something more than a few tips and you’re considering senior care services in the Tucker, GA area outside of Atlanta, contact us here and discover the Orchard difference.