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, 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?
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/
What Does Dementia Mean to the Average Person?
Dementia is a general decline in cognitive ability severe enough to interfere with daily life. Memory loss is one example. Dementia is not a specific disease. Dementia is a term that describes a wide range of symptoms associated with a decline in memory and other thinking skills severe enough to reduce a person’s ability to perform everyday activities. People with dementia often have problems with short-term memory recall, keeping track of a wallet or other possessions, paying bills, planning and preparing meals, remembering appointments or traveling out of the neighborhood. Dementia is progressive, as symptoms start out slowly and gradually get worse. As Dementia progresses, individuals notice increased memory loss, mental decline, confusion especially in the evening hours, disorientation, inability to speak or understand language, making things up, mental confusion, or inability to recognize common things.
Although the above examples of dementia symptoms are true, and do indeed interfere with a person’s everyday life, they are not a full picture of dementia symptoms. When dementia steals memory, language, thinking and reasoning, these new deficits are referred to as “cognitive deficits” of the disease. The term “behavioral and psychiatric symptoms” describes a large group of additional, and in my opinion most devastating, symptoms that occur to at least some degree in many individuals with dementia. In early stages of dementia, many experience personality changes such as irritability, apathy, anxiety or depression. In later stages, many experience sleep disturbances, mixing up their days and nights, agitation such as physical or verbal outbursts, combativeness, combativeness while getting care, refusal to get care, general emotional distress, restlessness, continuous pacing, shredding paper or tissues, yelling for no apparent reasons, delusions, paranoia, misperceptions, or hallucinations.
Real Life Example of a Behavioral Change.
Linda is 87 in the moderate stage of dementia. She retired as a Vice President of a company. Her family told me that she was known for her business acumen and immaculate appearance. Her outfits were always perfectly put together, her makeup and hair flawless. Today, due to the dementia, it is a struggle to get Linda to take a shower, comb her hair, or get any grooming what so ever. She refuses to wear makeup and will very rarely agree to get her hair done. She refuses manicures and pedicures that she used to get weekly for over 40 years. It is extremely painful for her family to watch Linda, who was always so well put together, now refuse to get her hair done, and be combative when any grooming is attempted. Unfortunately, this type of a personality change is common to those with dementia. Dementia has stripped Linda of her desire to look nice and be well groomed. In a year’s time, dementia has changed grooming habits Linda had for over 40 years.
Real Life Example #2
Lynn is 84 in the moderate stage of dementia. She worked as party planner before she retired. She was always very social and the life of the party. Lynn remained social into the mild stages of dementia. During the tail end of the mild stage, Lynn was still social, however when she would be around others they would ask her questions about her family and herself that she had trouble answering due to her dementia. Each time Lynn was not able to answer a question, she would leave the social or the event immediately. Shortly after, Lynn refused to participate in any of the hobbies and socials she enjoyed her whole life. This is another common example of dementia changing a person’s personality, and converting a social butterfly into a reclusive butterfly.
Lynn was reclusive and isolated for several months. Finally, her family decided to move her to the Orchard at Tucker, a community that specializes in cognitive care and engagement for those with cognitive deficits. Lynn’s family provided the Orchard with a detailed profile as well as her history and the Orchard engagement team came up with a detailed plan to combat Lynn’s new reclusive personality. The engagement team took all the information they were given, and they were able to create an Enabling Environment for Lynn. To learn more about enabling an environment see http://stage-osl.daveminotti.com/creating-an-enabling-environment-is-key-to-providing-dementia-care/)
With the creation of a new enabling environment, Lynn slowly started to participate in some activities. Although the Orchard engagement team did several things to modify her environment, one such modification was surrounding Lynn with other residents that were on her cognitive level. They also made sure that all team members were aware of Lynn’s history and her strong desire to mask her dementia. When everyone was aware of Lynn’s dementia, and the other resident around her also had dementia, no one asked Lynn any difficult questions, and her dementia never stood out to others. This one environmental change alone led to Lynn participating in activities daily, although never to the extent she used to participate prior to the dementia. Environmental modifications are very helpful, but they can never make up for all the damage caused by dementia. In Lynn’s case, her personality change could have been minimized if an enabling environment was created sooner. I believe Lynn’s personality change was so significant, so quickly, at least in part due to Lynn losing her self-esteem by not being able to answer the questions asked, and her struggle to hide her dementia from those that were noticing. This is a prime example of a personality change that dementia caused, that could have been lessened by an earlier intervention.
The Take Away..
I have spoken with so many loved ones of those with dementia, and they have all agreed, that the behavioral changes caused by Dementia that are hardest on their loved one, as well as the entire family. Losing your memory is nothing compared to becoming a different person. Also, it is the behavioral changes caused by dementia that impact one’s life, much more negatively than memory loss. It is much easier to compensate for a person’s memory loss than to compensate for extreme anxiety, paranoia, combativeness, or refusal to get care. These behavior symptoms are rarely talked about. When you ask the average person what dementia means, they will say dementia causes memory loss. Most people do not realize how many other terribly negative symptoms are caused by dementia. They don’t realize that if dementia just caused memory loss, most people with dementia would have a much better quality of life. Most people don’t understand the devastation dementia causes. Dementia causes comprehensive memory loss, not just memory loss of what happened yesterday, or what time it is, but in many cases the loss of one’s personality. Very rarely are the personality changes positive. Almost always these behavioral personality changes negatively impact a person’s quality of life. These changes often create a completely different person, often unrecognizable to friends and family. As dementia progresses, these changes happen quickly and become more and more noticeable. It is important to understand that they are still the same person inside. They have not changed on the inside, the way they now communicate with the outside world has changed. Dementia causes a person to have a battle, both internal and external, a battle for who they were, and how they were ones perceived.
Challenges at mealtime are extremely common for those with dementia. These mealtime challenges will change as dementia progresses. There are distinct and separate challenges that are associated with early, middle and late stage dementia.
What are the common mealtime challenges for those in the Early Stage of Dementia?
- Loss of concentration
- Changes in food preferences
- Reporting that foods taste bland (foods previously enjoyed)
- No longer enjoying favorite restaurants
- Unable to hold attention through a meal
- Distracted by the environment at mealtime
What are the common mealtime challenges for those in the Moderate Stage of Dementia?
- Confusion and unawareness of surroundings, place and time
- Appetite increase and weight gain
- Decreased appetite and weight loss
- Failure to understand proper use of utensils
- Refusal to sit during meal times- pacing, wandering
- Increased difficulty with word finding and decision making
- Unable to recognize food temperatures
- Unable to see food as food (may think food is poisoned)
- Unable to recognize food items once liked
- Hiding of food
What are the common mealtime challenges for those in the Severe Stage of Dementia?
- Preference for liquids over solids, due to appetite change or lack of swallowing ability
- Aggressive or combative behaviors during a meal
- Clenches jaw, or closed fist when attempting to feed or be fed
- Refusal to eat due to unknown reasons (variety reasons could be at play)
- Inability to self feed, not being used to being fed
- Swallowing impairments ranging from mild to severe
- Weight loss despite regular caloric intake (can also be due to increase activity due to increased anxiety)
What are some important tips for a creating a dining environment for those with Dementia?
- Tableware contrast ( avoid white plates on white linens)
- Too many utensils
- Avoid high gloss floors
- Natural light is best
- Avoid a distracting dining environment with too many items on the table
- Make sure the table and chair is sturdy, and of the right height
- Simplified dining room is best
- All food served at once is usually best (although there are some exceptions)
- Offer finger foods (avoid finger food that are too intricate or rare)
What if the above tips do not work?
If the above tips do not help with the challenges presented at mealtime, your team needs to take further steps to make sure that nutritional needs are met and your resident with Dementia is getting adequate caloric intake and the necessary nutrition.
The first thing your team needs to do is to do a full assessment of each person’s unique situation and determine the specific deficiencies caused by the mealtime challenges. During the assessment your team must set goals and prioritize the deficiencies, identify resources needed based on the severity of a person’s challenges. Your team needs to also identify possible behavioral and nutrition interventions such as a change of dining environment. Finally your team should specify the time and frequency of the intervention.
Please check back soon for Part II of this article
What Role Does Eating Play in Dementia?
Eating plays an important role in all our lives. Eating is often a social event, as
well as quality time shared with family and friends. Eating can also provide structure to the day.
For seniors with dementia, eating and drinking can become more difficult. They
may be less able to feed themselves and may also have a poor appetite or
lose interest in food, making it more challenging to achieve good nutrition.
This can be a source of great distress for both the resident and their family and also lead to malnutrition.
What Role Do Fluids Play in Dementia?
Drinking is also important for everyone, including for seniors with Dementia & Alzheimer’s Disease.It is important to aim for at least 8 cups of fluids a day. Fluids can include water, tea, coffee, fruit juice, liquid soup, and milk.
Although it is difficult for some people of all ages to drinking 8 cups a day, it is particularly difficult for seniors and extremely difficult for seniors with Dementia or Alzheimer’s. Some seniors with Dementia may not recognize that they are thirsty or even
may forget to drink all together. This lack of fluids can cause dehydration which leads to constipation, urinary tract infections and can also increased confusion and irritability.
Tips you can use to make eating easier for seniors with dementia?
- Avoid distracting noises from television by eating in a dining room
- Meal presentation must be appetizing, neat, and organized, as well as appropriately portioned.
- Avoid serving meals of one color or one texture
- Eating in company will enhance eating
- Offer a variety of foods, including a variety of textures and colors
- Provide frequent gentle reminding
- Offer extra food if it seems a person is really eating well that day.
Tips you can use to make drinking easier for seniors with dementia?
- Make drinks available frequently throughout the day, offer numerous times
- Put the cup into the seniors hand to prompt them to drink, rather than leaving it on the table and them forgetting it
- Offer a variety of fluid options, not everyone will drink water
- If you are offering water, put it in a pretty cup
- Offer flavored water over plain water
- Do not fill a cup that is too large and seems overwhelming