Physical & Nutritional Supports (Part 2)

Last month, we talked about Physical Supports and the concept of supporting a person 24/7 to achieve better health. In this month’s article, we’ll touch on Nutritional Supports. I credit HRS founder, Karen Green McGowan, RN, with enhancing my knowledge about this important way of support.

Few people with intellectual and developmental disabilities (IDD) are born with bony deformities. This is more often a function of failing to initiate the battle with gravity that begins with spinal shaping from a belly-down position. If, instead of moving the head and spine against the opposing force of gravity that normally changes the spine from a big C into an S curve, the person remains on their backside with little active movement, the body will take a new shape that reflects the primary pattern of movement. The head and spine will often flatten and reshape into scoliosis, kyphosis and a flattened chest. These deformities can interfere with normal bodily functioning including the ability to safely swallow.

Nutritional Supports are basically supporting a person in safely achieving good nutrition.

Consider someone that eats with her head rolled back and to the left. This position prevents an adequate closure of the flap that protects the windpipe. Bits of food can just fall right on into the airway. She develops aspiration pneumonia which leads to fibrosis in her lungs. Even if the poor eating posture is thereafter corrected, the fibrosis will predispose her to further pneumonias.

The key lesson here is prevention. Nutritional Supports are basically supporting a person in safely achieving good nutrition. Below are a few general tenants of good nutritional support.

Basics of proper alignment for eating:

  • Align the person starting with the proximal joints and work your way out to the arms and legs.
  • The trunk should between 45 and 105 degrees with 90 degrees the theoretical optimum.
  • We can eat in other positions besides sitting, such as prone on forearms or side lying. These positions are usually reserved for people who have deformities such that sitting is not a good position for them.
  • Keep the trunk as straight as possible with the nose, navel and knees pointing in the same direction.
  • The head should be pointing forward with the nose in midline. The head should not be tilted forward or back as that interferes with the function of the epiglottis in covering the airway. The most dangerous of these is tilted back as it opens the airway right up. It is very dangerous to eat this way.
  • The person may need to have their head supported in neutral and a little help to pull the jaw forward.

The above is general information and should not be implemented for any particular person without consulting with their healthcare professional. Always refer to a person’s Physical and Nutritional Support Plan for individual guidance of positioning and proper techniques for safe eating.

Physical & Nutritional Supports (Part 1)

I’ve practiced medicine in the field of healthcare for people with intellectual and developmental disabilities for many years, and sadly, I had never heard of the term “Physical and Nutritional Supports.” Sure, we did some of these things in our clinical support of people with IDD, but we never had fully understood what I consider this “lost art.” It’s time to put an end to that way of thinking. In this newsletter, we’ll talk about Physical Supports, and in a later newsletter, we’ll delve into Nutritional Supports. Much of what you read in these articles was adapted from the writings of HRS founder Karen Green-McGowan, RN. I’m thankful for the opportunity to have learned this and so much more from her.

The Concept of Physical & Nutritional Supports

People with physical disabilities often have conditions like cerebral palsy, spasticity and contractures of their extremities. Often, they are prescribed physical therapy for range of motion. There’s nothing wrong with that, but let’s look at it this way. We’ll compare weight loss to physical therapy to illustrate the concept.

Physical therapy is often delivered in doses to a person who needs modification of life-style 24 hours a day.

Consider a person who is morbidly obese. Doses of therapy, such as a 300-calorie meal three times a week, will seldom impact the problem unless movement and intake are modified 24 hours a day. Many clinical services are delivered in doses, but most major issues, such as obesity or recovery from a stroke, require a major alteration in lifestyle

With that in mind, consider a person who has a physical disability. They go to see a physical therapist for three doses of physical therapy per week. They then return home and are placed in a chair for the rest of the day before being placed in bed. That physical therapy is wasted and will have little, if any, impact on the health of the person. Ninety minutes of stretching a week compared to the remaining 9,990 minutes in the week spent sitting or lying down with little active movement just won’t do it.

Physical therapy is often delivered in doses to a person who needs modification of life-style 24 hours a day. Babies born with hemiplegia, the most common form of cerebral palsy, want to use only their good side and leave the involved side dragging behind. When they are forced to use the involved side from the get-go, within a year or so, one can often not tell that the toddler had a disability at all.

This makes the case for 24-hour planning that utilizes many forms of supports to get the function of a healthy body. It is not only up to the therapist or clinician to manage the person’s health. It is up to each person who supports them to understand the forms of support this person requires and how they fit in. Techniques to support people 24/7 are relatively easy to learn and to implement by all staff including direct support professionals when guided properly by a physical and nutritional supports plan. Rather than focusing on doses of therapy, we should develop a therapeutic lifestyle. It just makes sense.

Sexuality in People with IDD

February is American Heart Month. It’s the month where red attire is worn on the first Friday to bring awareness to heart disease in women. It’s also the month that includes Valentine’s Day, roses and romance. It’s the Valentine’s Day heart experience that we will talk about in this article.

Many people who have never supported persons with IDD think they are either asexual beings or it is simply wrong for them to have a sexual or romantic relationship. Even some people who support them think that is the way it should be too. After practicing in this field for almost 25 years, I can speak with authority that close friendships, love, romance, sex, marriage and having children do occur.

If a couple can both consent to a sexual relationship, there is nothing that should prohibit them from having a sexual relationship.

People with IDD have the same hormones that their typical peers have. Most generally have the same genitalia. Sexual desire is a natural occurrence related to hormonal stimulation and more than likely they are going to act on those desires and impulses. If a couple can both consent to a sexual relationship, there is nothing that should prohibit them from having a sexual relationship. This relationship can fall under the LGBTQ acronym as well as a heterosexual one. There are a couple of caveats–they both need the capacity to consent, verbally or through other means to show understanding and the couple must be educated on safe sexual practices and freedom from abuse and exploitation.

Sometimes, sexual release is found through masturbation for both males and females. This is OK too if it occurs in an appropriate private area. Knocking on a closed door AND waiting for a response that it is OK to enter, should be the standard for allowing privacy. If masturbation becomes obsessive, this can cause skin damage and a plan needs to be put in place not to stop the masturbation but reduce the incidences.

Relationships are not all sexual, but the couple may engage in hand holding, kissing, hugging or just sitting next to each other on the couch. This type of relationship is just as important as a sexual one. It may be impossible to tell if they love each other or are just happy being together. But, does it really matter? Both people receive caring gestures from someone else and it fulfills the desire to have a close connection with someone other than family.

Marriage and children are in the cards for some people. Counseling is suggested prior to marriage, so both go in with their eyes open and knowing what to expect. What if the marriage is not successful? Well, doesn’t that happen in many of their neurotypical peers as well? If having children is being considered, genetic testing is recommended in order to determine the types of genetic syndromes that may be passed on to the child.

Relationships are important in everyone’s life. Relationships can come in many shapes and sizes and one size does not fit all. It’s not “cute” or “precious” or “adorable,” it is two people finding someone that they can connect with in the way that fits them. It doesn’t matter if you are listening to your heart thump for health or thump for someone important, remember during American Heart Month that both are important.

Training for Real Life

I, like many of you, have sat through my fair share of boring trainings. Raise your hand if you dread that annual mandated refresher training. Me! I never thought that training would end up saving someone’s life…

Let me back up. I’ve worked as a DSP, House Manager, and QIDP here in Illinois. On that fateful day, most of the shift goes by relatively uneventfully. Around 2 a.m. you start going a little cross-eyed, right? So I took a break from rearranging the med closet and went to do hourly checks.

We had one resident in particular, Mellie*, who would awake periodically throughout the night so it was not uncommon to hear her up in her room singing or laughing at something on TV. She had just been on home visit two days ago with her sister so she had been in a particularly good mood the last few days.

If I didn’t do that refresher training and been aware of what to look for, Mellie may have become septic by morning and this story would be a lot different.

When I stopped by her door though I heard grumbling and decided to knock. Mellie was awake, tossing and turning in her bed, sweating, and appeared feverish. I asked if she was feeling alright and she said “no.” Okay, deep breath, don’t panic, what do I do first? I’m here all alone, it’s the middle of the night, how do I handle this? Call the nurse. Okay, but she’s going to want vitals so I need to get those first.

Back to the med closet. Four vitals, wait, what are they again? Blood pressure, pulse, temp, respiration rate. Thank you, nurse Sherry, for burning those into the back of my head during the refresher. Temp and respirations were both high, and when I went to get her blood pressure and pulse I noticed blue discoloration on her nails. Okay, wait. Fast breathing, fever, bluish discoloration… Pneumonia? A quick call to Sherry and 911 and off to the ER we went followed by a 5-day hospital stay due to aspiration pneumonia.

While on home visit, Mellie had briefly choked on some mashed potatoes. Since she recovered quickly with no reported discomfort or pain, her sister hadn’t thought to mention it. If I didn’t do that refresher training and been aware of what to look for, Mellie may have become septic by morning and this story would be a lot different.

These types of life and death calls are made every single day by frontline staff and are why it’s so critical that you have that second cup of coffee before attending a training and let this story prevent you from nodding off. 

*: Mellie is not the person’s real name, it was changed for privacy.

Eating Disorders

Eating disorders are generally considered and diagnosed in neurotypical people, but did you know they can affect persons with IDD as well? Although serious and sometimes fatal, they are treatable.

The person typically has an uncommon relationship with food. It can be portrayed in their actions, their justification for it or it can be their lover, comforter and friend. Eating disorders can also stem from distorted perceptions of weight and body image. Females are more often affected than males.

Many people do recover from eating disorders but may relapse during stressful periods in their life.

Anxiety, depression, substance abuse and obsessive-compulsive tendencies often occur in combination with eating disorders. Anxiety is the most frequently seen in connection with an eating disorder.

Here are some eating disorders that you may see:

  • Anorexia NervosaThis is identified by a significant weight loss and a skewed view of body image. There is often denial that there is a problem and the person doesn’t recognize the seriousness of the disease.
  • Avoidant Restrictive Food Intake DisorderThis describes a very, very “picky” eater which often results in a significant lack of nutrients and calories for cellular health and overall body health.
  • Binge EatingBinging is eating a large amount of food within 2 hours or less, significantly more than others would eat. The person has the feeling of loss of control during a binge and strong feelings of guilt and shame after the binge. Binge Eating is the most common eating disorder in the U.S.
  • Body Dysmorphic DisorderThe person focuses on one area on, or part of, the body and sees a serious “flaw(s). The area or “flaw” is generally not noticed by others. They feel ugly and deformed and “fat” when they are within their normal weight. They are constantly comparing their body to others and are obsessed with checking mirrors, excessive clothing changes and application of makeup.
  • Bulimia NervosaBulimia is binge eating with compensatory behaviors to eliminate the calories they consumed. These compensatory measures may be vomiting immediately after binging or taking excessive diuretics and laxatives. Bulimia is not necessarily about the food or its comfort, but more about body image.
  • NeophobiaNeophobia is the fear of trying any new foods and rejecting food when it is served before it is even tasted. This can sometimes be related to the presentation, form and smell of foods.
  • PicaA person eats nonnutritive substances for at least 1 month. The more severe the disability, the more likely it is for the person to have pica. Some pica can be related to nutrient and mineral deprivation, especially iron and zinc. Pica is strongly associated with disorders of the GI tract.
  • Purging DisordersPurging disorders occur in the absence of binging. Purging can take the form of self-induced vomiting, over-use of laxatives, diuretics or enemas.
  • RuminationIt is generally defined as chewing and re-swallowing prior ingested food. It can also be the voluntary and repetitive expulsion of regurgitated stomach contents. It can occur across the lifespan and is more common in persons with IDD. It is often misdiagnosed, in some cases 2 years. Generalized anxiety disorder often accompanies rumination.
  • Super TasterThis person has a sense of taste that is a higher intensity than others. A super taster typically has a more intense taste to bitter, fatty or very sweet items. They may eat more salt to counteract the bitterness. The person also may be very sensitive to hot, spicy food because pain receptors surround the taste buds.

The primary goal when treating a person with an eating disorder is to first treat the malnutrition and the underlying damage caused to organs when possible. Many people do recover from eating disorders but may relapse during stressful periods in their life. 

The Fatal Five Plus

By Karen Green McGowan, RN-BC and Craig Escude, MD, FAAFP

The term “Fatal Five” refers to the top conditions linked to preventable deaths of people with intellectual and developmental disabilities (IDD) in congregate care settings or in community-based residential settings. While the issues can differ in order of frequency depending on the population being represented, the conditions most likely to result in death or health deterioration for people with IDD are:

  • Aspiration
  • Constipation/Bowel Obstruction
  • Seizures
  • Dehydration
  • Sepsis

Another condition which is exceedingly common, frequently overlooked, and leads to significant health troubles in people with IDD is Gastroesophageal Reflux Disease, also known simply as GERD.

 

Let’s talk about each one of these in a little more detail:

Aspiration is usually listed as the most common cause of death in institutional settings, including nursing homes and large group care settings for people with IDD. Aspiration pneumonia is a common discharge diagnosis following hospitalization. It occurs when bits of food or liquids make their way into the windpipe instead of into the esophagus where it should be. Aspiration can occur during the swallowing process, but also occurs when stomach contents come back up the esophagus as a result of vomiting or gastroesophageal reflux.  It often begins subtly and damages increasing portions of the lungs. Feeding tubes, which carry their own increased risks, are often utilized in an attempt to bypass the swallowing process and reduce aspiration episodes, but are not always entirely effective. Other factors which may lead to aspiration are poor body positioning, particularly in individuals who cannot control their own movements well, and behavioral issues related to eating. One of the most common signs of aspiration is a cough noted during eating or drinking or shortly thereafter. When a cough is noted under these conditions an evaluation should be initiated to look for possible aspiration.

One of the most common signs of aspiration is a cough noted during eating or drinking or shortly thereafter.

Constipation and Bowel Obstruction are almost always at the top of the list of causes of illness and preventable death in people with IDD. One of the most important root causes of bowel obstruction is the use of multiple drugs with constipating side effects. Add to this the fact that most of us have dietary habits that contribute to the problem, chief among them, diets that are low in fiber and adequate fluids. Lack of mobility is a contributing factor to constipation, as well. We often see people on one or more medications to help improve elimination, but ironically, drugs intended to improve constipation often place the person at higher risk for impaired bowel function. Adequate active movement or exercise is also important to bowel function. Controlling these factors, along with training caretakers to recognize the signs and symptoms of bowel problems at the earliest moment can greatly reduce occurrences of illness or death from bowel obstruction.

 Seizure deaths can occur from episodes of prolonged, uncontrolled seizures as well as something called SUDEP or sudden unexplained death in epilepsy. For reasons that medical science has yet to explain, people who have epilepsy have a higher chance of dying suddenly unrelated to actual seizure activity. Drug toxicity and medication side effects can further impact the health and well-being of people who take these medications, and the balance between adequately controlling someone’s seizures and the risk of adverse drug reactions must always be at the forefront of the treatment plan.  Life expectancy for people with active seizure disorders has been shown to be up to 10 years less than those without epilepsy.

Dehydration is all too common and easily preventable in most cases. People who do not swallow well are particularly likely to refuse fluids or indicate fear when they get them, often resulting in dehydration. Dehydration is also likely when fluids are restricted in an attempt to prevent incontinence, not realizing that lack of fluids can contribute to constipation and increased seizure frequency, not to mention drug toxicity and other health problems. Awareness of fluid loss through sweating in warm and humid conditions or from loss due to vomiting or persistently elevated blood glucose levels in people with diabetes is important, as well. The presence of fever also increases a person’s fluid needs. Anyone supporting people with IDD should be aware of a person’s fluid requirements and work to ensure that they receive the necessary fluids to prevent dehydration.

Sepsis, sometimes called “the silent killer” is an ever-present threat to all. Sepsis is a condition which results from a significant infection in the bloodstream and the body’s response to that infection. Early signs of sepsis include fever, chills, rapid heart rate, low blood pressure and mental status changes.  Some of these symptoms are common with may illnesses, but one’s index of suspicion should remain high for worsening signs of a serious infection and referral for a medical evaluation should be considered earlier rather than later. The risk of death increases significantly for each hour that passes when sepsis is left untreated. Remember, “When  in doubt, send them out!”

Early detection and treatment of these conditions can lead to better health, lower risk of death and improved quality of life for people with IDD.

Gastroesophageal reflux disease (GERD) is the backing up of stomach contents, including acid, into the esophagus. GERD is frequently undiagnosed in many people, including those without disabilities, until major harm has been done to the bottom of the esophagus. Medications that cause constipation also contribute to GERD. Individuals who are overweight, particularly when they carry excess weight around the abdomen or wear clothing that is too tight have a higher risk of GERD. Ill-advised dietary choices, immobility and improper positioning also contribute greatly to the incidence of GERD. As this disorder continues without treatment, discreet or frank aspiration, life-threatening gastrointestinal bleeding and esophageal cancer become increasingly common. Recognizing signs of GERD, especially in people who do not communicate with words, is important to reduce the risks associated with this condition. People who exhibit food refusal, coughing when lying down, physical or verbal aggression particularly around meal times, or distress in the middle of the night may be telling you that they are experiencing GERD. Pica, a behavior where people eat things of non-nutritional value, may also be a sign of GERD and should prompt an evaluation.

Early detection and treatment of these conditions can lead to better health, lower risk of death and improved quality of life for people with IDD. Make it a priority to educate yourself, support staff, families, and those with IDD to recognize signs of these conditions and to seek medical consultation at the earliest signs of illness.

Obesity in America

Obesity has become so common in America, we think it’s normal when we see extremely overweight people. And, how do they find that many people to film the show “My 600 Pound Life” season after season?

Obesity is defined by the CDC as a BMI over 30 and severe obesity is a BMI over 40. Sometimes health care providers look at waist circumference as well. In women a waist circumference of > 35″ and males > 40″ is considered obese. We need to readjust our acceptance of obesity. Not because of the way the person looks, that is absolutely not what I mean, I mean the health concerns that obesity causes.

Many of the persons receiving supports may have a syndrome that is associated with obesity but we still need to manage the issue. Most of you are probably familiar with Prader Willi Syndrome and Down Syndrome (Trisomy 21). Both of these syndromes have a problem with obesity. Nevertheless, we can try to manage a person’s weight so that they are just a little heavy, but not considered unhealthy. Diet and exercise management is extremely important, not only to prevent weight gain, but also to manage constipation, hypertension, diabetes, bone health and many other conditions. Remember that eating is so much more than the intake of food, it is a social event, time for celebration and also the enjoyment of wonderful new foods.

Prader Willi Syndrome and Down Syndrome (Trisomy 21). Both of these syndromes have a problem with obesity.

Portion control, especially what we see in typical restaurants, is usually at least 2 -4 times more than the appropriate portion size. If we were served 1 cup of spaghetti on our plates, we would be very upset but that is the amount of pasta in a serving. Learning about and teaching portion sizes can be very constructive and this website from NIH is helpful. NIH Website.

Laboratory testing to monitor blood glucose, lipids, kidney function and other key indicators must be performed regularly to allow for early intervention when a problem is first identified. Face-to-face assessments with nurses in the community and the physician or a physician extender must occur regularly to help prevent increased death and other diseases.

Remember, the only person we can change is ourselves. But we can become positively contagious and set the example for others by eating in a healthy way at home with guests or if you go out to a restaurant. Be sure when shopping for food you go with the person receiving supports and teach them about portion sizes and how to read food labels. There are very simple and easy ways to teach portion control. Associate size with something they are familiar with in their environment, such as a cupcake wrapper or the tip of their finger or the palm of their hand.

I don’t know all answers to eliminating obesity, but this is a good start. 

Metabolic Syndrome and Health Impact

Taking a lot of medications is a very real problem among persons with Intellectual and Developmental Disabilities. One pharmacy that only provides services to persons with IDD indicates their average number of medications per person is in double digits! No person can consume that many medications without experiencing side effects, drug:drug interactions or drug:food interactions.

Oftentimes, the medications that are frequently prescribed are anti- psychotic medications. The first-generation anti-psychotic medications consist of drugs like Thorazine (chlorpromazine), Haldol (haloperidol) and Mellaril (thioridazine) among others. These medications have a nasty side effect of Tardive Dyskinesia or TD. TD is a very unpleasant side effect and can certainly bring social attention and embarrassment, but it generally has little effect on mortality. The second-generation anti-psychotic medications such as Clozaril (clozapine), Zyprexa (olanzapine), Risperdal (risperidone) and Abilify (aripiprazole) have a different side effect called Metabolic Syndrome. Unlike TD, Metabolic Syndrome can and does kill people.

Metabolic Syndrome is a cluster of disease processes. It consists of Diabetes Mellitus, Hypertension, Obesity, elevated Triglycerides and decreased HDL cholesterol. These diseases may be controlled, but often aren’t, due to either lack of awareness by health care providers, lack of aggressive treatment for persons with IDD, lack of ability to purchase high quality foods and plan nutritious meals or lack of compliance among persons.

It is critical that Metabolic Syndrome be managed and controlled to the best of our ability. Poorly controlled Diabetes Mellitus can cause blindness, kidney disease and failure, poor wound healing and loss of limbs. Hypertension that is not well managed can also cause kidney failure along with other serious and life-threatening conditions like aneurysms, strokes and heart failure. Obesity contributes to heart disease, the development of hypertension and diabetes and social unacceptance. Poor regulation of cholesterol and triglycerides increases stroke and heart attack risk.

It is critical that Metabolic Syndrome be managed and controlled to the best of our ability.

Laboratory testing to monitor blood glucose, lipids, kidney function and other key indicators must be performed regularly to allow for early intervention when a problem is first identified. Face-to-face assessments with nurses in the community and the physician or a physician extender must occur regularly to help prevent increased death and other diseases.

Early recognition of Metabolic Syndrome may save lives. All providers of services should remember that although the 2nd generation anti-psychotics are safer than the 1st generation, they are not without their own set of issues. Quite often these medications significantly improve the quality of life for a person with IDD, but the potential side effects must be recognized and managed.

Life Long Learning

Learning is generally a conscious act. We take classes, we read articles related to our work, we go to seminars or listen to webinars. Lifelong learning is a concept that we not only use in our lives to better ourselves, but it is built in to the support process for the people we provide services to.

One of the major things we do in our support is to teach and lead. Maybe you don’t think of yourself as a leader or a teacher. You might think that is the responsibility of the people above you, but you are wrong. All of us lead and teach, no matter what position we are in. It is often not a conscious act.

If we are yelling at another staff in a conversation, are we not sending a message (hence, leading or teaching) that it is OK to yell at someone else? But what happens if a person receiving supports starts yelling at their peer? Yes, you got it – we “reprimand” or correct them and give them a lecture on how that is not appropriate. I had to burst out in laughter one time when a direct support person said “Gayle is so darn bossy. She thinks she’s staff.” My reply was “And if she thinks she’s staff and is bossy, just who did she learn that from?” It took the DSP aback that the staff indeed were “teaching” Gayle to be bossy.

Learning doesn’t have to be boring and related to our work.

Not only do we need to provide lifelong learning to the persons we support, but we need to do this for ourselves as well. It keeps our brain active and engaged. Learning doesn’t have to be boring and related to our work. If you love to garden, learning more about ideal planting times, soil types, water requirements, light requirements, fertilizer and many other things will help make your endeavor more successful. Doing puzzles and yes, even video games, keep our brain active and helps maintain hand/eye coordination.

Lifelong learning is so important to all persons’ lives. It makes us all a better person, friend, teacher, leader, parent or spouse. I hope you all learn at least one new thing every day. It may be a very small thing, or it might be something that profoundly affects your life. The point is, always accept learning opportunities when offered. There are so many different ways to gain knowledge without ever opening up another school book.

Dementia and I/DD

We are all exposed to different syndromes every day in our work. A syndrome is a set of symptoms that consistently occur together. Dementia is like a syndrome but not all people lose the same skills consistently. With dementia, there can be a wide range of symptoms associated with a decline in memory or other cognitive skills that when presented together are severe enough to reduce a person’s ability to perform everyday tasks. You may also hear dementia referred to as Alzheimer’s Disease. Alzheimer’s is just one of many types of dementia, but it does account for 60% – 80% of the cases.

Alzheimer’s is just one of many types of dementia, but it does account for 60% – 80% of the cases.

In the neuro-typical population, we expect to see the onset of dementia after the age of 65. However, since persons with I/DD age quicker than neuro-typical peers, the onset of their dementia may occur at a much earlier age, some as low as 35 in certain I/DD syndromes and diagnoses. For a person with I/DD never assume that the changes they are exhibiting are part of their diagnosis or syndrome. Always know the baseline functioning of the person so you can pick up on subtle changes. The typical screens for dementia are generally not appropriate for persons with I/DD because often they never did know the answer to the question in the screening, not just since they started showing symptoms.

Some of the declines to watch for are:

  1. Confusion or problems with recent memory. Long term memory is generally not affected.
  2. Getting lost in familiar places.
  3. Wandering or elopement.
  4. Decline in ability to assist with or independently complete activities of daily living, including toileting.
  5. Inappropriate emotional response—crying when they are happy or clapping and smiling when there is a solemn occasion.
  6. Unable to follow simple instructions.
  7. Loss of ability to identify objects.
  8. Change in personality.

Anyone would dread such a diagnosis and may experience depression. Death is always the outcome of dementia. Disabilities, mental health and behavioral issues may become more difficult to manage. The dementia diagnosis may have an emotional effect on the staff as well. One might even see depression signs in the staff as they slowly lose someone who helps fulfill their life.

But we can make this whole dementia process more manageable and be proactive. Let’s find out the desires and dreams of the person and try our best to bring those to fruition. Let us do things and provide activities that will delight the person and bring happiness to all. Sometimes we have to be determined and dare to be a strong advocate for the person to continue to live an inclusive and fulfilled life until they are no longer able to do so.