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For clinicians, determining the etiology—or cause—of the problem should be paramount. Does the patient have difficulty chewing or swallowing due to the disease process? Does the patient pocket or spit out food or have problems with aspiration? Are there other medical problems developing such as infection or constipation? This detective work is necessary to determine whether the patient’s loss of interest in food is caused by advanced depression or an inability to interpret the sensation of hunger.1 Families become very distressed when their loved one refuses to eat. Our instincts tell us to provide nutrition to people who are ill. Food is symbolic of life and of love and of caring. But when a patient reaches the final stages of dementia, the body can no longer metabolize food, and food can stay in the digestive tract, causing nausea and vomiting. Certain food (especially meat) may not taste or smell good and may be difficult to chew. This is an expected progression, usually seen in the final stage of the FAST. Ultimately, the patient may prefer only liquids, and then nothing at all. When the patient is nearing the end of life, allowing him or her to refuse food is one of the hardest decisions facing families and clinicians, but it is the kindest thing we can do. Won’t Mom die if we don’t feed her?Here is where education comes in. Families need to refocus on what is really happening in advanced dementia. The Alzheimer’s Association provides wonderful resources to help families cope with and understand the changes they observe, particularly about eating. Providing adequate food and fluids during the various stages can be especially challenging to the family and the caregiver. Offering small meals that contain soft, sweet and cold foods seems to appeal to these patients. Ultimately, the disease process itself leads to reduced food and fluid intake partly due to declining perceptions of smell and taste, the inability to feed oneself, and feelings of loss of control and depression. Further, patients “may refuse to eat because of physiological or behavioral conditions, or they do so because they are at the end of life.” 2 By the final stage, the patient will have lost the ability to perform almost all activities of daily living. Eating is generally the last of the activities to be lost. Swallowing difficulties may lead to aspiration pneumonia and culminate in the patient being sent to the hospital. This is the time for the physician to educate the family about why the patient is no longer eating, clarify the disease progression and explain the burdens and benefits of starting artificial nutrition and hydration. Generally, this is when the family and physician decide on comfort care, and the physician makes a referral to hospice services. These conversations are never easy, but the expertise that the hospice nurse can provide is most beneficial to the family and other health care providers. What is artificial hydration and nutrition (AHN)?When I speak to families about the feeding alternatives they are considering, I always emphasize that feeding a patient artificially is not the same as eating and drinking is for the rest of us. Food is not chewed and liquids are not taken from a glass. The patient’s ability to perceive hunger may have been lost. Usually by this point, a swallow test has been administered and feeding the patient has been determined to be high risk. I review with the family the rationale for withholding the artificial route. We talk about the benefits and burdens, and they consider what their loved one’s quality of life will be. If the family is considering the insertion of a nasogastric tube, I caution them that most nursing homes in our area will not accept patients with one because of the continued risk of aspiration and excoriation of nasal mucosa. The other choice is a PEG (percutaneous endoscopic gastrostomy) tube, which is surgically implanted. Most people have never seen a nasogastric tube or a PEG tube, but it’s critical to understand the risks and potential discomforts for the patient before deciding on this course of action. Whatever method the family decides on, one thing is certain: once AHN has been started, it is more emotionally stressful to withdraw it—for both families and health care workers. Why is an advance directive important?AHN is a medical treatment, and as such, it can be refused. I have seen families struggle to determine “what Mom would have wanted” when faced with feeding dilemmas. Ideally, patients have stated, in advance, what care they would and would not want in the event they are unable to speak for themselves. Unfortunately, this is not always the case. In an article published in 2007 in the Journal of the American Medical Association, the author states: “Advance care planning plays a critical role in feeding decisions. The lack of advance directives is a consistent risk factor associated with feeding tube insertion in dementia. Clinicians have an opportunity to prepare patients with early disease and their families about what to expect in the later stages of dementia, including eating problems.”3 In the absence of an advance directive, clinicians must advocate for the patient. What is in the patient’s best interest? Are we prolonging life, or prolonging death and suffering? Although emotionally charged, these conversations are highly beneficial—and crucial—for families who are struggling to find some balance. Families of patients with advanced dementias need education from clinicians when the desire to eat stops. As clinicians, we need to discuss, in clear terms, the etiology of the disease process and the expected progression. We are the trusted professionals. Together we can provide the guidance, the support, and the continuity of care (regardless of the decision) that our patients and families deserve. Celebrating Life!
![]() I have decided to make a former client my role model. I met him half a dozen years ago, when he was in his early eighties and moving to a retirement community. As we began planning his move, he said, “I lost my wife three years ago. Sorting through our belongings makes me feel like I am losing her all over again?I wish I could go away and come back after the move.” And so he became our first “I’d rather go on vacation” client. Since then, I have often thought about his ability—and his willingness—to articulate his feelings and take a course of action that worked for him. I met him again several years later and learned that he had moved to a different apartment in the community, to be near a woman he had met. “She introduced me to the literary club,” he said. “It consists of me and five women. We meet every Thursday before dinner, laugh, drink and talk about no literature.” Then he continued, “She is a very interesting woman—an artist." The door to her apartment, across from his, bore a sign, "Outrageous older woman lives here.” He introduced me to her. The sign was appropriate. The former director of a multi-hospital system, he still taught in the graduate program he had helped found at a nearby university and had lunch with current and former students regularly. Before I left, he confided, “This move [to the retirement community] has so exceeded my expectations. I never expected that my ninth decade would be so rich, stimulating and enjoyable.” I met with my former client again a few weeks ago. Sadly, I learned that his friend the artist had passed away. He was on his way to the chess club, where he and other members met regularly with the chess club of an inner city high school. He was leaving soon, he explained, for the second half of an oral history project conducted by the American Hospital Association. They had interviewed him in 1980 in recognition of his leadership role in the industry, and they wanted to meet with him again, twenty-eight years later. In preparation, he was reviewing his professional accomplishments since that time. I thought to myself, the oral history people have it all wrong. What is important here is not his contribution to the health care industry; it’s the way he lives life now. A typical baby boomer, I plan to work forever, but when I am in my eighties, I hope I’ll have the same comments about my ninth decade, and that I will form new, meaningful relationships, laugh, and give back to others. A legacy is not something you leave, I have decided, it’s something you make. My former client is my role model because he has made a great one. I hope I can do the same. ![]() A Caregiver’s Guide to Alzheimer’s Disease: 300 Tips for Making Life Easier, authored by Roger Brumback, Patricia Callone, Connie Kudlacek, Janaan Manternach and Barbara Vasiloff, was recommended to me by Natalie Davis, who instructs activity director certification courses, and whose father died of Alzheimer’s disease a year ago. The book is divided into three sections: tips for making life easier during the progression of the disease, helpful information about Alzheimer’s and related dementias, and resources for people with Alzheimer’s as well as their caregivers and loved ones. The book identifies seven key functions of the brain in the pre-Alzheimer’s stage. These functions deal with memory, language, complex tasks, social skills, judgment and reasoning, ambulation, and the senses. During the normal aging process, a person experiences a slowdown in these functions. Dementia, however, causes a progressive loss in all of these areas. The caregiver must nurture the skills that remain, whether they are cognitive, social or physical. In addition to the pre-Alzheimer’s stage, A Caregiver’s Guide to Alzheimer’s Disease breaks down the stages of the disease and discusses the changes that occur in the brain, which affect behavior. The book also offers practical tips for maintaining quality of life as much as possible, and mentally engaging a person with Alzheimer's to help slow cognitive decline. The recommendations below have been excerpted from the book. Following are some games that can help preserve the cognitive abilities of a person who has Alzheimer’s. Try engaging that person’s memory by having him or her:
The ability to perform complex tasks that were learned early in life can remain late in the disease progression. Help the person with Alzheimer’s by nourishing the skills that remain. Some of these may involve:
Here are a few caregiver tips for making life easier when caring for an Alzheimer’s patient:
Internet ResourcesFollowing are some helpful online resources for caregivers of people with Alzheimer’s.
![]() Extra! Extra! Read all about it! Surprising new guidelines from the American Academy of Pediatrics suggest that children as young as eight should be started on cholesterol-lowering drugs. Not surprisingly, cholesterol has become one of the most popular topics of conversation in my office. Patients are worried about reaching that “magic number” on their lab test and are also concerned about the side effects of medications used to attain it. An abnormal cholesterol level is most often a symptom of an underlying imbalance in the body. In naturopathic medicine, we look for the imbalance, which is often lifestyle-induced, and work to correct it. Once this happens, the body lowers or raises cholesterol to that magic number on its own. Yes…I said “raises.” Cholesterol can be too low. What the Heck is Cholesterol, Anyway?Cholesterol is a waxy, fatty substance that is made and regulated by our livers. I often ask patients, “Why would your liver try to kill you?” This usually gets a chuckle, but more importantly, it allows a patient to pause and think. Is this the Great Liver Uprising of 2008? Is it a liver conspiracy to take over the world? No! Naturally, our livers are not trying to kill us. They are trying to help us. So, why are all these livers elevating cholesterol? Why are our bodies going through all the trouble of making cholesterol? Because it is an incredibly important substance to have around. That’s why. What Has Cholesterol Done for You Lately?The body will increase output of cholesterol when it senses a need for it. Here are just some of the important functions of cholesterol:
So, you see, cholesterol is not all bad. It boils down to this: if you struggle with high cholesterol, your body is trying to tell you something. Are you listening? Let’s continue the discussion next month. Until then… Take care of your (whole) self— Amy Bader, ND ![]() In part 1 of this series on the disposal of adult diapers, I discussed what materials—and how much of those materials—are ending up in the landfill via used adult disposable diapers. In this post, I want to examine the disposal and potential compostability of these used diapers, pads, underpads, liners and other incontinence products. For most incontinence product users, the process of disposing of adult diapers is the same as it is for those disposing of children’s diapers; most national waste management companies allow consumers to simply put used diapers into the waste stream along with other garbage (check with your local waste management company to be sure they do not have some special requirements). Given the numbers I mentioned in my last post, that’s a lot of dirty diapers. However, if there is one bit of good news here, it is this: viruses contained in human feces have not yet shown any danger to waste collection workers based on current collection methods. These diapers are thrown away for one major reason: it is ?the norm.? To date, there are no truly compostable diapers available on the market, although the technology to make such diapers does exist. In my opinion, the technology can—and will—only work if government regulation requires diaper manufacturers to produce such products. Why? Simply put, even if all of the non-compostable products (e.g., petrochemical plastics, glue, tapes, etc.) in adult diapers were replaced by compostable materials, waste management companies would have to be assured that each and every diaper entering the waste stream was completely compostable, and free of non-biodegradable materials. Moreover, the process for full compostablility will only work if there is 100% compliance by all manufacturers to produce a diaper that is 100% compostable. Otherwise it will be nearly impossible for waste management companies to process this stream of dirty diapers. As consumers, all that we can do for now is to encourage our federal, state and local governments to recognize the amount of non-compostable trash being generated by the users of adult disposable diapers and to propose proactive solutions. The industry knows of the technology to completely eliminate this issue. However, as I’ve stated before, I am no expert on this matter and welcome all comments from readers, informed individuals and bona fide experts. Next time I’ll tackle how incontinent product users can help the environment, reduce the carbon footprint left by disposable diapers, and save money at the same time. Your Partner in Comfort, Gary
![]() Reverse mortgages understandably have their fair share of both advocates and critics. A financial tool to help seniors pay for home improvements, stay in their home, and increase their standard of living, the downside of reverse mortgages is that the cost can be high. I recently met with a family who asked me to help them talk with their aging parent about moving. The senior and her adult children shared with me their concerns about why they thought it was a good time for her to move. The mom—let’s call her Susan—recognized she needed some help with preparing meals and housekeeping, but really wanted to stay at home. The challenge was finding the money and the services to help Susan stay home for as long as possible, and in a way that would meet her daily needs and give her family some peace of mind, knowing that she would be safe. This gave us the opportunity to talk about reverse mortgages. First, to be eligible, you must be over sixty-two years of age, own your home, and be living in it as your primary residence. The amount you are eligible for depends on your age, interest rates and the value of your home. Most reverse mortgages are set up so the home owner can receive monthly payments. Advantages
Disadvantages
Possible Alternatives
As a potential consumer of any financial tool, be cautious and seek out accurate information before making a decision. If you are looking for information on reverse mortgages, I suggest you talk with a HUD counselor or someone impartial. Reverse mortgage officers may be prone to selling only the advantages since they get paid when you take out a reverse mortgage. Real estate agents may be prone to selling only the disadvantages of them, as they get paid when you sell your home. Your best bet is to find an impartial advisor such as a financial planner (whose brokerage doesn’t sell reverse mortgages), an elder law attorney or a certified reverse mortgage counselor, all of whom will be able to share practical information to help you make your decision. Here are a few links of interest to help you get started: Find a HUD-Approved Reverse Mortgage Lender ![]() Affordability is a key ingredient in any successful long-term care plan. That is why the premium cost is often the most important factor to consumers who are considering the purchase of LTCI. “Will My Premiums Ever Increase?”One of the most common questions I hear is: “Will my premiums ever increase?” The answer is this: there are a couple of scenarios in which LTCI premiums could increase. I will try to explain one in this article and follow up with the second in a future article. The first scenario involves a choice the policyholder makes regarding inflation protection. Most LTCI policies have automatic inflation protection built into the policy design from the beginning; in such cases the premium is designed to stay level for the life of the policyholder. The benefits increase each year, but the premium remains the same. Inflation Protection: What You Need to KnowSome insurance carriers offer a different kind of inflation in which the policyholder starts out with no automatic inflation protection; instead, benefit increases would be offered every three years or so. These increases can usually be accepted or declined by the policyholder. This means that your premium would increase every three years for the rest of your life or until you start receiving policy benefits. The problem with this inflation protection choice is that the policyholder is three years older when each offer of extra benefits is made. The cost of the added benefits is based on the later age, not on the age of the policyholder at the inception of the policy. This can result in a significant increase in premiums in later years. Some consumers simply drop these policies after a while, as they just can?t afford to continue paying premiums that are so much higher than the cost of the original premium. Long-term Effects of Premium IncreasesGroup policies often offer this kind of inflation protection to stay competitive with individual LTCI policies. Before finalizing their decision, it is very important for consumers to understand the long-term effects that these premium increases can have. Unfortunately, I see many policyholders who did not understand the ramifications of this kind of inflation protection when they purchased their policy. They sometimes find themselves locked into a policy that is constantly increasing in price and have few options for switching to a more affordable LTCI product due to their age and/or health circumstances. It is true that automatic inflation protection increases that are built into the premium cost from the inception of the policy will initially be more expensive than a periodic increase offer. But in my opinion, in most circumstances, it is better to lock in your inflation protection costs at an early age, and know that your premiums will remain stable, than take the chance on an ever-increasing premium that may eventually be too much to afford. Until next time Duane
Read more about long-term care insurance (LTCI). ![]() I believe activities are crucial to well-being. In the past ten years, research has shown that activities play a large part in preventing the progression of dementia. We also know that socializing prevents loneliness, despair and suicidal thoughts. For several years I led recreational activities on weekends at a geri-psych hospital. The activities that took place on any particular weekend greatly depended on the patients in the unit at that time. All of the patients there had dementia and behavior disorders that precluded their being able to remain at home until the behavior had been extinguished. Most patients were on the unit between three to four weeks, while the doctors changed their drugs or the dosages. Some were more alert; others were more physically functional. Some returned home; others returned to a nursing home or entered a long-term care facility for the first time after discharge. There are many activities that are appropriate for people with dementia. The only guideline is to not degrade them by having them do children’s activities. Instead, show your respect by engaging them in pastimes that are similar to children’s activities but suitable for an adult, retaining whatever qualities that make the activity fun. Here are some suggestions for caregivers who have a dementia patient at home. Puzzles & GamesTry:
Photo & Scrapbooking Activities
Housework
Gardening Activities
Seasonal Decorating
Activities Involving Humor
Sorting & Organizing ActivitiesSort or organize:
Cooking & Activities in the Kitchen
Reading ActivitiesRead out loud or simply look through books and magazines that can lead to discussions. Try:
Reminiscing with Memory BooksYou can find blank memory books in the baby section of a bookstore. These usually pose questions that will prompt discussion. Here are a few suggestions:
The list above is not all-inclusive. Hopefully it will give you some ideas for getting started. Think about the kind of activities the patient has always enjoyed. Those are probably the best ones to start with. I’ll close with a few more ideas. If the care recipient enjoys building things, try assembling model kits of airplanes or cars. A simpler activity could be making strings of paper clips, using different colors and sizes. Patients who have an artistic side may enjoy painting or coloring in one of Dover’s many stained glass coloring books. Musically inclined patients might enjoy singing along to patriotic songs, hymns and old favorites, or playing rhythm band instruments. Did the patient used to enjoy sewing or mending? Offer some pants that need hemming or items of clothing that need buttons sewn on. Remember: people with dementia can still derive enjoyment from activities they have always enjoyed. Give it a try! ![]() Jill Gilbert, our CEO, just finished up her tenth article for McKnight?s Long-term Care News, the eldercare industry?s leading magazine. In her monthly articles, Jill tries to raise awareness and spotlight new and innovative ideas in the eldercare industry by highlighting facilities and people who are outstanding at some aspect of serving the senior population. The articles just keep getting better with discussions on food/menu choices, building a solid care team, Green House projects, Kiwanis International clubs and much more. Not only do all of us at Gilbert Guide like to point out excellence and quality care, but also we hope that by doing so we inspire and set higher standards for eldercare providers across the country.
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