“A Family Guide for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss,” by Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH, 2017
An easy-to-read guide, covering everything, on how to care for someone with dementia. Reading it makes me realize that Mom is not even close to “there” yet. I would say she has “Mild Cognitive Impairment” now. If it worsens into dementia, then major decisions will need to be made. Preferable for her to remain in her home as long as possible. Change is not good. When can she no longer drive? When should she no longer be living alone?
The way the book is organized didn’t seem right – I thought Chapter 17, Preventing and Delaying Cognitive Decline, should have been Chapter 1. The first 16 chapters go in-depth on how to deal with someone with dementia. Mainly, be loving and caring and patient. Get help so you can remain loving and caring and patient. Don’t care about being right. The person’s brain is diseased; they cannot help many of their behaviors.
The style was conversational so you can really fly through the chapters. There is a lot of info packed into each page but so much doesn’t apply to us right now. I need to look at the Larimer County Office on Aging, because the main things we need to watch for are when she can no longer drive and when she can no longer live alone – see what kind of options they have for “aging in place” so she can stay in her home safely. We also need to see what her Long Term Care Insurance covers.
Here are tidbits of information from the book:
In Chapter 1: The Brain, Behavior, and Personality: “Behavioral and psychiatric symptoms are often caused by damage to the brain and are not something the person can control or prevent. Behavior that upsets you is rarely deliberate and almost never intended to “get your goat.” Because the brain itself is damaged, the person is severely limited in his ability to learn things or understand explanations. It is futile to expect him to remember or learn and frustrating to both of you to try to teach him.”
In Chapter 3: Characteristic Behavioral Symptoms in People Who Have Dementia: “Although there is still an enormous amount to learn about how this process works, when people who have dementia say or do things that don’t make sense or that seem nasty or deliberate, it is almost certainly the brain damage at work…Do the best you can; regard problems as the result of the brain damage, not as something you caused or something the person who has dementia intended. Affection, reassurance, and calm are best, even when things make no sense.”
In “Caregiving: Some General Suggestions:” “Share your concerns with the person who has dementia. When a person is only mildly to moderately impaired, he can take part in managing his problem. You may be able to share with each other your grief and worries. Together you may be able to devise memory aids that will help him remain independent. … Maintain a sense of humor. It will get you through many crises. The person who has dementia is still a person. He needs and enjoys a good laugh too. … Try to establish an environment that allows as much freedom as possible but also offers the structure that people who have dementia need. Establish a regular, predictable, simple routine for meals, medication, exercising, bedtime, and other activities. … Change routines only when they aren’t working. Keep the person’s surroundings reliable and simple. Leave furniture in the same place. Put away clutter…. Have an ID necklace or bracelet made for the person who has dementia and consider a wearable tracking device. Include on it the nature of his disease (for example, “memory impaired”) and your telephone number. This is one of the single most important things you can do. … Accept that lost skills are gone for good….Know that even small amounts of excitement–visitors, laughter, changes–can upset the person who has dementia, but plan interesting, stimulating things within his capabilities (a walk, visiting one old friend). Look for ways to simplify activities so that a person can continue to be involved within the limits of his abilities (the person who can no longer fix a whole meal may still be able to peel the potatoes). Look for things the person is still able to do and focus on them….Consider having a trained person come to the home to visit the person who has dementia or trying a group program such as day care designed for people who have dementia…Give priority to keeping the person who has dementia calm and comfortable.”
In “Memory Problems:” “People who have dementia forget things quickly. For the person with memory impairment, life may be like constantly coming into the middle of a movie: one has no idea what happened just before what is happening now. People with illnesses that cause dementia may forget what you just told them, may start to prepare a meal and then forget to turn the stove off, and/or may forget what time it is or where they are. … Remember, however, that with an illness that causes a progressive dementia, the person will eventually be unable to read or will not be able to make sense of what he reads. … As the disease progresses, the person will be unable to remember what you tell him even for a minute. You will need to repeat yourself and remind and reassure him over and over.”
People with dementia may overreact or have “catastrophic reactions.” It’s best to keep things quiet and routine. If they have a catastrophic reaction, stop whatever you are doing, let the person calm down, remain calm yourself, and remove them from the situation in a quiet, unhurried way.
“If the person is having difficulty finding the right word, it is usually less frustrating for him to have you supply the word for him than it is to let him search and struggle for the word. When he uses the wrong word and you know what he means, it may be helpful to supply the correct word. However, if doing so upsets him, it is better to ignore it.”
“When a person repeats the same thing over and over, try distracting him. Change the subject, ask him to sing a familiar song, or talk about the feelings behind the statement.”
“Even when a person is unable to communicate, he still needs and enjoys affection. Holding hands, hugging, or just sitting companionably together is an important way to continue to communicate.”
In Chapter 4, Problems in Independent Living, they describe Mild Cognitive Impairment: MCI. “The most common identifying symptom is a complaint of memory difficulties, but some people with MCI have normal memory but impairments in some other aspect of their thinking. Ten to 12 percent of individuals with MCI develop dementia in each subsequent year for at least five years.”
“When a diagnosis of mild cognitive impairment has been made, the uncertainty of the future is a challenge since as many as 25 percent of people who receive this diagnosis in research studies return to normal within a year. For this reason we suggest that people with MCI stay as active and busy as possible and focus on activities they can enjoy.”
Under, ‘When A Person Can No Longer Drive Safely,’ they say to look at the skills necessary to drive safely: “There is some controversy over whether a person who has dementia can continue to drive in the early phases of the illness. No test score can determine this, but a trained occupational therapist can evaluate driving skills. To decide whether the time has come, look at the skills that a person needs to drive safely and evaluate whether the person still has these skills–both in the car and in other situations. Good vision…Good perception…Good hearing…Quick reaction time…Ability to make decisions…Good coordination…Alertness to what is going on around one…” “The “grandchild test” is one way to decide whether a person should still be driving. If you would not let a person drive your child or grandchild, then she should not be driving.”
Under When A Person Can No Longer Live Alone, they recommend you look for the following signs: “Changes in Personality or Habits…Is the person able to manage her own personal care and grooming?…Phone Calls…Do conversations ramble, or does she seem to forget what she was saying? Does she repeat herself?….Meals and Medications: Is the person eating her meals and taking her medications correctly?…If the person is safe in other ways, she may be able to live alone if someone else helps daily with food and medicine, but it has been our experience that people who forget to eat properly are experiencing sufficient cognitive impairment that they very likely cannot safely live alone….If you suspect that the person is forgetting to turn off the stove, you must intervene.
“Is the person keeping the house tidy, reasonably clean, and free of hazards? The person may spill water in the kitchen or bathroom and forget to clean it up, creating a fall hazard for herself. Sometimes people forget to wash the dishes or forget to flush the toilet or in other ways create unsanitary conditions. If the house is badly cluttered, they can trip and fall. A person who has dementia may pile up newspapers and rags, which become a fire hazard. Does the house smell of urine? These are signals that the person is unable to manage alone or is ill.”
“Is she donating money to questionable causes? Is she sending money to every charity that sends her an appeal in the mail, even if she is uninterested in its work? Does she repeatedly send money to the same charity because she forgot she had already donated?”
Wayne read this paragraph and took note: “The person who is developing dementia is dependent on a familiar setting to provide her with cues that enable her to function independently. Learning one’s way around in a new place is difficult and sometimes impossible. She feels dependent on familiar surroundings to survive.”
However, “If people who have dementia move before their illness becomes severe, they often adjust better to their new environment…”
Under Meaningful Activity, they say: “Most experts urge people who have dementia to exercise or do things that keep their minds active. There is some evidence that staying mentally and physically active can help postpone the onset of dementia for people who do not have thinking impairment. However, once an illness that causes dementia has begun, keeping physically and mentally active may slow progression…”
Under How Caring for a Person Who Has Dementia Affects You, they have a sub-section called, Worry. I find the whole section helpful but this in particular: “Most of us have also discovered that the kind of worrying we do when we lie awake at night does not solve the problem, but it does make us tired.”
“Sometimes, of course, ignoring the problem can endanger the person who has dementia (for example, if she is driving or living alone when she cannot do so safely.)”
“A general power of attorney becomes void if the person who granted it becomes mentally incapacitated. A durable power of attorney authorizes someone to act on behalf of people after they become incapacitated and unable to make their own decisions.”
“In 2016 nursing home care averaged more than $80,000 per year. The cost of assisted living was less, averaging $36,000 per year. There is no public source of funding designed to assist with this cost. Payment comes from the resident’s own income (such as a pension) and assets (such as a home and investments), the family’s financial help, long-term care insurance (limited), Medicare, and Medicaid. Medicare pays only for short periods of time for the treatment of serious and acute illnesses. Medicaid pays only for the care of people who are impoverished. With such high costs, middle-class people in nursing homes deplete their resources within a short time and will need Medicaid. However, federal and state policies are very restrictive…”
“Assisted living facilities (also called residential care communities) provide a room, meals, supervision, activities, and assistance with tasks such as dressing, eating, and bathing, but they usually do not provide nursing or medical care. Residents usually must be able to walk and to participate in their own care. These facilities may be more homelike and less like a hospital than a nursing home. They may also be less expensive. Some of them are an excellent option for people who have dementia; others are not. Some specialize in care of people who have dementia. Many supervise medication, and some have daytime medical care available in the building.”
“The web site www.medicare.gov/NHCompare can help you compare nursing homes in your area.”
“Some people have purchased long-term care insurance in advance of the time that they become ill. Find out if a long-term care policy exits, and read it carefully. Some policies will pay part of the cost of care in the person’s home, which might enable you to keep the person who has dementia at home if you wish to do so. Some pay for care only in specific kinds of long-term care facilities and may have certain exclusions. Most will pay only a portion of the daily cost of long-term care. While such insurance helps, you will probably need other sources of funding as well.”
“Sometimes a person is so ill that he cannot talk or recognize you or respond to you. It is hard to know what to say to such a person. Try holding hands, rubbing the person’s back, or singing. Once minister said this about his visits:
“I’ve grown in these visits. I am so used to doing, doing, doing, that it took me a long time to accept that there is nothing I can do for people who have dementia. I’ve learned to just sit, to just share being and not to feel I have to do or talk or entertain.”
In Chapter 17, Preventing and Delaying Cognitive Decline:
“Usual Age-Associated Changes: … Jane worries because she finds herself doing things like walking into the kitchen and then not being able to remember why she went there. This kind of absentmindedness, sometimes called “a senior moment,” is not a sign of impending dementia.”
“…As we age, the brain remains as able as ever to process information, evaluate its meaning, and decide on a course of action based on what it has processed, but it does so more slowly. This partly explains why it takes longer to remember words and facts in later life. It is best dealt with by taking one’s time and not being rushed when trying to remember something or making a decision.”
“Difficulty coming up with names and words is the second change associated with normal aging…”
“A person with a normally aging brain uses hints to retrieve information from memory. For a person who has dementia, hints do not help with recall…The memory is “gone” and does not significantly improve with hints or cueing.”
Under Risk Factors Identify Potential Targets and Possible Approaches for Decreasing the Risk of Dementia, these are discussed:
Cardiovascular Factors (high blood pressure in mid-life, high cholesterol, and obesity are risk factors for developing Alzheimer disease and vascular dementia.)
Lack of physical exercise – CDC recommends 30 minutes of physical exercise 5 days a week. “Even a short walk every day is good for you…Several studies suggest that regular physical exercise may slow the progression of dementia and can help reduce agitation in people who have dementia.”
Those who are socially active are less likely to develop dementia.
“Several recent studies have supported the idea that following a Mediterranean diet delays the onset of dementia…Antioxidants are also promoted as potential dementia preventers. No studies have shown them to be preventive, but they are known to prevent brain damage in studies of animals and cell cultures. Fruits, such as blueberries, that are high in antioxidants are part of a Mediterranean diet.”
“Education early in life is associated with a lower risk of dementia.”
Diabetes is a well-established risk factor for developing Alzheimer’s.
“Depression in early and mid-life is a risk factor for developing dementia and Alzheimer disease.”
Regarding Aluminum: “Aluminum has been found in larger-than-expected amounts in the brains of some people who have Alzheimer disease. It now seems most likely that this is a result of whatever is causing the dementia, rather than a cause of the dementia.”
“People sometimes wonder if they should stop taking antacids or stop cooking in aluminum pans or using deodorant–all sources of aluminum. There is no convincing evidence that the use of these products is a cause of dementia. Treatments that promote the elimination of aluminum and heavy metals from the body do not benefit people who have Alzheimer disease, and some of these treatments have serious side effects.”
“Head Injury: Repeated concussions are known to increase the risk of dementia.”
“Age: Older age is the strongest risk factor for developing Alzheimer disease.”
“Genetics: Genetics contributes between 35 and 65 percent of the risk of developing Alzheimer disease and frontotemporal dementia. Genetics contributes less to dementia with Lewy bodies and dementia due to Parkinson disease.”
“Medications: The drugs currently approved to treat Alzheimer disease–cholinesterase inhibitors (such as Exelon, Razadyne, and Aricept) and memantine (Namenda)–do not prevent or slow down the biological progression of the disease. Many other drugs seeking to do so are in development, but none has been proven effective yet.”
In Chapter 18: Brain Disorders and the Causes of Dementia, they describe “Mild Cognitive Impairment:”
“The term mild cognitive impairment, or MCI, refers to the problems experienced by individuals who report memory difficulties and are found, on examination, to have mild memory impairment but who do not meet the criteria for dementia (described below).”
“Mild cognitive impairment appears to be the beginning of most diseases that cause dementia, including Alzheimer disease. Follow-up studies have found that 5 to 12 percent of individuals with MCI develop dementia each year after the diagnosis has been made, but even after five years, 40 to 50 percent either remain in the MCI category (that is, their symptoms have not progressed) or have improved and returned to normal cognition. Some people diagnosed with MCI return to normal within the year after the diagnosis is made. Presumably, they had a reversible cause such as a transient illness, a medication, or depression.”
“Most of the diseases discussed in this book progress slowly, and it can be difficult to tell the difference between the mild memory changes associated with normal aging and the very earliest symptoms of dementia. Even so, researchers have begun to study the earliest symptoms of the diseases that cause dementia, because early diagnosis will become important when better treatments are developed to prevent dementia. Among the methods of early diagnosis that are being studied are PET scans that use radioactive markers to identify brain amyloid; MRI scans that identify more rapid brain shrinkage than is normal; neuropsychological testing; blood, urine, and spinal fluid tests for protein markers of Alzheimer disease, and combinations of these.”
Dementia: “Dementia is the medical term for a group of symptoms. It has three characteristics: (1) two or more areas of intellectual ability are sufficiently impaired that daily functioning is interfered with; (2) the symptoms begin in adulthood; and (3) the person is awake and alert, not drowsy, intoxicated, or unable to pay attention.”
“The declines in intellectual functioning can affect any mental process, including mathematical ability, vocabulary, abstract thinking, judgment, language, and the ability to perform actions that have multiple steps. “Not feeling quite as sharp as you used to” does not mean that you are developing dementia. The person’s ability must decline enough from what was normal for him to interfere with daily functioning.”
Prevalence of Dementia: “Between 8 and 12 percent of people over age 65 suffer from dementia. At age 65 the rate is only about 1 percent, at age 75 the rate is about 10 percent, at age 80 the rate is 20 to 30 percent, and by age 90 the rate is 30 to 50 percent. Dementia beginning before age 60 is rare.”
“Alzheimer disease and frontotemporal lobar dementia always cause dementia. There are many other diseases [probably more than 80] that sometimes cause dementia.”
Alcohol Use Disorder Associated Dementia: “People who have a history of drinking problems are at increased risk of developing dementia, though we don’t know why…The person can express himself well (language is rarely affected), but memory impairment, personality change, irritability, and explosiveness are common.”
Alzheimer Disease: “Alzheimer disease was first described by a German psychiatrist, Alois Alzheimer, in 1906, and the condition was named for him. … The symptoms of Alzheimer disease usually develop very gradually, even imperceptibly…early in the illness memory impairment is the problem noticed by people with the illness…The person is more than a litle forgetful. He may forget appointments or conversations that had taken place several hours or days previously. He may have difficulty learning new skills or difficulty with tastks that require abstract reasoning, such as making financial decisions. He may have trouple handling problems at work, or may not enjoy reaing as much as he used to. His personality may change, or he may become depressed. Examination by a clinician knowledgeable about the illness will reveal impairments in more than just memory, but these may not yet interfere with daily functioning.”
“Later, impairments are seen in speaking abilities (language), doing everyday activities, and perceiving or visually processing the world. These symptoms are often not noticeable until the person has had the illness for three years. At first he will be unable to find the right word for things or will use the wrong word, but later he will gradually become unable to express himself. He will also have increasing trouble understanding explanations. He may give up reading or stop watching television. He may have increasing difficulty doing tasks that once were easy for him. His handwriting may change, or he may become clumsy. He may get lost easily, forget that he has turned on the stove, misunderstand what is going on in conversation, and show poor judgment. His personality may change, or he may have uncharacteristic outbursts of anger. He will be unable to plan responsibly for himself. Families often do not notice the beginnings of language and motor problems, but as the disease progresses, these symptoms become apparent.”
“Late in the illness, usually after six or seven years, the person becomes severely impaired both physically and cognitively. Incontinence and inability to walk are common, and falls become a frequent occurrence. He may be unable to say more than one or two words and may recognize no one or only one or two people. He will need nursing care from family and friends or from professionals. He will be physically disabled as well as intellectually impaired.”
“Alzheimer disease usually leads to death in about nine to ten years, but it can progress more quickly (three to four years) or more slowly (more than twenty years).”
“At autopsy, changes can be seen, under a microscope, in the physical makeup of the brain of a person who had Alzheimer disease. These changes include large numbers of two distinct microscopic structures called neuritic plaques and neurofibrillary tangles (see Chapter 19). They indicate direct damage to brain cells and their connections. A clinical diagnosis of Alzheimer disease can be made by a specialist during life on the basis of the types of symptoms a person has, the way the symptoms have progressed over time, the absence of any other cause for the condition, and a compatible CT, MRI, or PET scan. However, a definite diagnosis of Alzheimer disease requires the presence of these specific abnormal structures (neuritic plaques and neurofibrillary tangles) throughout the brain, which at this time can be confirmed only by autopsy. Several blood tests and spinal fluid tests have been developed, but at present they are only slightly more accurate than a diagnosis based on the person’s symptoms.”
In Research in Dementia, “We can change the quality of life for some people who have dementia by making changes that help them to function as well as possible, reducing their anxiety and fear, and helping them to enjoy things sometimes.”
In Protective Factors, “Identifying environmental and genetic factors that lower the risk of dementia might lead to population-based strategies that prevent dementia from ever developing. Among the areas being explored are diet; physical, social, and mental activity; and avoidance of stress. Several studies suggest that low cholesterol, small amounts of alcohol, and protective headgear when engaging in activities carrying a risk of head injury might protect against or delay the onset of Alzheimer disease.”
Here is the last paragraph of the book, under One Disease or Many?
“At present, the evidence suggests that 40 to 60 percent of the risk of developing Alzheimer disease is genetic, leaving 40 to 60 percent to be due to environmental issues. Taken together, this evidence suggests that there are multiple, perhaps many, causes or triggers of Alzheimer disease. It is still possible that one or several treatments might treat or prevent the disease no matter what the original trigger, but it is also possible that multiple treatments will need to be developed because the different causes need to be treated or prevented by different approaches or agents.”
I think it is important for Mom to have regular exercise and social activities. It would also be good for her to lose some weight. I wonder if the 12-hour fast would work for her – but maybe she is already doing that since she sleeps so late.
They say that, “It is now clear that women are at increased risk of developing Alzheimer disease. In the past it was thought that more women had Alzheimer disease because women live longer than men, but studies demonstrate that a greater percentage of women than men have Alzheimer disease at every age. The reason for this higher rate is not known.”
There are only 2 places in the book that talk about smoking:
Towards the beginning in making the home safe: “If the person smokes, the time will come when he lays down a lighted cigarette and forgets it….some people forget they ever smoked and thus do not complain when you take their cigarettes away.”
Towards the end under Research in Vascular Dementia and Stroke: “The risk factors for stroke include high blood pressure, high cholesterol and elevated low-density lipids, obesity, diabetes, diets high in animal fat and salt, smoking,and heart disease. These also increase a person’s vulnerability to vascular dementia. Direct treatment of these risk factors has been shown to lower risk of stroke. Physical exercise has also been shown to lower risk.”