Nearly everyone who cares for someone with dementia has a story like this:
“Just yesterday, mom spent most of the day sitting quietly and barely said a word. When I brought her lunch, she looked at me like I was a stranger. This morning, she greeted me cheerfully and called me by name. A few minutes later she was working on a crossword puzzle. Could it be that she’s getting better?”
Dementia – once it has been officially diagnosed – does not go away, but the symptoms can come and go and the condition can manifest itself differently depending on the person. The symptoms and signs of Alzheimer’s or dementia progress at different rates. There are different stages, but it doesn’t ever “go away”.
Dementia progresses rapidly for some people, while it takes years to reach an advanced stage for others. People with “mild dementia” may still be able to function independently, with memory lapses that have a minimal impact on daily life, such as forgetting words or where things are located.
While Alzheimer’s and other common forms of dementia are progressive in nature and cannot be reversed (not yet, anyway), sometimes symptoms fade and individuals can enjoy periods of relative stability. This happens for a number of reasons.
How Dementia Seems to Come and Go
In one study, charts of dementia patients were reviewed during a two-year period. The researcher scanned the charts for mentions of “good days and bad days.” The most common characteristics? Most of the patients lived with their caregivers (typically their spouse). Most were recently diagnosed with mild dementia. About half were taking cholinesterase inhibitors, a category of drugs used to treat Alzheimer’s. Good days most often involved enhanced mood, better concentration and improved ability to perform IADLs (instrumental activities of daily living). Bad days were characterized by increased verbal repetition, anger, irritability, forgetfulness, delusions and declining mood.
Why Dementia Symptoms Fluctuate
The common perception that symptoms come and go is an important area worthy of additional study. From what we know now, here are five considerations when thinking about why your loved one might experience increasing and decreasing signs of dementia.
- Your loved one is in the early stages of dementia. The onset of dementia is confusing and frightening for patients and family alike. In early-stage dementia, memory problems and confusion come and go and may be accompanied by periods of completely normal behavior. As one writer puts it, “One day the person may be calm, affectionate and functioning well, the next, forgetful, agitated, vague and withdrawn.”
- Co-existing medical conditions. It’s very common for those who suffer from dementia to have other diseases that may worsen symptoms. For example, when an Alzheimer’s patient is also depressed, it may be that a deepening depression is to blame for emotional problems. Sometimes, treating the other condition will appear to “improve” Alzheimer’s. This is why it’s important for loved ones as well as the medical support team to not make any assumptions as to why the patient seems better or worse.
- Maybe it’s not Alzheimer’s. There usually aren’t major changes in cognitive function from day to day for Alzheimer’s patients. On the other hand, it’s common with another form of dementia called Lewy body dementia. This under-recognized and under-diagnosed dementia can result in an apparent improvement in symptoms.
- Treatment with dementia medications. Some patients respond favorably to dementia medicines. While the disease can’t be halted, certain medications can help sharpen the mind for a time, especially in the early stages of the disease. The top five drugs for combatting dementia symptoms are Aricept (donepezil), Razadyne (galantamine), Exelon (rivastigmine), Namenda (memantine) and Namazric (donepezil and memantine).
- Treatment with other kinds of prescriptions. While non-drug options like counseling and support groups are the first line of defense, sometimes medications such as antidepressants, anticonvulsants, antipsychotics, anti-anxiety drugs andsleep aids can help correct emotional and behavioral issues. One elderly woman I knew went from mild cognitive problems to rapidly advancing symptoms in a single weekend, including wandering and hallucinations. Her doctor prescribed an antipsychotic medication that returned her to her previous state in short order. She lived contently for nearly a year before the symptoms advanced.
In short, there is no playbook for what is and isn’t normal in dementia. In some forms of dementia, symptoms may appear suddenly or may come and go. People with dementia can often be very lucid, engage in perfectly normal conversations and seem to not have a problem with memory recall. The next day they are hallucinating and don’t know where they are; they are walking around the house with the dog leash and think the dog is attached but the dog is outside. And then the next day they are doing the crossword puzzle peacefully. This can be challenging, if not maddening, for caregivers but should be understood, expected and met with compassion.
What We Know About Dementia
The National Institute on Aging (NIA) says that dementia affects approximately 3.4 million Americans, or 13.9 percent, of the U.S. population ages 71 and older and is usually caused by brain damage associated with Alzheimer’s disease, vascular dementia or Parkinson’s disease. And in Canada, the number of people living with dementia is expected to rise 66% by the time we reach 2031.
It is important to differentiate the various types of dementia; for about 70% of patients, a diagnosis of dementia will be accompanied by a diagnosis of Alzheimer’s disease. Although these terms are often used interchangeably, Alzheimer’s and dementia are not one in the same. Dementia is a loss of brain function that refers to a group of illnesses.
Although dementia may be a symptom of Alzheimer’s, it may have other underlying causes, such as Pick’s disease, hypothyroidism or head trauma. While Alzheimer’s is the leading cause of dementia, vascular dementia, which is often caused by stroke, accounts for about 17% of all dementia cases.
While people will experience dementia differently, most people with dementia share some of the same symptoms that may come and go.
Signs of Dementia
Symptoms may include the following in varying degrees based on how far the disease has progressed:
- Memory loss of recent events
- Getting lost in familiar places or misplacing objects
- Difficulty with problem-solving and complex tasks, such as managing finances
- Trouble organizing or expressing thoughts
- Asking the same questions repeatedly
- Being unable to follow directions
- Becoming disoriented with time, people, or places
- Neglecting personal safety, hygiene, or nutrition
- Difficulty recalling appointments they’ve made
- Trouble finding the right words to express themselves and organizing thoughts
- Remembering simple steps in everyday activities (such as turning the stove off after cooking)
- Impaired judgement – ranging from dressing inappropriately to walking in the middle of the street
- Mood swings, personality changes, or loss of initiative
These wide-ranging symptoms are all memory related since dementia is a degenerative disease that causes a progressive decline in cognitive function including memory, attention span, and problem-solving skills.
Not all confusion and memory loss indicate dementia; however, so it’s important to rule out other conditions. Some signs of dementia may be caused by physical problems versus mental. Urinary tract infections (UTI’s), nutritional deficiencies (vitamin D and/or B-12), dehydration, possible side effects from medication, excessive alcohol consumption, insomnia, changes to routine, or even dental problems can have an effect on cognitive ability. Be aware that if these health issues arise for a person already diagnosed with dementia, it can aggravate the condition.
Dementia should also not be confused with common symptoms of aging like misplacing the car keys or forgetting what you were going to say.
Again, a healthcare professional should be consulted if these symptoms persist or get worse. According to the Family Caregiver Alliance (FCA), a diagnosis of dementia requires a complete medical and neuropsychological evaluation. The full exam allows the doctor to determine whether the patient has dementia and, if so, its severity and causes. From there, the physician can make treatment recommendations and assist the patient and caregivers in planning for the future.
Tips for Dementia Care
Dementia can be challenging for both patients and caregivers but knowing what to expect can help ease the journey. Caregivers may not be able to anticipate the level of dementia on a daily basis, but they can be prepared to manage the varying symptoms of dementia as they progress.
The different stages of dementia require different degrees of caregiving. 2 With mild dementia, people may still be able to function independently, however, they’ll experience memory lapses that affect daily life, such as forgetting words or where things are located.
People experiencing moderate dementia will likely need more assistance in their daily lives as it becomes harder for them to perform daily activities and self-care. They may hallucinate, get lost easily and forget where they are, and not remember what day of the week it is.
Someone with severe dementia will likely lose their ability to communicate and need full-time daily assistance with tasks such as eating and dressing. They may not remember their own name or the names of others. Physical activity and ability may be seriously impaired (walking, eating, bladder control) and they may be more susceptible to infections, such as pneumonia.
Regardless of the stage of dementia or how challenging it may be as the symptoms come and go, a person with dementia should be respected and treated as normally as possible while ensuring their health, safety and well-being. The more a caregiver can understand what to expect when a loved one has dementia and to accept the often-wavering levels of behavioral change, the more effective and loving they can be during difficult times. And finally, as challenging as it may be, try to maintain a sense of humor about the sillier, harmless things that can happen – like putting the milk in the microwave instead of the refrigerator – and not get upset. When it comes to a loved one suffering from dementia, they truly do not understand the error in what they do much of the time. Be kind and gentle.