Living with Dementia: Caring for People with Alzheimer’s Disease

Dr. Richard Monroe M.D.
21 Min Read

Dementia is a devastating illness, which takes a profound psychological toll on both the patient and his or her family.  My training as a neurologist has brought me into the lives – the triumphs and the struggles – of more families dealing with this disease than I would like to recount.  I have learned a great deal about the pathophysiology of the different types of dementia, the medical side of this monster.  But nothing in all of my education or knowledge could prepare or equip me to handle the emotional side of what dementia takes away from people.

My wife’s grandfather suffers from advanced dementia, probable Alzheimer’s type.  He was once a vibrant, healthy, strong man who loved to work outdoors.  He actually built his own house and cabin on the lake, worked on his vehicles, and planted an orchard and a garden that spanned one acre on the lower lawn!  My wife tells me of better times, when the family would go to the cabin, or when they would all get together for Christmas, and her grandfather would be so happy and mischievous.

I wish that I could have met that man.  I wish I could have talked with him about all of his experiences, learning from his real-world wisdom and skills.  That is not the case, though.  Now he is confined to a hospital bed in the living room, requiring constant care by his wife and visiting nurses.  This once vibrant, independent man now sits or lies there most days, entertained by the television.  He usually sings or talks to himself – short phrases, or one or two words that sometimes trail off into gibberish.  He is fully reliant on others for all of his needs – feeding, clothing, bathing, toileting.  His wife, who suffered a stroke herself several years ago that affected her mobility, now must care for the both of them.

The stress it has placed on both their lives is indescribable.  He has mood swings, and erratic sleep patterns.  She is lucky if she gets five or six hours of sleep a night.  He is more prone to infections, which, in his state, can hit him hard and worsen his fragile neurologic state.  I see in my wife’s eyes the hurt and sadness, looking at the dramatic transformation from what her grandfather was to the condition he is in now.

Dementia is a condition of pathologic neuronal cell death, which leads to memory decline, as well as behavioral changes.  There are several types of dementia, with the most common being Alzheimer’s.  This condition was described at the turn of the last century of the neuropathologist for which the disease was named, in a nun with precipitous memory and cognitive decline.  Dr. Alzheimer showed on pathologic sections of the patient’s brain that the overall volume had declined, and staining of microscopic sections revealed abnormal protein aggregates, known as plaques and tangles.  It is a disease of the elderly, classically manifesting symptoms after age 65.  However, there are several known genetic mutations and conditions which predispose individuals to the disease at a younger age.  The cardinal feature of early Alzheimer’s disease is memory difficulties, out of proportion to other neurologic findings, such as weakness, or abnormal movements.

A very good resource for patients with early memory difficulties, as well as loved ones, is the Alzheimer’s Association website.  It contains a great deal of useful information regarding the disease itself, as well as resources and links for caregiver support.  It also contains more in-depth examples and descriptions of disease stages and symptoms than what I am able to present below.  The following discussion is an overview of the stages and initial symptoms of Alzheimer-type dementia (I state it this way because, currently, the only way to have clinically proven Alzheimer’s disease is through confirmed pathology, which requires microscopic brain tissue sectioning.  This is usually only performed at autopsy.)  I highly encourage you, if you are interested in the disease or diagnosis, to consult with your medical care provider, as well as obtain more information from reputable sources.

There are seven recognized stages of progression in Alzheimer’s dementia.  Stages 1 and 2 are also seen in normal individuals as they age, and are not specific for pathology.  Stage 1 is normal function, or no impairment.  In Stage 2, people suffer from very mild memory lapses, such as forgetting words or misplacing objects, and may recognize these errors.  However, no abnormalities are described by friends or family, and formal evaluation does not elicit any deficits.

Everyone wonders from time to time whether his or her, or a loved one’s, forgetfulness is normal or a sign of something more ominous.  The overarching difference between normal aging and “senior moments,” and dementia is whether the symptoms or difficulties impinge on daily activities and quality of life.  That being said, there are several red flags that should prompt further questions, and perhaps a conversation with a physician, if noticed in yourself or a loved one.  The first are memory changes that disrupt the daily routine, which point to difficulty recalling and retrieving recently learned information.  Symptoms of concern include forgetting important dates or asking the same question repeatedly.  Another manifestation is difficulty with orientation – people suffering from early dementia lose track of time, and may not remember how they got somewhere, or where exactly they are.  This leads to confusion, and patients can become easily lost, even in familiar locations.  People with early dementia also misplace objects in unusual locations (i.e., putting their keys in the fridge), and not being able to retrace their steps to find the object.  Now, everyone forgets names or appointments, or misplaces objects from time to time, however; normally, we end up recalling the information, or remembering where we left the item, a little later (which has happened to me on numerous occasions, much to the chagrin of my wife!).

Another realm of cognition that is affected early by Alzheimer’s dementia is problem-solving, planning and mood, which all localize in the brain to the frontal lobes.  For example, a person who could normally cook from a recipe or handle their own finances has difficulty concentrating or completing the task.  This does not include the occasional math error, though, which we all do from time to time.  Early dementia also leads to impairments in decision-making, making people more impulsive than usual.  They may also pay less attention to personal hygiene and grooming.  In addition to attention, however, hygiene may be due to worsening depression or apathy, a result of the disease affecting personality and mood.  People can also become suspicious (sometimes to the point of paranoia, but not classically early in the disease), fearful and anxious.  They have difficulty controlling their emotions, becoming upset more easily and having outbursts of anger or crying.  These emotional disturbances, combined with difficulty dealing with new or unique situations, and trouble with memory and concentration, can all cause people with early dementia to give up social situations they used to enjoy, such as work or hobbies with friends.

Stage 3, also known as mild cognitive decline or impairment (MCI), is the initial phase of early-stage Alzheimer’s in most individuals.  However, even then, not all patients who present with MCI will progress to full-blown Alzheimer’s.  It is a risk factor, though, with 15% of MCI patients per year going on to developing Alzheimer’s dementia.  In this stage, loved ones start to notice difficulties in memory retrieval and recall.  Patients also demonstrate difficulties planning and organizing activities or tasks that they were capable of performing before, such as shopping for groceries or managing their checkbooks.  Detailed medical interviews, using screening tests such as the Mini-Mental Status Exam (MMSE) or Montreal Cognitive Assessment tool (MoCA), usually demonstrates deficiencies.

Stage 4 is known as mild Alzheimer’s disease, and includes forgetting recent events, as well as some personality changes, classically becoming more depressed and withdrawn.  Medical interviews will detect deficiencies in concentration, attention, and memory.  Stage 5, or moderate Alzheimer, shows evidence of memory deficits and cognitive functions readily in everyday life.  Patients need help at this stage with activities of daily living (ADLs).  More glaring omissions are present in recalling personal history, as well as difficulty with important contact information, such as their address and telephone number.  They may need help choosing clothes appropriate for the weather (since they have difficulty with the passage of time), but they do not need help feeding themselves or using the bathroom.  Remote personal memory, such as important Christmas parties, close family members, and signature details of their lives, are also still intact at this stage of the illness.

The final two stages of Alzheimer disease (6 & 7) see a more precipitous decline in memory, attention, and function, especially after the individual becomes less mobile or bed-bound.  In Stage 6, there is severe decline, dominated by personality changes.  This is perhaps one of the most difficult aspects of this illness, both for the family to experience, and for the physician to treat.  The patient becomes much more suspicious and delusional, in conjunction with losing the ability to recognize their loved ones and caregivers and severe memory disturbances.  It is a cruel irony, then, that this is the stage where an individual becomes much more reliant on family members and caregivers for assistance with ADLs, such as using the bathroom (there is difficulty controlling bladder and bowel function, with frequent incontinence) and remembering to eat.  If still ambulatory, he or she becomes easily lost.  There are also significant aberrations in the sleep-wake cycle, so an individual will wake up during the night, become even more confused and disoriented, and wander off.

Late-stage Alzheimer’s finds the patient totally bedbound and reliant on others for help with every aspect of care.  They have lost the ability to respond meaningfully to their environment.  In addition, they have “forgotten” how to control their limbs, and even use their tongue to initiate and facilitate swallowing.  Muscles and limbs grow rigid and atrophic from disuse.  Patients must be constantly repositioned and turned every couple of hours to avoid bed sores, which can become infected, especially those on the buttocks or hips.  Aspiration of foods and liquids during feedings is a major concern, since it can lead to pneumonia.  The average duration from diagnosis of early Alzheimer’s to end-stage disease is about seven to ten years.

Unfortunately, there is no definitive laboratory test or imaging study that conclusively diagnosis Alzheimer’s disease.  Diagnosis is made through taking a thorough history, as well as complete neurologic and cognitive exam and assessment.  Another very important part of the evaluation is the history and observations obtained from family members.  Blood work and imaging studies are crucial steps in the initial evaluation, because they can help identify potentially reversible causes of memory loss and dementia.  While they are not common, these causes, since they are reversible, need to be identified, or excluded.  Reversible causes include hypothyroidism, vitamin B12 and folate deficiency, chronic subdural hematoma, and drug reactions, especially sedatives and narcotics.

Currently, there is no cure for Alzheimer’s dementia.  Treatment consists of symptom management, and includes both behavioral therapies and medications.  Learning the utility and rationale behind these treatments can help alleviate some of the stress and confusion, for both the patient as well as the caregiver.

Behavioral management helps to provide a non-threatening environment that makes the patient feel comfortable.  It should also help to reduce episodes of agitation and confusion.  It involves creating a calm atmosphere.  Caregivers should try to use short, positive statements, not raising their voice, or taking offense at outbursts.  The environment should also avoid too much loud sounds, lights, or background “noise” – distractions that can further confuse or aggravate the patient.  Patient comfort should also be monitored closely.  In addition to avoiding bed sores and uncomfortable positions, patients should also be monitored to make sure that they are not suffering from constipation or urinary retention, which can be very painful if left untreated, and are easily overlooked.

The mainstay of Alzheimer medications is cholinesterase inhibitors.  The rationale behind these treatments is the finding that the cells that produce acetylcholine, an important neurotransmitter in the brain involved in, among other functions, memory and thought, are damaged in Alzheimer’s dementia.  Cholinesterase inhibitors work by slowing the breakdown of acetylcholine by particular enzymatic processes.  This allows the neurotransmitter, which has reduced levels in the Alzheimer’s brain, to stay around longer and facilitates its signaling function.  The hope is that the delayed breakdown will help augment signaling, and ultimately memory and thought.  These medications are usually well-tolerated, especially when started at a low dose and titrated slowly.  The major side effects involve the gastrointestinal tract (which also uses acetylcholine for signaling), resulting in nausea, vomiting, loss of appetite, and diarrhea.
A newer medication on the market is memantine.  It is another class of Alzheimer medicine that affects brain neurotransmitters, and works to modulate glutamate activity in the brain.  A lot of research has shown that glutamate is involved in memory formation and retrieval.  Too much glutamate produces conditions that are toxic to the neurons, however, and memantine is thought to work by protecting cells from glutamate neurotoxicity.  Both of these medication classes – memantine and cholinesterase inhibitors – need to be prescribed and monitor by a licensed medical professional.  Please seek their input, and medical evaluation, if there are any problems or concerns about starting or continuing any of these medicines.

Several other classes of drugs are used for additional symptom management.  These include antidepressants for mood and irritability, as well as antipsychotics for hallucinations and agitation.  It is important to note that these medicines do not work on the underlying pathology of Alzheimer’s, as the former compounds.  Rather, they are specifically tailored to address the symptoms noted.  As with all medicines, these therapies should be started at \the lowest possible dose, and only one at a time to avoid harmful side effects.  Elderly patients have slower metabolism of chemicals in general, and are more sensitive to medicines, particularly ones that affect cognition.  As the old mantra in medicine goes, “start low, and go slow.”

One medication that should be avoided by elderly individuals, especially those suffering from dementia, is diphenhydramine, the active ingredient in main over-the-counter antihistamine agents, as well as several popular sleep medicines.  While usually safe and effective in a majority of the population, there is an increased tendency for insomnia, agitation, and confusion in older patients.  These side effects of diphenhydramine occur because it crosses into the brain and affects acetylcholine neurotransmitter activity, which, as you recall from earlier, is already aberrant in Alzheimer’s disease.

Finally, one topic that is particularly important to me, and one that is overlooked, is caregiver health and stress management.  Spouses and family members who help support and care for their afflicted loved one make untold and incalculable sacrifices –time, sleep, careers, friends, hobbies –  all for love.  But as giving and selfless as these people are, it must be remembered that everyone is human, and everyone can become burnt out also.  The stress and sadness of a chronic progressive disease take their toll on our patience, our moods, our mental and physical reserves.  Grieving is an important part throughout the whole process; guilt feels like an unwanted cloud hovering over every thought.  It is natural to grieve since Alzheimer’s slowly takes away the person you love.  That is perhaps the worst, most cruel, most monstrous part of the disease.  Guilt can arise as the feeling of stress and difficulties coping with the memory loss or agitation, the mood swings, \the sleep disturbances, and eventual dependence.  It might be cliché, but it is important to say: “It’s not your fault.”  Everyone feels these feelings, especially with the depression, the stress, the insomnia.  It is important to seek out support and resources (family, friends, and community) in order to manage the situation and handle the stress.  It is also vital to learn about dementia, as well as caregiving techniques.  Hopefully, that is what you have been doing throughout this article.  Other resources are available online, as well as through your health provider.

Preventive Medicine: What You Need to Know

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