Coping with Alzheimer’s Disease in a Loved One

Today someone develops Alzheimer’s Disease every 67 seconds in the United States. This number is accelerating because the aging population is living longer. It’s projected that by 2050 a new case of Alzheimer’s will develop every 33 seconds. It is more important than ever to get early screenings. Sometimes symptoms are written off to “They’re just getting old,” “There are no effective treatments so why get a diagnosis?” “Everyone their age has memory issues.” Early intervention can make a huge difference in quality of life, for the patient and their family.

Today one in nine people over 65 have Alzheimer’s. One third of seniors over 85 have Alzheimer’s. Don’t be afraid to bring up the conversation. It may change how the next phase of life goes.

This is a scary disease. Even many doctors are hesitant to tell patients that they have the disease. Caregivers report that forty-five percent of Alzheimer’s patients are not given their diagnosis from their physicians. Make sure a reliable car giver attends medical appointments, asks important questions and writes down the doctor’s answers.

Between 2000 and 2010 deaths from all other major diseases have decreased (deaths from heart disease have deceased by 16%, deaths from breast cancer, prostate cancer, stroke and HIV have all decreased) while deaths from Alzheimer’s has increased by 68%.

Very few cases of Alzheimer’s are familial, less than 3% of all cases. These genetic cases include mutations on chromosomes 1, 14 or 21. There is a test for this very rare form of the disease, which only affect s a few hundred families worldwide. The more common type generally starts later in life, progresses very slowly, and is caused by gene mutations that shrink the brain. This is caused by irregular amino acid metabolizing that builds up plaque and kills brain cells. This leads to memory and/or language loss. Whichever shows up first will usually be the worst symptom over the course of the illness.

Normal Aging

Some memory and cognitive functioning is normal s we age. The speed with which we process information slows a little. Working memory shrinks just a little (7 to 5%) and there are mild retrieval deficits, it takes more effort to remember things. Episodic memory, like what you had for dinner last night, may be less efficient, but it still works.

In normal aging verbal reasoning, attention skills, social life, recreation, the ability to recall how to do something and personality all are intact. If there are personality changes it is very likely some form of physical dementia is at play.

Symptoms

Symptoms of Alzheimer’s Disease include loss of short term memory, such as forgetting what one just said, leaving the water on, cooking on the stove, or what they did yesterday. Long term memory is often preserved, even though verbal and visual memory are both usually affected. Another symptom is the loss of the ability to copy simple drawings such as two connected diamonds or a circle and a square touching each other. Naming simple objects or fining words during conversations can become difficult. Words that are used less frequently are often lost first.

Symptoms may appear “patchy” and come and go, or show up at later times of the day when the patient is tired or it has been many hours since their medications. This “Swiss cheese” effect can be very frustrating for family members. They may interpret the fluctuations in symptoms as manipulation on the part of the loved one. Try to be patient and keep a record of these irregularities. Over time it may become apparent that there are some predictabilities in their forgetfulness.

Depression and anxiety often accompany the frustrating symptoms of Alzheimer’s. If psychotic symptoms appear they are often delusions filled with fear such as someone is stealing from them or their spouse is having an affair.

Preventative Measures

There is research that indicates that a healthy lifestyle may optimize aging and optimize functioning should there be dementia later in life. Health during midlife appears to be the most important. Weight control, healthy diet, physical and cognitive exercise, maintaining control of blood pressure, blood sugar, cholesterol, vitamin B12 and homocysteine levels and maintaining good immune functioning are some of the most important.

Genetics appear to not account for all of the predisposing factors. Social activity with face to face interaction engages 70 % of the brain, if you add in a lively conversation 100% of the brain is used. Four hours a day of social interaction appears to minimize the risk of developing Alzheimer’s Disease. Exercise, regular adequate sleep, good nutrition and challenging cognitive activity also give some protection.

A healthy diet consisting of mostly produce with unprocessed protein and low processed grain can help protect your brain. The fruits, vegetables, healthy oils, fish and whole grains of the Mediterranean diet is a good guideline.

As little as 30 min of physical activity five days a week reduces cerebral atrophy, stimulates neuron regrowth and synaptic plasticity (increases hippocampus volume) and reduces stress. Remember, everything that is good for the heart is good for the brain.

Sleep patterns change with age. Seniors may need less sleep and have more disrupted sleep. They may also suffer from REM disorders like restless legs or Apnea. Poor sleep leads to a diminished ability to concentrate and pay attention. Sleep disturbances can also interfere with encoding memories so they can be retrieved later.

Stress is another culprit that negatively affects cardiovascular health, immune system, gastral intestinal functioning, sex drive, sleep and mood. People who are under constant stress have higher death rates for their age group and display poor concentration. There are many ways to decrease stress including exercise, meditation, breathing techniques, spirituality, social support and guided imagery and mindfulness training.

Progression of the Disease

In mild neurocognitive impairment, no symptoms may be noticeable. The brain works hard to compensate for physical changes. Most patients have had Alzheimer Disease for at least ten years before they show symptoms because the brain has worked hard to make up for the diminishing capacity. While this may sound like a good thing, this compensation my hide symptoms. The earlier medication is introduced the more effective it is in delaying the onset of serious symptoms. Often patients know they have mental decline long before it would show on tests or long before their doctor knows.

In major neurocognitive disorder, the cognitive changes become a concern to the family. One or more areas of memory and mental functioning are significantly impaired. And eventually as dementia sets in the cognitive impairment is severe enough to interfere with everyday abilities.

Usually this progression is very slow, subtle and insidious. There doesn’t usually seem to be a defining event where the disease begins. Some exceptions are head injuries from falls or accidents, serious medical illness, surgery involving anesthesia and the death of a caregiver. It can take up to six weeks to get anesthesia out of the body after surgery. If there is a negative cognitive effect from pain meds or anesthesia, it may take time to see if a patient will return to the previous level of functioning.

Support for the Family

Having a loved one with Alzheimer’s takes a toll on a family. The disease slowly steals the person they knew and loved. Each day may be different. Issues of taking away driving privileges, medication schedules, medical decisions, financial responsibilities and obligations, removing power tools and fire arms, all may be overwhelming tasks for families. When out of home placement is necessary the guilt ambivalence and exhaustion can become unbearable.

If possible, divide up responsibilities. Collecting medical and psychiatric records and accompanying the patient to medical appointments can be rotated or delegated between several family members. Don’t be afraid to ask. Even if you get told “No, I can’t help” you’ll neve r know unless you ask.

Type up a comprehensive list of medications and supplements, the dosages, frequency taken and the prescribing physicians and phone numbers. Have this list available at all medical appointments. Also, type up a physical and psychological history including birth issues such as “blue baby,” NICU stays, head injuries, addictions, impulsivity, seizures, family history, work or military history, neurological issues and major illnesses and surgeries and any complications. Include hobbies, religious affiliations, past social life, marital history, job length and satisfaction sleep hygiene, exercise diet and appetite, weight gain or loss, and access to transportation, fire arms, and help with daily needs. Keep these lists current so any caregiver accompanying the patient will have the information to give medical personnel.

Support groups such as Care Givers of Dependent Adults or Alzheimer’s Disease support may offer valuable connection, suggestions and a safe outlet to talk about the challenges at home. Individual or family therapy may be helpful to cope with the feelings of loss, anger, frustration and guilt.

Ask your loved one’s medical doctors about medications that may be useful. Ask about side effects of medications and synergistic effects between drugs.

The more you trust yourself and have good coping skills for your own emotions, the better equipped you will be when it comes time to have difficult family meetings, chose financial plans, cope with the change of personality of your loved one and keep them safe. Therapy may help with identifying situations that trigger the Alzheimer’s patient and provide coping skills for the emotions that come with bathing, changing clothes, moves, change of caregivers or implementing interventions such as hospitalizations.

Coping with the aggression, depression, delusions, disinhibition, anxiety and agitation of a loved one suffering from this progressive disease takes a toll on everyone trying to help. Educate yourself about the disease and resources available. Run your expectations and fears by professionals and those in support groups. Simplify everything you can. Set up systems and calendar all appointments and ask for help before you need it. Set up predictable routines and don’t argue or try to convince the patient of the truth. Be good to yourself and make self care a top priority.

© Lois V Nightingale, PhD 2016

Alzheimer’s Association (2015) Alzheimer’s Disease Facts and Figures.

American Psychiatric Association (2013)