The Stages of Alzheimer's and the Caregiver's Role

Carol Bradley Bursack | Aug 18th 2017

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While Alzheimer’s disease will progress differently for each person, scientists and clinicians have attempted to stage the disease as a way that helps people living with Alzheimer’s and their families understand what is happening, as well as to plan for the future. Some divide AD into seven stages, some five stages, but currently three stages is the format most often used. The Alzheimer’s Association uses three stages, so that is what we will use for our foundation here.

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Mild Alzheimer's disease (early stage AD)

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The Alzheimer’s Association uses the following criteria to illustrate issues in mild or early stage Alzheimer’s disease: Problems coming up with the right word or name, trouble remembering names when introduced to new people, challenges performing tasks in social or work settings, forgetting material that one has just read, losing or misplacing a valuable object, and increasing trouble with planning or organizing.

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Some of these can be signs of normal aging

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Most aging people have some of these issues. It’s a matter of degree. A diagnosis is required to determine if AD or another type of dementia is present. Also, people can display symptoms that appear to be dementia of some type, but may be caused by something else, such as medications, infections, thyroid problems, hydrocephalous, depression, vitamin deficiency and others. Most of these dementia symptoms are reversible, so again, when there is any reason to be concerned, see a physician.

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The first stage of AD is the time for acceptance and planning

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People who live with Alzheimer’s disease can often live through most aspects of the first stage with a good to fair quality of life. Yes, there is an increasing need for assistance from spouse or family, but when the caregivers and partners concentrate on what the person living with dementia can do rather than what they can’t do, there’s room for joy even while accepting the increasing limitations caused by the disease. This is also the time for planning for the progression of the disease.

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Caregiver may have to take the lead

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This is the ideal time for planning. Legal paperwork, such as Powers of Attorney for health and finances, needs to be updated. Wills should be re-examined and changed where necessary. This is the time for the person living with Alzheimer’s and the caregiver/care partner to see an elder law or estate attorney to make certain that all bases are covered so roadblocks don’t occur after the disease is at a stage where the person with the disease can no longer make legal decisions.

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Moderate Alzheimer's disease (middle-stage AD)

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The Alzheimer’s Association maps the symptoms on this slide and the next as middle stage AD: Forgetfulness of events or about one’s own personal history, feeling moody or withdrawn (especially in socially or mentally challenging situations), being unable to recall their own address or telephone number or the high school or college from which they graduated, confusion about where they are or what day it is…

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Moderate Alzheimer's disease (middle-stage AD), continued

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(Continuation from slide 5)…the need for help choosing proper clothing for the season or the occasion, trouble controlling bladder and bowels in some individuals, changes in sleep patterns (such as sleeping during the day and becoming restless at night), an increased risk of wandering and becoming lost, personality and behavioral changes (including suspiciousness and delusions), or compulsive and repetitive behavior like hand-wringing or tissue shredding.

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Caregiver will need education about the disease and how to provide help

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By the time a loved one’s Alzheimer’s has progressed to middle stage, the caregiver must look for education, advice, and support. Begin with the Alzheimer’s Association site. The National Institutes of Health (NIH) also offers excellent information as does the National Dementia and Resource Center (NADRC). Social media has many groups started by caregivers who have been in your shoes. Search Facebook and Twitter for caregiving advice. Search for an online group that makes you feel comfortable.

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Caregiver will need further support in person and online

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Caregivers need to know that they aren’t alone. Call your local Alzheimer’s organization and inquire about in-person meetings. Look online, as well, for caregiving groups. If you aren’t comfortable with one, go to another. Facebook has some excellent caregiving groups. USAgainstAlzheimers is one such group (full disclosure: I am a moderator), though there are many for you to choose from. As with in-person groups, beware of possible abuse. If you feel abused, leave the group.

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Late stage Alzheimer’s disease is the precursor to death

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According to the Alzheimer’s Association, at this stage individuals may need round-the-clock assistance with daily activities and personal care, lose awareness of recent experiences as well as of their surroundings, experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow, have increasing difficulty communicating, and become vulnerable to infections, especially pneumonia.

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Late-stage caregivers need respite care and assistance

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The last stages of the disease can be very hard on the caregiver. Not only does the caregiver have to watch a loved one’s health decline, but the caregiving responsibilities have increased to a point where the person with the disease must be watched around the clock. The caregiver needs respite care if only to have an opportunity to sleep. This is when people living with AD can become unable to communicate their needs, which makes doing the right thing even more challenging for the caregiver.

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Grieving is a process but bright spots do exist

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Grieving is a natural reaction for anyone who has received a terminal diagnosis, which Alzheimer’s is. However, there is time for a lot of living even after both care partners are aware of the prognosis of the disease. People vary widely in how fast the stages move forward and many people enjoy life until very close to the end. There’s nothing pretty about an AD diagnosis, but there is life to live afterward. Take advantage of a renewed outlook on the preciousness of life.