By Susan J. Harper, LSW, ACSW

	Introduction
	The Phase Model
	The Staging Model
	The Seven Stage Model
	The ABC’s of Alzheimer’s Disease

 

Introduction

There are more than 70 known disorders that can result in dementia, including Pick’s Disease, Multi-Infarct Dementia, and Parkinson’s disease, although Alzheimer’s is the best known. It is estimated that one third of all families are impacted by having a loved one diagnosed with Dementia. Although it may be true that the majority of these individuals will be admitted to a nursing home, it is not true that this is the only answer. In fact, even if placement in some kind of assisted living is the choice of the individual and the family at some point, because of the slow progress of the disease, the individual with Dementia may not be appropriate for nursing home care for several years.

In 2003 the worldwide cost of Alzheimer’s disease (AD) was estimated to be $156 billion, with estimates that 27.7 million people suffered from this condition. By 2040, predictions are that 14 million Americans will be diagnosed as having AD.

Currently, five of every one hundred people age 65 are affected with AD. This number rises to twenty of every one hundred at age 85. It is estimated that by the year 2030 about 51 million individuals will be 65 and older – the most vulnerable age for the onset of AD. Also, almost all persons with Down’s syndrome who live to the age of 45 will develop AD.

The average lifespan after diagnosis is 8 years, but can be as few as 3 or as many as 20 years.

Studies reveal that 80% of caregivers are female – 31% are spouses and 59% are adult children. Full time employment is an issue for 40% of caregivers. Spouses need to be concerned with their own health conditions in addition to the burden of caregiving; adult children need to deal with being part of the “Sandwich generation,” having responsibility for their own families as well. Another factor in home-based care is the universal tendency toward shorter hospital stays, resulting in more intense medical tasks to master as a caregiver. Although the general information in this presentation is accurate, it is important to remember that each person with AD will be affected differently.

Models for Understanding Alzheimer’s Disease

The Phase Model

• Phase I: Indicators are forgetfulness – where items are placed, appointments, names, and associated anxiety about forgetting.
• Phase II: Indicators are confusion and intellectual impairment, problems with recent memory, concentration, and orientation; ‘covering’ becomes more difficult.
• Phase III: Delusions, agitation, loss of basic abilities, and incontinence increase.

The Staging Model

Early Stage, also called Moderate – average length of this stage – 2 to 4 years

• Inability to retain information recently taught, such as programming a VCR or clock radio; adjusting to a new phone system; remember how to buzz someone into the building if recently relocated to a secured apartment building. There will be some ‘clear’ moments when the individual seems to be perfectly normal.
• Losing things or placing them in unusual places – resulting in lost eye glasses, hearing aids, and dentures, often wrapping them up in a napkin and throwing them away. Never empty a wastebasket without checking!
• Getting lost when away from home, resulting in an increased need for supervision.
• Loss of interest in previously enjoyed activities, which may be related to forgetting how to perform the task, resulting in a need to adapt previously enjoyed abilities to the level of ability that the patient is now capable of.
• Language and perception deteriorate. There is difficulty finding the right word or name, difficulty interpreting events properly. The person now sees everything through the ‘lens of the past,’ instead of being able to see the event as a new and different event. The result is that the patient may resort to shouting, withdrawing, telling others that they are lying.
• Abstract thinking becomes more difficult. Things such as numbers lose their meaning. Connecting thoughts also deteriorates, resulting in poor decision making, including difficulty handling money, paying bills.
• The patient becomes more in tune with the emotions of others, even while forgetting life patterns and roles; often resulting in becoming upset if the caregiver is upset and remaining calm if the caregiver remains calm.
• Characteristics that may have been buried can become dominant. A formerly mild mannered person might begin to swear or become verbally abusive, or become impulsive. It is as if the ‘social graces’ disappear, with whatever comes to mind being acted upon.
• There is loss of the sense of time. There is no past or future; there is only right now.
• The person is more dependent on the environment and on others for cues about how to act. This can result in forgetting to go to the bathroom unless visually or verbally reminded.
• The individual is aware that something is wrong, but generally keeps this to himself (covering), resulting in limited choices. They usually see this as a personal failing, not part of the disease. Even when diagnosed, they may deny that this is true, especially in public.
• Previously understood tasks become more difficult to perform.

It is vital to understand that these are not choices but instead are a result of the disease. Efforts should be concentrated on providing a safe environment and emotional support while guiding the person to complete the tasks that are becoming more difficult. Praise for efforts needs to be a regular event on an ongoing basis.

Mid Stage – average length of this stage – 2 to 10 years

• There is a progression from forgetfulness to confusion.
• Efforts to ‘keep up appearances’ are slowly abandoned. The care receiver perceives himself as competent, and the world as ‘crazy.’
• Attention span grows shorter.
• Emotions are unpredictable, and patient is less inhibited. Due to the frustration of living in a ‘crazy’ unpredictable universe, aggressive outbursts can occur as the person becomes frustrated.
• There are increases in restlessness and wandering, with the appearance of looking for something, and being unable to state what it is that they are searching for. Often this behavior is more pronounced in the late afternoon and evening (Sundowning). The person may believe that it is time to go to work, pick up the children from school, or another task that previously gave meaning to their lives. Also, they may state that they have to go see their parents. This is interpreted as a desire to return to a time when ‘mom’ was able to making everything OK again; searching for a time and place where things made sense.
• Refusal to do activities that were previously pleasurable. This is often a result of inability to recall how to perform the task.
• Loss of impulse control, resulting in inappropriate activities in public.
• Repetition of words, statements or actions, getting stuck in an activity and being unable to recall the next step. Also, receiving comfort by repeating what they recall – a ‘sing-song’ type of experience.
• Difficulty with motor control, resulting in bumping into furniture, doorways. Decreased perceptual ability is also a factor, with a ‘tunnel vision’ of sorts.
• Delusions – seeing or hearing things that are not there. This is a major safety issues and a needs to be discussed with the Primary Care Physician (PCP).
• Decreased need for sleep, often less sleep than the caregiver requires.
• Clinging to the caregiver, finding this to be an island of sanity in an insane world.
• Darkness, shadows, certain smells, high room temperature, noisy confusing sounds, boredom and over stimulation can lead to increased confusion, resulting in aggressive behavior. Similarly, adequate lighting, soothing smells, appropriate room temperature and the avoidance of excessive noise can result in a calmer individual.

Late stage, also called Severe – average length of this stage – 1 to 3 years

• Inability to carry on a conversation, but can sing or say prayers from memory.
• Rocking, undressing, pacing and repetitive motions increase.
• Not making eye contact.
• The person does not recognize their reflection in a mirror; also not recognizing close relatives or friends – see others as ‘nice strangers.’ This is especially difficult for very close relatives to understand as they witness the disappearance of the person they knew and loved, and yet that person is still in front of them.
• Increased likelihood of falling due to balance problems and detachment from reality.
• Incontinence.
• Difficulty swallowing when eating, and choking.
• May have seizures, infections.

The Seven Stage Model

This model presents an overall look at cognitive decline, and a way of placing all individuals somewhere on this continuum.

• Stage 1: No cognitive impairment.
• Stage 2: Very mild cognitive impairment. Individuals are aware that they are having memory lapses, such as misplacing keys, forgetting familiar words. There are no deficits obvious to friends, family or co-workers.
• Stage 3: Mild cognitive decline. Others begin to notice deficiencies, clinically measurable loss of retention of reading material.
• Stage 4: Moderate cognitive decline – Mild or Early stage AD. Clear-cut deficiencies, such as knowledge of recent events, impaired math ability, difficulty with complex tasks, forgetting one’s own history, withdrawal from challenging situations.
• Stage 5: Moderately severe cognitive decline – Moderate or mid stage AD. Major gaps in memory and deficits in cognition, difficulty with day-to-day functioning.
• Stage 6: Severe cognitive decline – Moderately severe or mid stage AD. Memory continues to worsen, personality changes may emerge, the need for assistance with Activities of Daily Living (ADLs), disruption of sleep cycle, incontinence, significant personality changes, wandering.
• Stage 7: Very severe cognitive decline – Severe or late-stage AD. Loss of ability to respond to environment, speak, and ultimately to control movement.

The ABC’s of Alzheimer’s

This model is more concrete, and does not indicate any time line, but generalizes on the kinds of changes observable in those diagnosed with AD.

Activities of Daily Living

• Spending less time on hobbies, such as reading or gardening. Previously enjoyed leisure activities disappear.
• Having difficulty doing household chores such as setting the table, doing laundry, using appliances.
• Having trouble traveling alone. Forgetting to pay the fare in a taxi, or being unable to tell the driver the address where they are going. Loss of ability to turn around and find the way back.
• Needing assistance with ADL tasks such as dressing, eating and grooming.

Behavior

• Being withdrawn or overly quiet.
• Acting suspicious, having delusions, experiencing hallucinations.
• Feeling sad, confused, depressed, irritable, anxious, or aggressive (mood changes).
• Acting restless, wandering, experiencing sleep disturbances.

Cognition.

• Forgetting familiar words, people, and places.
• Finding it hard to follow directions or do calculations.
• Forgetting the day, year, season, where they are, and what things are going on around them.

Having some idea of what to expect is a vital aspect of care. There are measuring tools that can assist with determining the progression of the disease, and thus assist with planning. Some of these are the Clinical Dementia Rating (CDR), the Brief Cognitive Rating Scale (BCRS) and the Global Deterioration Scale (GDS). A good general tool is the Mini-Mental State Examination (MMSE), a structured set of questions that are easily administered. Early stage disease score is generally 20 or more points; middle stage disease patients score between 10 and 19 points; and those with late stage disease score 9 points or lower. Repeated administration of the MMSE will allow caregivers to chart the progress of the disease and adjust caregiving strategy accordingly. However, it is important to remember that no two people progress at the same rate. The caregiver can discuss measuring tools with the health care professionals involved with care.

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