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Persevering Through Mid-Stage Alzheimer’s Disease
By Kristine Dwyer, Staff Writer

 

Caring for a person with Alzheimer's disease (AD) is a difficult task as each day brings unique challenges and the caregiver copes with changing levels of ability and new patterns of behavior. In recent years, attempts have been made to categorize the stages of Alzheimer’s in order to gauge the progression of the disease. Staging systems can provide useful frames of reference for understanding how the disease may develop and can assist physicians in treating patients. Awareness of these stages can also help caregivers to prepare for their loved one’s needs, as well as determine their own capacity for coping and planning ahead.

In general, Alzheimer’s symptoms can be classified as mild, moderate or severe. Physicians may also use the terms early, mid and late-stage Alzheimer’s.  According to the Alzheimer’s Association, experts have documented seven common patterns of symptom progression that occur in many individuals and developed several methods of “staging” based on these patterns. It is important to note that not everyone will experience the exact same symptoms or progress at the same rate. In addition, people with Alzheimer’s live an average of eight years after diagnosis, but the duration of the disease can vary from three to twenty years.

To more fully understand the mid-stage of AD, one must understand the early and late stages, as well. This expanded framework from the Alzheimer’s Association outlines key symptoms that describe the general stages of AD progression:

Stage 1: No impairment
(normal function)

Unimpaired individuals experience no memory problems and none are evident to a health care professional during a medical interview.

Stage 2: Very mild cognitive decline
(may be normal age-related changes or earliest signs of Alzheimer's disease)

Individuals may feel they have memory lapses, especially in forgetting familiar words or names or the location of keys, eyeglasses or other everyday objects. But these problems are not evident during a medical examination or apparent to friends, family or co-workers.

Stage 3: Mild cognitive decline
Friends, family or co-workers begin to notice deficiencies. Problems with memory or concentration may be measurable in clinical testing or during a detailed medical interview. Common difficulties include:

  • Word- or name-finding problems noticeable to family or close associates
  • Decreased ability to remember names when introduced to new people
  • Performance issues in social or work settings noticeable to family, friends or co-workers
  • Reading a passage and retaining little material
  • Losing or misplacing a valuable object
  • Decline in ability to plan or organize

Stage 4: Moderate cognitive decline
(Mild or early-stage Alzheimer's disease) 
At this stage, a careful medical interview detects clear-cut deficiencies in the following areas:

  • Decreased knowledge of recent occasions or current events
  • Impaired ability to perform challenging mental arithmetic; for example, to count backward from 75 by 7s
  • Decreased capacity to perform complex tasks, such as planning dinner for guests, paying bills and managing finances
  • Reduced memory of personal history
  • The affected individual may seem subdued and withdrawn, especially in socially or mentally challenging situations

Stage 5: Moderately severe cognitive decline
(Moderate or mid-stage Alzheimer's disease)
Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may:

  • Be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the high school or college from which they graduated
  • Become confused about where they are or about the date, day of the week or season
  • Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s
  • Need help choosing proper clothing for the season or the occasion
  • Usually require no assistance with eating or using the toilet

Stage 6: Severe cognitive decline
(Moderately severe or mid-stage Alzheimer's disease)
Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with daily activities. At this stage, individuals may:

  • Lose most awareness of recent experiences and events as well as of their surroundings
  • Recollect their personal history imperfectly, although they generally recall their own name
  • Occasionally forget the name of their spouse or primary caregiver,  but generally can distinguish familiar from unfamiliar faces
  • Need help getting dressed properly; without supervision, may make errors such as putting pajamas over daytime clothes or shoes on wrong feet
  • Experience disruption of their normal sleep/waking cycle
  • Need help with handling details of toileting (flushing toilet, wiping, and disposing of tissue properly)
  • Have increasing episodes of urinary or bowel incontinence
  • Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding
  • Tend to wander and become lost

Stage 7: Very severe cognitive decline
(Severe or late-stage Alzheimer's disease)
This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement.

  • Frequently, individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered
  • Individuals need help with eating and toileting and there is general incontinence of urine
  • Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.

As the disease progresses from mild to mid-stage, the signs of AD may become more noticeable to family members and friends. At this point, changes in the relationship usually occur, moving spouses or adult children beyond their inherent roles toward caregiving roles. Mid-stage is the longest of the three main stages and during this time, the reality of the disease hits home.

The hallmarks of this stage may include: an increase in memory problems, uncertainty about person, place and time, delusions, troublesome behaviors, incidents of wandering and getting lost, notable personality changes, decreasing motivation levels, disrupted sleep patterns, changes in communication and the performance of personal care tasks. This stage clearly leads to increased dependence on the caregiver for support.

Although there are certainly many focal points of AD to regard during the middle stage, five important considerations emerge: safety, managing behaviors, structured activities, caregiver support and using resources.

1) Safety :
Usually at this mid-stage, the need for caregiver assistance becomes essential for the safety of the individual with AD. A safe environment is critical at this point since problems with memory and judgment increase and the person with AD can become more vulnerable to fires, accidents or falls.

Focal points:

  • There may be times to gently remind the person about their diagnosis, especially as it relates to a safety issue.

  • As soon as (probable) Alzheimer’s disease is diagnosed, a person with AD should be carefully supervised, limited or even prevented from driving. The risk to self and other innocent people is greatly accelerated and although difficult, steps may need to be taken to remove the car keys and plan for alternative transportation.

  • Install home monitoring systems such as alarms, door locks or safety guards if needed.

  • Enroll the person with AD in the Alzheimer’s Association’s Safe Return Program or obtain an ID or medical alert bracelet for them to wear at all times.

  • At some point, safety issues such as not turning off the faucet or stove, or engaging in unpredictable or dangerous activities may determine whether a person needs 24 hour supervision or can continue living at home.

2) Managing Behaviors:
The symptoms of AD make it harder for people to maintain their former lifestyle and function in their surroundings. Many symptoms and behaviors can be better managed with varied communication styles, physician support and adjustments in the home environment that are suitable to the needs and limitations of the person with AD.

Focal Points:

  • Remember the worth of the person with AD and respond with reassuring, supportive care, and affection when able.

  • Refer to AD as a “memory problem” to help maintain dignity.

  • Support positive behaviors while not taking problem behaviors personally.

  • Remember that this disease is no one’s fault.

  • Consider managing behaviors such as wandering, aggressiveness or anxiousness with medication guidance from the physician.

  • If red flags are prevalent and caregiving becomes unmanageable or unsafe in the home setting, placement in an assisted living home, memory care facility or nursing home may need to be considered for the person with AD.
     

3) Structured Activities:
Apathy, lack of engagement and follow-through with activities are characteristic of all three stages, but are especially noted during the mid-stage period. That is why it is so important to focus on routine and structure for activities of daily living. Also, one of the most meaningful issues at mid-stage is engaging a person with AD in purposeful activities. Caregivers, family and friends may underestimate what the person with AD understands and over estimate what they can do independently.

Focal points:

  • Routines are reassuring to the person with Alzheimer’s and can be a substitute for the memory loss.

  • Plan for a daily walking program together with the person with AD to promote exercise and relieve stress.

  • Try to plan a structure for each day and include them in small projects that provide a sense of purpose and accomplishment.

  • Offer consistent behavior cues or demonstrations to encourage the person to finish a task.

  • Set milestones for the day such as showers, dressing, meals in the home or dining out, visiting with others, coffee breaks, walks, TV shows and bedtime routines.
     

4) Caregiver Support:
Alzheimer’s is an insidious disease and has profound and extreme effects on both the person with AD and the caregiver. About 80 percent of people diagnosed with AD are cared for at home by family members. Caring for a person with AD is more difficult than other types of family caregiving. Ultimately, the health and well-being of the caregiver will directly impact the care of the person with Alzheimer’s and determine the course of decisions to be made.

During the middle stages of AD, caregivers themselves begin to show signs of exhaustion and stress and often delay medical appointments and procedures that place their state of health at risk. Numerous studies over the past decades have shown that caregiving is associated with mental anguish and poor physical health, with the impact being greater for caregivers of patients with dementia. In a study published in 1999 in the Journal of the American Medical Association, elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63 percent higher mortality rate than non-caregivers of the same age. That is why it is so vital to keep self-care in the forefront throughout the entire caregiving experience.

Focal Points:
It is crucial that caregivers seek out medical as well as mental health support as they try to cope with anxiety, frustration, guilt, and grief and loss while moving through this stage.

AD gradually robs a person of their cognitive and functional abilities, thus leaving the caregiver with the job of providing 24-hour care. Caring for someone with AD can take its toll and it is at this stage that depression is highly detected among caregivers due to the lack of sufficient support and the incidence of troublesome behaviors.

In one study, conducted by Dr. Mary Mittelman of the NYU School of Medicine since 1987, spousal caregivers of patients with AD were given individual and family counseling, telephone support, and encouraged to participate in a support group. The goals of the study were to reduce the negative impact of caregiving on the caregiver, encourage family support and delay or avoid premature nursing home placement. The study showed, without a doubt, that counseling and social support, along with education, helped families keep AD patients at home longer. In addition, these interventions helped increase social connectedness which reduced the impact of loneliness and social isolation, and improved the well-being of caregivers, especially in the areas of stress, depression, and toleration of difficult behaviors.

Recent research has also shown that skill-building interventions for Alzheimer’s caregivers taught in health care settings and support groups leads to emotional and psychological improvements, including reduced caregiver burden. This is accomplished by teaching caregivers how to manage their time better, become more assertive in asking for help from others, direct their thoughts more positively and plan for the future.

5) Using Resources:
Asking for help is a sign of strength, not weakness, and caregivers do not need to try and do it all alone. Utilizing resources one at a time can help caregivers cope better and provide care longer in the home.

Focal Points:
One of the most effective ways to cope with caregiving is to communicate with and receive guidance from others such as social workers, counselors, physicians or clergy and by joining a local support group either in person or on the computer.

Keeping a daily journal for both the caregiver and care receiver is a great resource as one seeks the best care options, and details the care recipient's actual needs. It also can become a guide for the physician and for those who may have to step in and take a caregiver’s place on a short-term basis. The journal can record the caregiving experiences—what hurts, what works, and what brings success. Furthermore, it helps build a stronger foundation for this challenging voyage.

This is also the time to consider using services such as: adult day care programs or respite care support, home delivered meals, housekeeping and chore services, or a home health aide to provide personal care assistance.

Mid-stage often brings role changes within the relationship as the caregiver takes over the day to day affairs of the household, along with the legal and financial decisions.

The Alzheimer’s Association, local social services and the Area Agency on Aging can be contacted for many resources, especially information on legal and financial matters. The Internet also offers numerous resources and educational opportunities at the touch of a button.

Caregivers are a unique group of people who are capable of being resourceful, steadfast and persevering through difficult moments and times of hopelessness. The key is to find strength during this stage of AD through knowledge, skill building, and the support of others who have traveled down this road.  Amidst the anguish, there can still be many rewards in caring for a loved one with Alzheimer’s disease and above all, there is an abundance of support within reach for caregivers as they walk with their loved one on this unpredictable journey.

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