Taking Care of Alzheimer’s Late Stages Patient

In the later phases of Alzheimer’s disease (AD), it becomes evident that in spite of the best care, attention, and treatment, your loved one is approaching the end of life. At this stage, a patient can no longer communicate directly, is totally dependent for all personal care, and is generally confined to bed. Unable to recognize once cherished people and objects, or to verbally express basic requirements, the person with Alzheimer’s completely depends on sensitive caregivers to advocate, connect, and attend to her needs.

Many caregivers finally acknowledge their own needs for significant help. This period may last from a matter of months to three years, and calls for revised strategies, tough decisions, and an expanded team. Understanding and anticipating these changes provides a framework from which to proceed.

Advanced illnesses, physical safety needs, and the 24-hour demands of final stage caring often prompt additional in-home interventions or out-of-home placement. Although many caregivers want to keep their loved ones at home, this requires stamina, space, and considerable support from others.

Although there are no right or wrong answers, multiple changes can be especially difficult for a patient with advanced dementia. Adjustment to placement is easier before the end stage. Care and placement decisions should reflect the patient’s current needs, plans for her eventual death, and the caregiver’s health, financial, and emotional needs.

When patients with Alzheimer’s disease (AD) reach the final stages, their caregivers have grieved physical, cognitive, and behavioral regression for years. Many struggle to make difficult treatment, placement, and intervention choices through a prism of continuous and profound loss. As your loved one’s serious decline becomes more evident, the skills and understanding cultured during caregiving can keep you engaged and committed.

Late Stage Symptoms

The late stage of Alzheimer's may last anywhere from several weeks to several years. Intensive, around-the-clock assistance is usually required. Caring for the person with Alzheimer's disease is most successful when the focus is on preserving quality of life and dignity and treating the person with compassion and respect.

In the last stage of Alzheimer's disease, a person usually:

• Little to No Memory: Short- and long-term memory is severely impaired.
• No recognition of family or friends. The person may not recognize him or herself in the mirror. They may think that their spouse is a stranger or the person in the mirror is a stranger.
• Great Difficulty Communicating With Others: The person may be unable to speak or understand words.
• Difficulty Remembering How to Eat: The person may have difficulty coordinating the steps of biting, chewing, swallowing, etc. Despite good nutrition and meal supplements, typically there is weight loss.
• Difficulty with Coordinated Movements: The person may walk unsteadily. Fumble when grasping objects, to be unable to hold onto objects. Needs assistance walking and eventually becomes bed-ridden or chair-bound.
• Increased Frailty: Muscles may weaken and people are susceptible to infections, pneumonia, and other physical illnesses.
• Loss of Bowel and/or Bladder Control.
• Upset Sleep Cycle: The person may be able to sleep only with the help of sleep medications.
• Needs full-time help with personal care, activities, or interactions, including toileting.

General Recommendations

End stage changes are often more difficult for family members than patients. Intricate and highly personal decisions can shift focus from comfort and dignity to unresolved personal or relationship issues. Following are tips for making patient-centered determinations in this last period of life:

• Prepare early as possible for the inevitable outcomes. The AD journey is eased considerably when placement, treatment, and end-of-life conversations are held in the first stages. Consider using the Five Wishes process to guide and formalize your discussion. Seek financial and legal advice while your loved one can participate. Consider hospice services, spiritual practices, and memorial traditions before they are needed. When caretakers simply implement their loved ones’ preferences, they are free to emphasize care and compassion.
• If your loved one did not prepare a living will or advanced directives while competent to do so, act on what you know or feel his wishes are. Make a list of conversations and events that illustrate his views. To the extent possible, consider treatment, placement, and decisions about dying from his vantage point.
• Family members vary in their capacities for emotional openness and expression. When stress and grief are heightened by a loved one’s deterioration and withdrawal, conflict may result. If you are unable to agree on living arrangements, medical treatment, or end-of-life directives, ask a trained doctor, social worker, or hospice specialist for mediation assistance. Prolonged disagreement can impact your ability to grieve and hamper your well-being.
• Choosing a primary decision maker and a communicator to manage information facilitates family involvement and support. Even when families know their loved one’s wishes, implementing decisions for or against sustaining or life-prolonging treatments requires communication and coordination.

• If children are involved, make efforts to include them. Children need honest, developmentally appropriate information about your loved one’s condition and any changes they perceive in you. They can be deeply affected by situations they don’t understand, and may benefit from drawing pictures or using puppets to simulate feelings, and hearing stories that explain events in terms they can grasp.
• Insuring a loved one’s final years, months, or days are as good as they can be is not just a series of resource and care choices. Learning to live through grief, celebrate your accomplishments, and honor your loved one’s life will shape your emotions and determine your tasks.
• Passage through the final stage of Alzheimer’s disease is affected by several factors: economics, family and friends, care options, and caregiver resilience. Ideally, the patient’s pain is well controlled, interactions acknowledge her remaining emotional presence, caregivers and other family members are supported, and there is time for a calm, peaceful goodbye. Your tasks may include the following actions.

Partnering to manage pain

Even in the last stages, patients with Alzheimer’s disease communicate discomfort and pain. Pain and suffering cannot be totally eliminated, but you can help make them tolerable.

Managing pain and discomfort requires daily monitoring and reassessment of subtle nonverbal signals. Especially when a dramatic decline in functioning occurs, families may choose to discontinue other medical interventions and focus on palliative care for the pain and symptoms associated with dying. With adequate help, this care can be provided at home.

Subtle, behavioral changes can signal unmet needs. Communicating written observations, times, and events to your medical team will provide valuable clues about your loved one’s pain status. The soothing properties of touch, massage, music, fragrance, and a loving voice can also reduce pain. Be open to trying different approaches and observe your loved one’s reactions.

Connecting and loving

Sharing human kindness through the final stages of Alzheimer’s disease takes many forms. Even when patients cannot speak or smile, their emotional memories remain.

Staying calm and attentive will create a soothing atmosphere and communicating through sensory experiences such as touch or singing can be reassuring to your loved one. Contacts with pets or trained therapy animals bring pleasure and ease transitions for even the most frail. Surrounding a loved one with pictures and mementos, reading aloud from treasured books, playing music, giving long, gentle strokes, reminiscing, and recalling life stories promote dignity and comfort all the way through life’s final moments.

Caring for yourself

As impossible as it may seem, taking care of yourself during your loved one’s final stages is critically important. Research shows spousal caregivers are more likely to experience despair while adult children find fulfillment through their caregiving roles. In any case, it is important to learn how to adjust, feel whole again, and move on.

Ironically, the extended Alzheimer’s journey gives families the gift of preparing for, and finding meaning in their loved one’s end of life. When death is slow and gradual, many caregivers are able to prepare for its intangible aspects, and to support their loved ones through the unknown. Even with years of grief, others find themselves unprepared and surprised when death is imminent.

Talking with family and friends, consulting hospice services, bereavement experts, and spiritual advisors can help you work through these feelings and focus on your loved one. Palliative care specialists and trained volunteers assist not only on the dying person, but also caregivers and family members.

From the moment of a loved one’s Alzheimer’s diagnosis, a caregiver’s life is never the same. It can, however, be happy, fulfilling, and healthy again. Replacing lost relationships, using your experience to help others, and gaining new perspective will help your return to normalcy.

Can you take care of the person with Alzheimer’s disease at home?

At some point you may need to re-evaluate your approach if you want to keep your family member at home, or it will be the best for everyone to consider the special accommodation. Definitely, economic reasons come in action, since long-term care for Alzheimer’s might be very expensive, you might not be able to comply with the required monetary obligations.

• Is qualified, dependable support available to insure 24 hour care?
• Will your home accommodate a hospital bed, wheelchair, and bedside commode?
• Are transportation services available to meet daily needs and emergencies?
• Is professional medical help accessible for routine and emergency care?
• Are you able to lift, turn, and move your loved one?
• Can you meet your other responsibilities and your loved one’s needs?
• Are you emotionally prepared to care for your bed-ridden loved one?

Sources and Additional Information:

http://www.seniorservicehub.com/late-stage-and-end-life-alzheimers-care

http://www.helpguide.org/elder/alzheimers_disease_dementia_caring_final_stage.htm

http://www.intergens.com/featurearticle-26.html

http://www.ec-online.net/knowledge/Articles/latealz.html

Progress of Alzheimer’s disease: Timeline and Stages

Experts have documented common patterns of symptom progression that occur in many individuals with Alzheimer’s disease and developed several methods of “staging” based on these patterns.

Staging systems provide useful frames of reference for understanding how the disease may unfold and for making future plans. But it is important to note that not everyone will experience the same symptoms or progress at the same rate. People with Alzheimer’s die an average of four to six years after diagnosis, but the duration of the disease can vary from three to 20 years.

While each individual is different, the progression of his or her disease can be roughly divided into three stages — mild, moderate and severe.

Mild Alzheimer's disease (2 – 4 years)

People in the early stage of Alzheimer's may experience memory loss, lapses of judgment and subtle changes in personality. They often have decreased attention span and less motivation to complete tasks. In addition, they may resist change and new challenges, and get lost even in familiar places.

While everyone occasionally forgets words or names during conversations, this problem occurs with increasing frequency in people with mild Alzheimer's. They may substitute or make up words that sound like or mean something like the forgotten word. They sometimes even avoid talking to keep from making mistakes and appear subdued or withdrawn — especially in socially or mentally challenging situations.

They may also put things in very odd places. For example, a wallet may end up in the freezer, or clothes may go into the dishwasher. They may ask repetitive questions or hoard things of no value. When frustrated or tired, they may become uncharacteristically angry.

Moderate Alzheimer's disease (2 – 10 years)

In the middle stage of Alzheimer's, people can't organize thoughts or follow logical explanations. They lose the ability to follow written instructions and often need help choosing proper clothing for the season or occasion. Eventually, they'll require help getting dressed because their confusion may cause them to put their pajamas on over their daytime clothes or their shoes on the wrong feet. They may also have episodes of urinary or fecal incontinence.

It's usually during this stage that people start having problems recognizing family members and friends. They may mix up identities — thinking a son is a brother or that a spouse is a stranger. They may become confused about where they are and what day, season or year it is. They become unable to recall their address or phone number.

Because they lack judgment and tend to wander, people with moderate Alzheimer's disease aren't safe on their own. They may exhibit restless, repetitive movements in late afternoon, or continually repeat certain stories, words or motions, such as tearing tissues.

Problems with communication worsen during the moderate stage of Alzheimer's. This can lead to a variety of challenging behaviors, including:

• Paranoia that sometimes provokes accusations of infidelity or stealing
• Agitation, frustration or anger that can lead to cursing, kicking, hitting, biting, screaming or grabbing

Severe Alzheimer's disease (1 – 3+ years)

People in the last stage of Alzheimer's require help with all their daily needs. They lose the ability to walk without assistance and then the ability to sit up without support. They are usually incontinent and may no longer speak coherently. They rarely recognize family members. Swallowing difficulties can cause choking, and they may refuse to eat.

How long?

The rate of progression varies widely among individuals. For some, severe dementia occurs within five years of diagnosis. For others, it can take more than a decade. On average, people with Alzheimer's live for eight to 10 years after diagnosis. Some live as long as 20 years. Most people with Alzheimer's don't die of the disease itself, but of pneumonia, a urinary tract infection or complications from a fall.

While the three-stages-classification is commonly accepted by experts, it has the certain limitation, which requires more detailed analysis within the same stages of the disease development process for more precise and focused treatment offerings.

This framework, based on a system developed by Barry Reisberg, M.D., Clinical Director of the New York University School of Medicine’s Silberstein Aging and Dementia Research Center, offers the seven-stage approach, with correlation to the widely used concepts of mild, moderate, moderately severe and severe Alzheimer’s disease. Sometimes, this framework is referred as FAST scale or Global Deterioration Scale (GDS).

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 as if they have memory loss and 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
Early-stage Alzheimer's can be diagnosed in some, but not all, individuals with these symptoms

 Friends, family or co-workers begin to notice deficiencies. Problems with memory or concentration may be measurable in clinical testing or discernible 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 college or high school 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 retain substantial knowledge about themselves and know their own name and the names of their spouse or children
• 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 customary 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 such errors 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 fecal 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.

Sources and Additional Information:

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

http://www.mayoclinic.com/health/alzheimers-stages/AZ00041

http://www.helpguide.org/elder/alzheimers_disease_symptoms_stages.htm

http://www.workingcaregiver.com/articles/alzheimers/threemajorstages

http://www.alzheimer.ca/english/disease/progression-intro.htm#GDS

http://www.caring.com/articles/alzheimers-stages