STAGES OF DEMENTIA
Dementia is a progressive disease with different stages. The rate of progression is variable and there is no set length to each stage. You will find numerous classifications of the stages of the disease online, but for simplicity purposes the Alzheimer’s Association and other medical professionals have divided the progression into three stages.
Early Stage:
-May still be able to function independently.
-Experiences impaired memory, but often tries to cover it up or deny it.
-Increased reliance on memory aids such as lists, notes, calendars.
-Loss of interest in complicated hobbies or chores.
-Needs reminding and prompting.
-Trouble remembering names of new acquaintances.
-Difficulty finding the right word.
-Forgets material they have just read.
-Loses or misplaces valuable objects.
-Increasing trouble with planning or organizing.
Caregiving in the early stage:
As a care partner (a term many choose to use rather than “caregiver,” since a person in the early stage of dementia may not need much assistance), you and the person with dementia have an opportunity:
-To plan for the future, including legal, financial, medical, and long-term care decisions. -To make decisions regarding available medications, treatments, and clinical trials as well as advance care directives.
This should be done now while the person with dementia can make proper decisions.
You can also assist by helping them make lists, maintain calendars, and by writing out instructions of things they may be having problems remembering such as how to adjust the heater or air conditioner.
Label contents of cabinets in the kitchen if they have difficulty remembering where things are.
Very important: Keep watch on their driving abilities. In many states in the US, doctors are required to report a dementia diagnosis to the department of motor vehicles and they require retesting.
Middle Stage.
Moderate Alzheimer’s is typically the longest stage and can last for many years. As the disease progresses, the person with dementia will require a greater level of care. During the middle stage of Alzheimer’s, individuals may experience:
-Greater difficulty performing familiar tasks.
-Increasing confusion of words.
-Frustration, anger, feels of withdrawal and isolation, depression, or acting in unexpected ways–such as refusing to bathe.
-Increasing forgetfulness–can no longer deny the problem or cover it up.
-Being unable to recall basic information such as their age, birth date, address, telephone number or the high school or college from which they graduated.
-Confusion about where they are or what day it is.
-Needing assistance to chose 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 changes, including suspiciousness, delusions, or repetitive behavior.
-Social withdrawal.
-Repetitive comments or questions.
-Anxiety in new situations or unfamiliar environments.
-Impaired abilities to manage day-to-day life.
-Many repetitive questions (because they don’t remember that they asked and/or the answer).
Caregiving in the middle stage.
As the abilities of the person with dementia changes, you will need to assume greater responsibilities . Daily routines and structure are important to help them feel secure. Use a white board to write down the schedule for each day. Be sure that the patient does not get dehydrated, as they may not remember to drink water.
The patient should definitely not be driving at this stage. Any weapons in the house should be removed or secured. You may need to assume bill-paying, banking, and financial functions. Make sure they are taking medications properly. You may also need to assume meal preparation duties.
If the patient wanders, install alarms on the doors to sound when they are opened. You may also check out the “MedicAlert+Alzheimer’s Association Safe Return” program. This is a 24 hour nationwide emergency response service for individuals with dementia who wander or have a medical emergency. Check it out at: https://alz.org.
During this stage you will need to determine what a person can do by themselves, what they can do with assistance, and what they cannot do at all. This may change on a daily or even hourly basis depending on brain functioning. Be especially alert to eliminate any activities that are deemed unsafe.
The Alzheimer’s Association offers online workshops that can prepare you for the skills needed to care for someone in this stage of the disease. Sharing information with other caregivers also can be a great source of information and support. Other caregivers truly understand the complex feelings associated with caring for a person with dementia. (You can do that right on this website!)
Late Stage.
-Needs full-time care.
-Cannot live independently.
-Highly impaired.
-Has severe memory loss–no memory or only fragments remaining.
-Develops personality changes/behavior problems.
-Communication impaired.
-Unable to make proper judgments, solve problems, or perform daily tasks.
-Needs help with personal care such as bathing and dressing.
-Experiences changes in physical abilities, including the ability to walk, stand, sit and, eventually, to swallow.
-Becomes vulnerable to infections, especially pneumonia.
Caregiving in the late stage.
At this point in the disease, the caregiver should focus on preserving dignity and quality of life. Late stage options for quality of life care might include sitting outside on a nice day; taking the patient for a “walk” using a wheelchair; preparing a favorite food; reading books; playing familiar music; watching favorite TV programs or a movie; reading the Bible; praying; or looking at old photos.
Individuals will need round-the-clock assistance with daily activities and personal care. In many cases, the person will be bedridden and/or need help with all daily functions: Meals, medications, bathing, dressing, bathroom, etc. This is the time to consider assisted living, skilled nursing care, or in-home care. You will need assistance!
Hospice is another option for late-stage care. Hospice focuses on quality and dignity of life by providing comfort, care, and support services for people with terminal illnesses and their families. In the US, to qualify for hospice benefits under Medicare, a physician must diagnosis the person with Alzheimer’s disease as having less than six months to live.
END OF LIFE
Not all symptoms occur, but most people experience some combination of the following in the final days or hours prior to death.
Loss of appetite. Energy needs decline, which affects appetite. Decisions should have previously been made regarding tubal feeding which actually does not extend the person’s life in late stage, does not make them more comfortable, and does not reduce the risk of aspiration pneumonia. Do not force-feed the person, as near the end they may be unable to swallow. Offer ice chips or sips of water.
Excessive weakness, fatigue, and sleep. The person may sleep the majority of time as their metabolism slows. Permit them to do so, but assume that everything you say can be heard, as the sense of hearing is thought to persist even when a person is unconscious, in a coma, or otherwise unresponsive. Focus on keeping the person comfortable.
Mental confusion, disorientation, and restlessness. The person may not be aware of where they are or who is in the room. They may respond less, respond to people who are not actually in the room, or have hallucinations. Identify yourself when you approach them, remain calm, speak softly and reassuringly.
Labored breathing. Breathing will become erratic. Slightly elevating the head and/or use of a vaporizer may help. Oxygen may also be prescribed for comfort. Chest congestion may also hinder breathing.
Incontinence. They may lose control of urinary/bowel functions. Keep them clean and comfortable.
Other symptoms. The patient may become cool to touch and/or veins and nails become bluish as circulation shuts down.
Final signs of death:
-No pulse.
-No breathing.
-No response.
-A bowel or bladder release.
-Relaxed muscles.
-Fixed eyes with partially shut eyelids.
