Perhaps the paradigm to which most people adhere--or that most people understand to be the case--is that the many forms of dementia are progressive and are fatal. While the progressive nature of dementia is apparent in many forms, not all forms of dementia are progressive. For progressive forms of dementia, however, the disease typically presents in identifiable stages that reflect the severity of the patient's condition along the disease's continuum. Understanding the symptoms characterizing each stage provides a map by which patients, caregivers, and medical professionals may assess the progression of the disease. Of note, one must realize that each individual's journey is unique to the individual; these are guidelines for each stage, not definitive black-and-white checklists/checkpoints.
For simplicity's sake, three stages will be explored, although some medical professionals further divide these stages into the seven identified in the Reisberg Scale. These three fundamental stages are mild, moderate, and severe, each with characteristics that serve as guidelines to assist caregivers and medical providers in determining the best course of action in caregiving and treatment needs.
Mild (or Early) Stage
This is the first stage where people begin to notice symptoms that differ from the normal way a person acts, communicates, understands, or moves. It is also the stage at which these anomalies begin to interfere with how the individual conducts their daily life. When assessing these anomalies, there are variables that must be factored into consideration, including:
How the individual functioned over the last 5-10 years
The individual's intelligence level
The education level of the individual
The individual's overall health--physical/emotional/psychological
The environment within which the individual's functioning was observed
SO, how then does the non-medical professional come to understand these symptoms related to the individual's functioning? Unfortunately, these symptoms may have differential
diagnoses associated with them; however, these symptoms should be an indication that a comprehensive evaluation by a medical professional is warranted. These include:
Difficulty with daily tasks that were previously performed easily
Difficulty in concentration
Difficulty in organizing and planning
Work product deficiencies
Noticeable verbal repetition of tasks--assigned or taken on without specific assignment, potentially signaling the start of memory problems.
As previously alluded to, recognizing these signs provides an indication that comprehensive evaluation by medical professionals should occur. This is a most important step because early intervention may result in applying treatments and/or therapies that may delay or slow progression of the disease. This early intervention may result in a more positive quality of life for a longer period of time for many individuals.
Moderate (or Middle) Stage
In this stage, the individual begins to draw away from social life, becoming more isolated. Their ability to rationalize, problem-solve, and use good judgment become impaired. They
not only find it difficult to function outside their home, but may even need assistance with performing common household tasks--this stage typically marks the end of an individual's ability to function and live independently, necessitating the start of caregiving for basic life skills and safety. Although they may be able to accomplish simple tasks, it is often necessary to provide reminders and task aids or simplified instructions to the individual.
Some of the tell-tale signs and symptoms of an individual progressing into the moderate (middle) stage of dementia include:
Emotional withdrawal
Non-responsive to other people
Confusion
Forgetfulness
Memory loss
They may also exhibit behavioral changes, including:
Anxiety
Depression
Paranoia
Although it is preferable to have accomplished these necessary discussions and tasks while the individual is in the mild (early) stage, it is imperative that a person have all their legal and medical documents, paperwork, powers of attorney, end-of-life planning, and other essential documents completed while they still maintain the mental elements to accomplish them with appropriate professionals. Note: It is essential that these things be accomplished before the individual becomes incapacitated and no longer able to act on their own behalf.
At this stage, the individual requires caregiving or other supervision to ensure that essential tasks are accomplished, such as:
Taking medication
Eating proper diet
Performing their necessary daily life tasks
Providing opportunities to live life as fully as possible
Having documents completed and caregiving arranged provides for emergency measures to occur when/if needed because someone is always close to the individual. At this point, those entrusted with the individual's affairs should be exploring long-term care and end-of-life care options.
The reason that starting early to learn if dementia is a proper diagnosis and what type of dementia is diagnosed is because the most critical thing for a dementia patient is to have a support network of family and close friends. This will assist them in accepting their condition (not unlike going through the stages of grief to get to acceptance) and have people who care about them who may help them live life to its fullest within their capacity. This also serves to lower stress on the patient--as well as supporters--when more than a single individual is there to support the patient, which helps to keep a depressive state from worsening the patient's prognosis.
The Severe (or Late) Stage
It is at this point that the individual is completely dependent upon the care provided by others. This includes 24/7 supervision and assistance to ensure that their basic human needs are met--focusing now on the most foundational or fundamental tiers of Maslow's Hierarchy of Human Needs. The patient now requires assistance in every task, including such basic tasks as:
Eating
Getting in/out of bed
Walking
Bathroom use
Personal hygeine
The patient may likely no longer recognize family or close friends and will have trouble communicating. Eventually, they will no longer be able talk or walk at all.
Caregiving is an extremely stressful role in the dementia journey; in fact, 55% of family caregivers die before the person for whom they are caring because of stress, lack of rest and respite, and sacrificing their own health for the well-being of the family member. Hiring professional caregivers is a good option, whether for full-time assumption of caregiving or to relieve the family caregiver at certain intervals to provide the family member with rest and respite opportunities. Importantly, just because you need caregiving help--or need residential caregiving--you are not abandoning your loved one; rather, you are providing the care they need when they can no longer comprehend things themselves.
Lists in this article adapted from Earlstein, F. (2016). Dementia Facts & Information. NRB Publishing: Nevada.
For more resources and references on General Dementia topics, see the following:
General News & Research: https://www.drcarlforkner.com/dementia-memory-news