The older view was that there can only be a one-way journey, from the left to the right. Now, however, as a richer body of evidence becomes available…that view is no longer tenable. Some people undergo a degree of ‘rementing’, and reacquire capacities for meaning-giving that had, apparently, been lost. Also, as more is learned about how to give psychotherapeutic help to people with dementia, it is becoming clear that some can actually acquire new forms of ‘feeling language’, and it may be possible to work through some of the experiences of pain and ‘relax into’ cognitive impairment. —Tom Kitwood, “Dementia Reconsidered”
Rementia comes about by exceeding basic survival needs. Independence and free will are honored. If we lose faith in people with brain conditions, the chances of rementia are slim.
Thus, dementia describes a person who is “out of his mind.” The word demented is not a very nice way to describe a person or to perceive persons struggling with cognitive impairment. Dementia is not a medical diagnosis, although people commonly believe so. The term dementia is used to describe certain characteristics such as:
• memory loss,
• inability to carry out tasks
• poor judgment and decision making
There are many types of dementia; however, the three most prevalent forms I have worked with in long-term care are Alzheimer’s disease, Cerebral Vascular dementia (following a stroke or other brain injury), and Parkinsonian/Lewy Body type dementia. A combination of these conditions is found in long-term care settings, making it harder to gauge a person’s abilities.
Alzheimer’s disease: Alzheimer’s disease (AD) accounts for approximately 50 percent of the cases of dementia, and it is estimated that 50 percent of persons over the age of 85 have exhibited the signs and symptoms of AD (Alzheimer’s Association website, San Diego Chapter, 2013). There are two types of AD. One occurs in the population of persons age 65 and older and the other, known as Early Onset Alzheimer’s, can strike as early as the late twenties.
Alzheimer’s disease is characterized by a profound loss of memory and is usually a very long and progressive illness. AD is a terminal illness and there is no cure or known way to stop the course of the disease. After an average of 8-11 years from the time of diagnosis, the brain completely shuts down, resulting in major organ failure and death.
Alzheimer’s disease is often broken down into three stages, and sometimes those stages are broken into seven different levels. With regard to engagement and ability, I have seen a wide range of skills and comprehension in persons considered “early stage” and “middle stage.” Therefore, I find the stages to be over-generalizing and possibly a contributing factor in not fully meeting the engagement needs of persons with AD. If we believe in the stages absolutely and read in a chart that a person is in “middle stage,” we may assume he is not going to be capable of following a step-by-step process. Or vice versa, we may see a person in early stage and believe he is capable of more than he is currently demonstrating.
For the purpose of describing the phases of the disease, I will follow the standard language of early, middle, and late. The staging method can be useful to explain approximately where a person is in the disease process.
· Memory loss becomes apparent
· Takes longer to complete tasks
· Working memory affected – forgetting steps in process
· Difficulty managing money
· Mood changes
· Increased anxiety, fixated on certain wants/needs/ideas
· Confusion in familiar places
Persons in the early stage are often in good physical health. The majority whom I have cared for had no other diagnosis and took very little, if any, medications other than those prescribed to lesson the symptoms of AD. A person with early AD may seem like any other person during short conversations. Social skills, such as manners, usually stay intact throughout the early stages.
· Language is affected – word searching, incomplete sentences
· Social skills may disappear – manners, courtesy, may be inappropriate
· Physical ability starts to decline – difficulty with large body movements
· Awareness of conscious thought disappears
· Decreased reasoning ability
· May begin “wandering” (what I call “searching”)
· Shows agitation more easily
· May be suspicious or paranoid or even have hallucinations
· Repetitive statements and/or movements – nodding head over and over
· May have incontinent episodes
· May begin confusing strangers for familiar people
· Instinctive behavior is strong – need for safety, nourishment, sexual tendencies
The middle stage is usually the longest phase of the disease process. Persons may stay at a particular level of functioning for extended periods of time without drastic changes in functionality. Skill level with self-care varies, as will ability to participate in activities that require following instructions or creativity. Concentration for long periods (such as watching a movie) becomes difficult.
The “filter” with regard to what is acceptable in public becomes thin. During this stage, a person may be “time traveling,” speaking from a place of memory and seeking familiar persons and places and belongings that have been absent from daily life for many years.
· Does not seem to recognize family, loved ones, close friends
· Verbal communication is minimal – unable to effectively express needs or converse
· May yell, scream, moan loudly
· Unable to care for self on any level
· Appears disconnected from environment
· Has lost large motor skills control – unable to walk or reposition self in bed
· No control of bowel and bladder
· Instinctive behavior disappears (stops eating)
Persons in late stage become ‘bed bound’ or ‘wheelchair bound.’ Appetite is gone completely and nourishment is obtained only with assistance from others. Providing assistance with bathing and grooming, and incontinent care, can be very challenging, and often persons in this stage may be combative when receiving assistance.
Please understand that the theory of rementia is not about curing Alzheimer’s Disease. AD is a degenerative brain disease. We can either contribute to the further decline in a dementia condition, or we can contribute to rementia. Caregivers and the environment in which people live make all the difference. We can provide services that heal, even in the last months of life.