Companioning People with Dementia by Rita Hansen, John R
Total Page：16
File Type：pdf, Size：1020Kb
CONTEXTS & CULTURES Companioning People with Dementia by Rita Hansen, John R. Mabry, and Robert B. Williams ood Morning, I’m Arthur James. occasions when he doesn’t even recognize Alice in pho- Wasn’t the service enjoyable? I tos, except in those taken when she’s wearing her nurse’s like coming to Holy Trinity.” For uniform. the umpteenth time Arthur James Arthur is totally dependent on Alice for everything. introduces himself to other faith- He is unable to write, drive, shop, plan, or carry out even “Gful worshipers at the service as though they had never simple household chores, adequately maintain his per- before met. They all know Arthur, who is a spry, sonal hygiene, select clothing appropriate for the occa- cheery, and pleasant 80-year-old who accompanies sion or season, find the bathroom, or recognize the his wife, Alice, to church every week. During the wor- voices of relatives or friends on the phone. He depends ship service, Arthur knows exactly what to do. He upon assistance and cues from others for normal life sings, recites prayers and psalms, stands, processes, experiences he knew and lived before being afflicted kneels to reverently receive communion, and is able to with a loss of his “everyday memory.” This loss has been return unassisted to his place in the pew. From the view noted by Arthur’s physician as a likely symptom of of any observer, Arthur’s behavior during the service is dementia. really no different than anyone else’s. It is Arthur’s recur- ring introductions of himself and his need to be reac- The Burdens of Dementia quainted with those who are with him every week that Those afflicted with dementia have problems applying reveals something of the problems that he and his wife their thinking to ordinary tasks such as dressing, person- are coping with. al hygiene, or remembering words or names. Over time, Occasionally, Arthur and Alice attend social activities a person’s ability to live a self-directed life is progressive- at Holy Trinity. At a recent ham and bean supper, ly reduced by problems with thinking and remembering. Arthur was unable to recognize Pastor Green, who was Such problems are symptoms of dementia, seen in per- dressed in a flannel shirt and jeans. This was surprising sons with Alzheimer’s disease; Lewy body disease; vascu- because Arthur had always addressed Pastor Green lar dementia and dementia due to other medical quite enthusiastically when greeting him after services. conditions such as HIV; head trauma; Parkinson’s dis- Arthur was not able to recognize him because he was ease; Huntington’s disease; Pick’s disease; or Creutzfeldt- “out of uniform.” Alice told us that Arthur does not rec- Jacob disease. Symptoms of dementia are due to actual ognize himself in recent photos. He can point himself physical changes occurring in one or more parts of the out in photos taken when he was an adolescent and a brain. With the exception of Creutzfeldt-Jacob, most young adult, but not beyond those years. Arthur has people afflicted with dementia experience a slow decline Volume 9 No. 3 • October 2003 45 CONTEXTS & CULTURES in thinking and remembering.1 Prior traits and behavior become exaggerated in 1 | No cognitive decline. No subjective com- people with Alzheimer’s. No one really knows when plaints of memory deficit. No memory deficit Alzheimer’s begins, and the symptoms or signs are differ- evident on clinical interview. ent for every person. A positive diagnosis can only be made in autopsy. The key is to observe a progression of 2 | Very mild cognitive decline (Age Associated change in behavior, cognition, and emotion. Memory Impairment). Subjective complaints of Because of their uneven decline in thinking and memory deficit, most frequently in the following remembering, persons with dementia often surprise fam- areas: (a) forgetting where one has placed ily, pastors, and other caregivers by their responses. familiar objects; (b) forgetting names one former- Arthur is a good example because he can participate ly knew well. No objective evidence of memory fully in worship services but is limited in activities of daily deficit on clinical interview. No objective living. Further, pastoral care personnel have observed deficits in employment or social situations. responses that we have been taught are beyond the capa- Appropriate concern with respect to symptoma- bilities of a person with Alzheimer’s. We do not really tology. know enough about these people in general and we must tailor our pastoral or spiritual offerings for individuals. 3 | Mild cognitive decline (Mild Cognitive Impairment). Earliest clear-cut deficits. Early Stages: Manifestations in more than one of the following Recognizing Dementia in Directees areas: (a) patient may have gotten lost when When Pamela showed up for her regular spiritual traveling to an unfamiliar location; (b) co-work- direction session, she was upset and shaken. “Let’s take a ers become aware of patient’s relatively poor minute of silence to center ourselves,” suggested Leslie, performance; (c) word- and name-finding deficit her spiritual director. When she was calmer, Pamela becomes evident to intimates; (d) patient may explained that she seemed to be forgetting things more read a passage or a book and retain relatively and more, and she was starting to panic. “I went to the little material; (e) patient may demonstrate supermarket because Jane and the kids were coming for decreased facility in remembering names upon supper. But when I got there, I forgot what I had come introduction to new people; (f) patient may have for, and for a few minutes, I couldn’t figure out where I lost or misplaced an object of value; (g) concen- was. I was so scared I was shaking.” Leslie was tempted tration deficit may be evident on clinical testing. to say, “I forget what I went to the store for all the time!” Objective evidence of memory deficit obtained But Pamela was crying now, and she realized this was only with an intensive interview. Decreased per- more serious than simple forgetfulness. formance in demanding employment and social Memory loss in elderly people is normal, and does not settings. Denial begins to become manifest in necessarily denote the onset of dementia. Pamela’s expe- patient. Mild to moderate anxiety accompanies rience may have been a simple case of age-associated symptoms. memory impairment, but the red flag had been waved. Leslie made a mental note of the experience and 4 | Moderate cognitive decline (Mild between sessions educated herself on the signs of demen- Dementia). Clear-cut deficit on careful clinical tia. When Pamela’s experiences persisted, Leslie strongly interview. Deficit manifest in following areas: (a) recommended a medical consultation. Pamela was in decreased knowledge of current and recent strong denial for a while, but when another “episode” events; (b) may exhibit some deficit in memory occurred while she was driving, she finally went to her of one’s personal history; (c) concentration doctor. deficit elicited on serial subtractions; (d) Continued on page 48. 46 Presence: An International Journal of Spiritual Direction The Global Deterioration Scale for Assessment of Primary Degenerative Dementia decreased ability to travel, handle finances, etc. travel assistance but occasionally will be able to Frequently no deficit in following areas: (a) orienta- travel to familiar locations. Diurnal rhythm frequent- tion to time and place; (b) recognition of familiar ly disturbed. Almost always recall their own name. persons and faces; (c) ability to travel to familiar Frequently continue to be able to distinguish famil- locations. Inability to perform complex tasks. Denial iar from unfamiliar persons in their environment. is dominant defense mechanism. Flattening of Personality and emotional changes occur. These affect and withdrawal from challenging situations are quite variable and include: (a) delusional frequently occur. behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in 5 | Moderately severe cognitive decline (Moderate the environment, or to their own reflection in the mir- Dementia). Patient can no longer survive without ror; (b) obsessive symptoms, e.g., person may con- some assistance. Patient is unable during interview tinually repeat simple cleaning activities; (c) anxiety to recall a major relevant aspect of his or her cur- symptoms, agitation, and even previously nonexist- rent life, e.g., an address or telephone number of ent violent behavior may occur; (d) cognitive abul- many years, the names of close family members la, i.e., loss of willpower because an individual (such as grandchildren), the name of the high cannot carry a thought long enough to determine a school or college from which they graduated. purposeful course of action. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated per- 7 | Very severe cognitive decline (Severe son may have difficulty counting back from 40 by Dementia). All verbal abilities are lost over the 4s or from 20 by 2s. Persons at this stage retain course of this stage. Frequently there is no speech knowledge of many major facts regarding them- at all—only unintelligible utterances and rare emer- selves and others. They invariably know their own gence of seemingly forgotten words and phrases. names and generally know their spouses’ and chil- Incontinent of urine, requires assistance toileting dren’s names. They require no assistance with toi- and feeding. Basic psychomotor skills, e.g., ability leting and eating, but may have some difficulty to walk, are lost with the progression of this stage. choosing the proper clothing to wear. The brain appears to no longer be able to tell the body what to do. Generalized rigidity and devel- 6 | Severe cognitive decline (Moderately Severe opmental neurologic reflexes are frequently pres- Dementia).