AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question Do you feel (as someone who has been there and done that) that a person can be overmedicated for the hip and back pain that Dr.'s say "go along" with Alzheimers?
My Aunt has it and is on 5 different pain meds.(which have done no good) and in addition is having to have pain injections in her back. What is the point of taking all the 5 pain meds. if they don't do any good?
My uncle asked the Pain Clinic this morning this very question and the Dr. told him to continue giving all meds. ( 11 combined.)
They are very elderly and think the Dr.s word is law. My Aunt is sleeping almost 24/7. No wonder?
They live in Florida and I live in Indiana so I can not be there to help or ask the Dr.s questions and I am very concerned. She is in the early stages being diagnosed only 5 months ago and is very alert when awake. She has 4 more appointments in the coming month with different Dr's. and my Uncle fears 4 more medications is coming.
Hope you can maybe advise me on what to tell him or what to expect in the way of Meds. for an Alzheimers patient.
Answer Connie,
Your aunt may well be having bad hip and back pain, but neither has ANYTHING to do with her Alzheimer's. If you do a search on the internet regarding symptoms or complications of Alzheimer's Disease, you will not find any mention of any kind of physical pain. Later stage Alzheimer's can cause a loss of mobility, but that is strictly related to loss of muscular coordination because of brain damage, and it doesn't hurt. Painkillers are not part of Alzheimer's medications at all.
So, I agree entirely, it is more than likely that she is being overmedicated into zombie-hood, and to what purpose I'm not sure, but it certainly has nothing to do with her Alzheimer's. It certainly is very dangerous, since Alzheimer's affects coordination and depth perception, so being drowsy from painkillers or other drugs is going to very greatly increase her risk of falling - never mind that she should not be sleeping all the time.
Typical Alzheimer's related medications include drugs like Aricept (donepezil)or Memantine (Namenda), galantamine, and rivastigmine. These drugs work to slow down the progress of the illness for some people, particularly the first two medications in combination. They don't work for everyone. Other medications a person with AD may be prescribed include antidepressants like Zoloft or Paxil - for obvious reasons. If a person has any idea what is happening to them, it can certainly make them very down and blue.
In mid to later AD, some people get very agitated or even can have delusions and hallucinations, so sometimes antipsychotics like Respiridol are used - they often can calm the person down and give them better quality of life. Sometimes people with AD will get their nights and days mixed up, so sleep aids may be a help.
More rarely, if a person is getting really wound up, and nothing else seems to work, a tranquilizer can be used temporarily. My mother in law only had a sedative once or twice in the whole time she was sick - and it was only required for a day or two when she got so agitated we just couldn't do anything with her.
Does your aunt have a specialist in Alzheimer's such as a neurologist or geriatric psychiatrist? He or she could do a good review of ALL the medications she is on to make sure she isn't taking too many, that they are necessary and at the right dosage, that there aren't interactions or side effects that could be impacting her mind. How was she diagnosed? Could her mental cloudiness be from the pain meds and not from Alzheimer's at all?
This happened to one of my husband's aunts. She had very bad osteoporosis, and her spinal vertibrae were collapsing, so she started taking all kinds of pain killers. Eventually, she was totally ga-ga because in an elderly person, many pain killers should be taken in smaller doses than in a younger person, because their bodies can't process them quickly, and the drugs can actually accumulate. The senior's residence was going to kick her out, but once her son dragged her to a good doctor and all her medications were confiscated, reviewed, and cut back....surprise, surprise, her mental clarity came around amazingly.
She really does need someone good who can coordinate all her care since specialists often don't talk to each other very well, and absolutely, a careful review of all her meds is in order. I'd be inclined to get her to stop taking everything but what is absolutely necessary for other health problems, and then see how she does, and then if she's hurting only adding back ONE painkiller. Adding more drugs to the brew when the current ones aren't working isn't doing her any good at all.
Below my signature, I've pasted the stages of Alzheimer's so you can see for yourself, back and hip pain are not related.
Perhaps your uncle is himself a bit confused and not really understanding what the doctor is telling him about your aunt (??). Are there other family members who have powers of attorney for medical decisions who might be able to talk to the doctors involved and get a clearer idea of what is going on? If no one has powers of attorney, time to get that straightened out - your uncle will need a lot of help and support as this thing progresses.
Hope this helps - get back to me if I haven't adequately answered your question or you need more.
Mary Gordon
Toronto
Stages of Alzheimers
In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of Alzheimer's disease. Even today, years later, when experts referto a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's scale of seven stages.
Adapted from Reisberg, B., Ferris, S.H., Leon, J.J. & Crook, T. The global deterioration scale for the assessment of primary degenerative dementia. American Journal of Psychiatry, 1982
Level 1
No cognitive decline - (or Normal Adult). No subjective complaints of memory deficit. No memory deficit evident on clinical interviews.
Level 2
Very mild cognitive decline (forgetfulness or normal older adult). Subjective complaints of memory deficit, most frequently in the following area:
(a) forgetting where one has placed familiar objects;
(b) forgetting names on formerly knew well.
No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern regarding symptoms.
Level 3
Mild cognitive decline (early confusional or Early AD). Earliest clear-cut deficits. Manifestations in more than one of the following areas:
(a) patient may have gotten lost when traveling to an unfamiliar location;
(b) co-workers become aware of patient's relatively low performance;
(c) word and name finding deficit becomes evident to intimates;
(d) patient may read a passage of a book and retain relatively little material;
(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;
(f) patient may have lost or misplaced an object of value;
(g) concentration deficit may be evident on clinical testing.
Objective evidence of memory deficit obtained only
with an intensive interview. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms.Deficits noticed in demanding employment situations.
Level 4
Moderate cognitive decline (Late Confusional or Mild AD). Clear-cut deficit on careful clinical interview. Deficit manifest in following areas:
(a) decreased knowledge of current and recent events;
(b) may exhibit some deficit in memory of one's personal history;
(c) concentration deficit elicited on serial subtractions; (d) decreased ability to travel, handle finances, etc.
Frequently no deficit in the following areas:
(a) orientation to time and person;
(b) recognition of familiar persons and faces;
(c) ability to travel to familiar locations.
Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawal from challenging situations occur.
Level 5
Moderately severe cognitive decline (Early Dementia or moderate AD). Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know
their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.
Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to orient in familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur.
These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may
continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.
6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence
Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control.
The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently
present.
7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost
