This material has been developed by and is presented by The Sandwich Generation (r)
the tragedy of Alzheimers
Coping With Dementia
by Carol Abaya, M.A.
Alzheimerís.... One of the most dreaded words in modern language.ÝÝÝ A progressive, degenerative disease that is robbing 4 million Americans of their minds and eventually all physical capabilities.Ý A disease for which there is no known cure.
Alzheimerís is one of the leading causes of adult deaths, and respects no ethnic, age or financial boundaries.Ý A person can ěsufferî from it for many years, and not even know it.
As described in a booklet ěCoping and Caringî by AARP, ěIt is a dementing disease, a thief of minds, a destroyer of personalities, wrecker of family, finances, a killer.î
It robs people of the most fundamental things that make them humanÝ --Ý memory, personality and the ability to think.
While researchers do not really know what causes Alzheimerís, they do know that Alzheimerís patients have changes in brain tissues and nerve endings that interfere with normal brain functions.
David G. Allen, RN, Ph.D, University of Washington School of Nursing in Seattle, explains it this way.Ý ěThink of the normal brain as a highly organized, complex network of electrical wires which carry information from one part of the brain to another or from the brain to other parts of the body. ÝThese wires donít actually touch; there is a tiny gap.Ý Ordinarily an electrical impulse reaches the end of one wire and releases a chemical messenger that flows across the gap to the next wire and triggers an electrical current.
ěIn the brain of an Alzheimerís patient, the once neatly arranged wires are twisted and looped with messy deposits of proteins, metals and other substances.Ý These tangles disorganize, reduce or even block the brainís information flow, misdirecting and sending conflicting signals.î
In addition, it is known that thousands of neurons in the brain die all the time.Ý Unlike other cells in the body, these cells are not replaced.Ý By the time a person reaches 80, the cumulative loss of neurons can be significant enough to effect cognitive and motor skill processes.
The progression of Alzheimerís varies from person to person, but mental skills are usually the first to be lost.Ý Loss of memory and language skills; then physical capabilities, motor skills, are lost.Ý Loss of previously learned movements.Ý Along with loss of mental and motor skills, behavior and personalities often dramatically change.Ý
In the end, the patient can do nothing for him/herself, cannot communicate either verbally or physically, does not recognize or know family members, and does not recognize what is seen.
As the progression of Alzheimerís and dementia varies from person to person, so do the early symptoms.Ý There are some general trigger signs to be aware of, take note of, and then decide when a person should be taken to a doctor for evaluation.
Early signs include:
As Alzheimerís progresses, behavioral changes may become more apparent. They very often include:
There is no known cure for Alzheimerís or course of medical treatment that reverses neuron (cell) destruction or plaque formation or restores intellectual capacity or motor skills.
AÝ standard diagnostic procedureÝ --Ý a blood or urine testÝ --Ý has yet to be developed.Ý Medical and clinical evaluation is believed to give an accurate diagnosis most of the time, but an autopsy is the only way of confirming the disease.
Some of the mild symptoms of Alzheimerís, which may be the same as other dementia, such as depression, aggression, anxiety, agitation and insomnia were at first thought to be helped by drugs.Ý Researchers hoped such drugs would slow down the deterioration of brain cells and mental and motor skills loss.Ý However, to date there has been no drug or therapy discovered to abort the progression.
What is known is that low levels of certain chemicals, especially acetylcholine, can impact memory capabilities.Ý Others, antioxidants and calcium channel blockers, can help slow down neuron (cell) death.
Hence research to date has focused on developing drugs that may help
ěThere is no way of reversing cell death.Ý The only medical treatment now available is the hope we can slow down the illnessesí progression.Ý There is no magic medication,î says Joshua Shua-Haim., M.D., FACP , Medical Chief of Meridian Institute for Aging in Manchester Township, New Jersey and Associate Professor,Ý Department of Medicine at UMDNJ in Somerset, New Jersey.
According to Shua-Haim, who specializes in geriatrics, dementia and Alzheimerís,Ý one drug has been approved here which was thought to help slow down the progression, and that has some serious side effects, Shua-Haim says.
Research to date has not helped to improve a patientís situation, ěbut if there is no change, no further deterioration,î Shua-Haim says, ěthat is very good.î
Dr. Jeffrey T. Apter, President of Princeton (NJ) Biomedical Research, is a psychiatrist and has been involved with researching new drugs and psychopharmacology for a number of years.Ý He is chairman of the Scientific Advisory Committee of the Central New Jersey Alzheimerís Association.
ěWhile there is no cure,î says Apter, ěunderstanding of its pathology is improving.Ý Rapid developments in the field of molecular genetics have yielded insights into the possible genetic causes.Ý While the underlying cause has not yet been determined, some biochemical characteristics are now understood.î
Dr. Jeffrey Mattes, Director of the Psychopharmacology Research Association of Princeton,NJ, is also a psychiatrist and chairman of the Psychopharmacology Committee of the New Jersey Psychiatric Association.Ý
Mattes notes that there is no known way to prevent Alzheimerís.Ý Several drugs that seemed promising in tests with animals havenít proven out with humans.Ý While the three prime drugs available may help some patients somewhat, Apter says, ěthe help is negligible and often we donít see any positive effect.Ý There does not seem to be any good animal model for Alzheimerís.î
With all of the drugs now being tested, Shua-Haim says it is even more important than before to identify Alzheimerís in the very early stages.Ý Some of the new drugs work better in the early stages, he says.Ý However, the disease, which Shua-Haim calls a syndrome, is very difficult to identify in the beginning, because the patient tends to hide deficiencies and deny anything is wrong.
Advice to Sandwich Generationers:Ý If one parent tells you that your other parent is doing ěstrangeî things or is behaving out of character, ělistenî,ÝÝ advises Shua-Haim.Ý ěEarly stage Alzheimerís patients are marvelous at hiding their problems and deficiencies to other family members.Ý But a spouse who is there every day can spot changes.Ý Donít let the well spouse bear the burden by not listening to him or her.î
Dementia, including Alzheimerís, is the largest illness epidemic and most trying chronic illness facing society today.Ý It dwarfs cancer, AIDS, and heart disease as far as the burdens of care are concerned.
There are currently an estimated 4 million Americans of all ages with Alzheimerís.Ý 100,000 die each year.Ý Because there is no medical treatment to reverse or cure Alzheimerís, the only ětreatmentî is human; how the patient is cared for.
Kathy Lloyd, MSN, RNC, a geriatric nurse practitioner, advises family members to learn as much as possible about the disease, to understand its progression, and what can be expected.Ý ěRemember there is an organic basis to the disease.Ý The person is not deliberately ëdoing things.íÝ The periods when mental capacity ëare iní or ëgo outí are not controllable.Ý The patient does not act out to ëget backí at someone else.Ý The patient is not responsible for his/her ability to or not to do thingsÝ --Ý from dressing, to eating, to walking.î
Maury Mangan, BSN, RN, also a geriatric nurse adds ěUnderstanding the disease helps the caregiver reduce her total out of control feelings.Ý Understanding can help the Sandwich Generationer better accept role reversal.î
Both Lloyd and Mangan admit itís hard for a caregiver, whether a spouse or Sandwich Generationer, to come to terms with the disease.Ý ěDo what you can comfortably,îÝ Mangan says, ěand know when youíve reached your limit.Ý Impose parameters of what you can and cannot do yourself.Ý A caregiver cannot be all things to all people.î
Lloyd advises, ěYou need to give yourself permission to care for yourself.Ý Itís ok.î
The progressive dementia and demands created by Alzheimerís causes the caregiver to experience a range of emotions.Ý ěDenial is the earliest, strongest emotion because the more we accept reality, the more we fear for ourselves, our future and our ability to cope with it all,î according to the Alzheimerís Associationís brochure.
ěOnce the caregiver takes on the challenge of caring for the individual and assumes the daunting responsibility of managing his or her affairs, denial is often followed by feelings of helplessness and of being trapped, tied-down, and eventually burned out.
ěAs the disease progresses, it is not uncommon for the caregiver to feel angry, frustrated, or even embarrassed by the person with Alzheimerís.Ý The emotional stress can also cause the caregiver to experience depression, low self-esteem.Ý Feelings of tension may also develop between the caregiver and other family members if the caregiver feels a lack of support.Ý Any combination of these emotions can result in feelings of guilt.
ěThe emotional strain of caring for someone with Alzheimerís often manifests itself in the development of physical complaints experienced by the caregiver.Ý These may range from fatigue and stomach problems to headaches and insomnia.Ý Many caregivers fail to make the connection between the emotional strain they are experiencing and the subsequent development of physiological symptoms.î
Dr. Jeffrey Mattes, Director of the Psychopharmacology Committee of the New Jersey Psychiatric Association, agrees.Ý He says that all Alzheimerís and dementia caregivers reach the point when they are overwhelmed with all that needs to be done, all the time.Ý ěMost caregivers should be nominated for sainthood.
Dr. Michele Elkins, Director of Geriatric Health Care Services at St. Barnabas Medical Center, Livingston, NJ, says that often caregivers put too much pressure on themselves by expecting to be able to do everything ěperfectly.îÝ Then there are the pressures from the patient.
ěWhile many caregivers feel they must do it all and feel they are betraying the parent if they canít, there is a point when the Alzheimerís patient is better off in a nursing home,î Elkins believes.
ěSandwich Generationers have their own lives, spouse, children and work.Ý They have to adjust priorities or the whole family suffers.Ý The caregiver is exhausted, and marriage problems develop,î she says.Ý Also, while it is commendable to keep a person in the community, she warns that too much medication may be used in order to control erratic behavior.
ěSNFs today rely less on drugs.Ý A patient is evaluated from functional, cognitive and behavioral points of view,î Elkins says.
While many Sandwich Generationers feel guilty about nursing home placement, Elkins says Alzheimerís patients, not really knowing time and place and family member relationships, quickly get into a new routine and become comfortable in their new environment.Ý Maintaining a calm, well structured environment helps a patient retain his/her dignity.Ý ěThose in the SNF become their ěnewî family, and the real family can get back to its own life,î she says.
At what point should an Alzheimerís person be placed in a nursing home?
Elkins notes that each case is different.Ý ěBut you have to look at the level of care and stress burden on the family and the help available from the community. When the caregiver has no life for herself or when safety is involved, itís time to let go.î
WHY THE ANGER?
Note:Ý It is not The Sandwich Generationís policy to recommend a specific book or pass judgment on it.Ý We make an exception here, as Naomi Feilís book ěThe Validation Breakthroughî provides exceptional down to earth advice on how to handle a demented person and avoid angry confrontations.Ý Her explanations provide new insight to the age-old question ěWhy do they do this.....?Ý And her ěDoísî and ěDonítsî advice is marvelous.
Many people, regardless of age, resent things that may have happened years before, over which they might not have had any control or if they might have, did not change things.Ý They carry inside themselves a great deal of deep anger.
As a person moves into dementia, whether Alzheimerís or another kind, this anger may be vented for the first time.Ý The recipient is usually the caregiver and/or other close family member of friend.
Manifestations exhibited vary, but range from verbal abuse to physical hitting out.Ý Naomi Feil in her book, ěThe Validation Breakthrough,î explains the ěwhy.î
Caregivers face a new breed of very old people who must resolve certain issues before death.Ý They need to return to the past in order to resolve issues they never resolved during their younger years, she says.
Angry elders are usually ěloaded with a back pack of unexpressed emotions and must unload these emotions before they die.Ý The very old try to tie up the emotional loose threads of their lives before death,î she says.
Feil points out that people who fulfill their life tasks at each stage achieve integrity in later life.Ý They are able to accept new roles; grieve over deaths, failures and unfulfilled dreams.Ý When there are unresolved life tasks, ěpeople carry heavy emotional burdens that they struggle to resolve in old age,î she says.
Those who were able to express their emotions throughout their lives, do not vent their anger inappropriately in old age, she says.
If they have unresolved issues still to deal with, ěthey must express the emotions they have buried for a life time.îÝ They blame, they accuse, they whine, they complain, Feil says.Ý
If a person never had to face simultaneous losses and did not develop the skills for coping, the losses pile up, she says.Ý Often in old age this comes out as blame to everyone else of wrong doing.Ý ěThey use people in the present time to express emotions they have not expressed in the past.î
Feil also notes that in the last stages of dementia when people lose the ability to communicate through speech, ěthey blend sounds to express their emotions,î she explains.Ý Despite disorientation and the inability to verbalize, people ěkeep the universal human need to belong, to find identity, and to express themselves.
Acceptance and respect regardless of mental and physical conditions help caregivers of Alzheimerís patients maintain an even balance every day and a tranquil environment for all.
The acceptance element is critical in Alzheimerís situations.Ý Respect, regardless of condition, is the essence of Naomi Feilís Validation theory.
In her book ěThe Validation Breakthrough,î Feil explains that her theories are ěbased on the notion that there is a reason behind all behavior.Ý Understanding why elders behave the way they do, whatÝ their lifeís experiences were and accepting the way they behave is the key to validating them.î
The value of validating is to ěpromote a sense of overall well being.Ý It is not tied to particular behaviors... Validation recognizes that people go through different stages of development (and deterioration), and that their behavior may reflect unresolved tasks (and feelings) from an earlier stage.î
The validating caregiver, Feil says, accepts the physical deterioration of the person, ěenters the personís world, and becomes a nurturing authority.Ý The elder feels safe and begins to communicate with or without words.î
Feil says the caregiver must ěbe able to put aside her own judgments and expectations of behavior, and learn to be sensitive to the logic behind the disorientation of very old people.î
By using Feilís techniques, the anxiety levels of both the elder and the caregiver can be substantially reduced.Ý And using her techniques can also allow an Alzheimerís or severely demented person at least to get through each day more calmly.
ěRespect the reality of the old person, which may or may not be in the present,î says Feil.Ý If the person is verbally or physically abusive, know that it may not be personal against the abused, she says.Ý But ěyou have to acknowledge your hurt, put it in the closet, close the door, and listen with empathy.î
Acknowledge that there are things in the reality of the Alzheimerís patient that are not really reality.Ý In many ways this is the key to smoother caregiving.
Do not try to force ěreality,î advises Feil.Ý ěDonít argue the facts.îÝ The demented person will only get upset if he/she feels that the listener does not believe what he says, Feil notes.Ý And the severely demented do not have the capacity to understand reality, no matter how much the caregiver tries to instill it.Ý Trying to force reality only makes a demented person more anxious and hostile, makes that person angrier and behavior more uncontrollable.
Do not, Feil advises
Not Everything is Alzheimerís
Not all forms of dementia are Alzheimerís. ÝDementia in general is the loss of intellectual functions of sufficient severity to interfere with a personís daily functioning.
Outside of Alzheimerís dementia is not a disease in itself but rather a group of symptoms that may accompany certain other diseases or physical conditions.
Symptoms are similar:Ý confusion, memory loss, personality change, impaired judgment and reasoning ability.
There are more than 100 causes of dementia, and in many cases the dementia is ěreversible.î
Dementia can be caused by strokes, heart attacks, depression, thyroid problems, alcoholism, nutritional deficiencies, medication abuse and more.
Those that are the result of depression, medication abuse, thyroid problems and nutritional deficiencies can often be treated with very favorable results.Ý Recent research is now indicating that vascular dementia, resulting from a change in blood flow to the brain, may be helped by treating the underlying problems (from stroke, high blood pressure).Ý Thus, further loss of brain function may be controlled.
Therefore, an early medical and neurological diagnosis is very important
I ěSELFî: WHAT TO DO
Caregivers of Alzheimerís patients are often called ěthe second victim.î
More than 80% suffer from high levels of stress-induced psychological symptoms such as guilt, sleeplessness and feelings of hopelessness, and nearly half are clinically depressed.Ý In many cases, the stress induced repercussions are so severe that the caregiver needs to be hospitalized.
Often caregivers, whether of an Alzheimerís patient or other elderly parent, donít recognize their own needs, fail to do anything about them, or simply donít know where to turn for help, according to the Alzheimerís Association (AA).
Women need to recognize the increased stress that comes with caring for a loved one can destroy their own health unless they get help, according to AA.
Advice from AA to all caregivers:
|Chracterisitc Age Function Deficit||Approx. Function||Psychological Features|
|Disoriented to time
Clear cut memory and cognitive deficit
|Disoriented to place.
Decline in ADL:(Activities of Daily Living)
|8 years old||Denial
Decline in ADL:(Activities of Daily Living)
|5-7 years old||Agitation
Reversed sleep patterns
|Does not remember name of spouse & child
Require assistance dressing
Require assistance bathing
Require assistance toileting
Urinary and fecal incontinent
|Dramaric Deterioration in:
- Speech activity
- Body, posture/head
LEGAL ISSUES OF DEMENTIA
Many families find it hard to talk openly about money and sensitive issues, even at the best of times.Ý A family crisis, like discovering a loved one is suffering from Alzheimerís, tends to make matters worse.
Since early-stage Alzheimerís patients are still able to understandÝ and participate in the decisions that must be made, they can usually help get legal and financial records together and express their wishes.
It is important to do everything possible to assume control of financial and legal affairs early on.Ý This can be very painful; but once an Alzheimerís patient regresses there is a point where he/she cannot participate in making decisions.Ý Then the Sandwich Generationer has to go to court to obtain guardianship, and this is costly.
Be sure to see a lawyer as soon as possible; to draw up Durable Power of Attorney; Living Will and Testamentary Will documents.
The above advice is given by the American Health Assistance Foundation.Ý Its message has often been repeated in The Sandwich Generation.
This material is copyrighted by Carol Abaya Associates and cannot be reproduced in any manner, print, or electronically.