Caregiver Survival 101:
Strategies to Manage Problematic Behaviors Presented in Individuals with Dementia
By Lisa Byrd, PhD, FNP-BC, GNP-BC, Gerontologist
Published by:
PESI HealthCare | PHC Publishing Group
Copyright 2011 PESI HealthCare
Smashwords Edition
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Preface
Yelling, throwing, hitting, incessant questioning, staying up all night (and all day too), crying, wandering, restless behaviors – having to contend with any of these behaviors on a daily basis makes it difficult for any caregiver to cope – especially if they are not able to reason with the person who is acting this way. It is impossible to rationalize with an irrational person – caregivers must learn to accept that fact. The key to diminishing the occurrence of, as well as calm, problematic behaviors in individuals with a diagnosis of dementia is to develop an understanding of the problem. And problems can be more tolerable if caregivers learn strategies to manage the behaviors and the person. Enhancing the quality of life for these individuals, while maintaining one’s sanity, is the primary goal of care.
Disruptive behaviors are common among individuals who are suffering from dementia, and these behaviors can be distressing to anyone who must deal with these problems. Dementia is NOT a normal part of the aging process but is a problem which affects a significant number of elders. There are marked psychiatric and behavioral problems which occur in individuals who have a weak perception of reality and who experience memory loss as well as delusions or hallucinations. Everyday tasks and activities become progressively more difficult as a dementia affects an individual’s ability to think, remember, and function independently. The day-today activities of communicating, driving, eating, bathing, dressing, and toileting become a challenge for individuals with cognitive impairment caused by any type of dementia, including Alzheimer’s disease.
No two individuals with a diagnosis of dementia will exhibit the same behaviors nor will every individual respond the same to similar strategies for management. Every person with dementia will have their own unique presentation, but there are some common behaviors which have been observed in many individuals with dementia. Deciding what actions constitute a behavioral problem is highly subjective and the tolerability of behaviors – what actions caregivers can tolerate – depends partly on a person’s living arrangements, with safety being the highest priority. Caregivers will decide what behaviors are acceptable and what behaviors require intervention. For example, an individual may wander off and become lost: wandering may be tolerable if a person lives in a safe environment – at home with locks or alarms on all doors and gates to prevent elopement or wandering off; however, if the person lives in a nursing home or hospital, wandering may be less tolerated because it disturbs other patients, puts an individual at risk for injury to self or from other patients, or interferes with the operation of the institution. Many behaviors such as wandering, repeatedly questioning, and being uncooperative are better tolerated during the day and are more difficult to manage in the afternoon and evening hours. These types of behaviors have been observed at this time of day, when individuals are less likely to be distracted and calmed. It is poorly understood whether this type of behavior, known as ‘sundowning’ (an exacerbation of disruptive behaviors at sundown or early evening), represents decreased tolerance by caregivers, or is a true exacerbation of behaviors and less response to redirection or other management techniques. In this book, there will be discussions about possible reasons why these behaviors occur and several suggestions for strategies to help caregivers manage problematic behaviors and calm upset individuals. But caregivers must remember that no technique will work every time and sometimes nothing will help. The information presented in the following pages is an attempt to provide caregivers, clinicians and families with the necessary knowledge to provide appropriate care for individuals with dementia, based on scientific research and common practice.
The discussion will begin with an introduction to the problems and the common forms of dementia affecting behaviors, including their presentations. Also discussed will be ways to develop a plan of care, incorporating a holistic approach to management to include behavioral, environmental, and pharmacological strategies.
The author will present real life examples of geriatric behaviors and management strategies, both what has worked and what has not, based on over 25 years working in healthcare, over 13 years working as a Nurse Practitioner caring for elders in Nursing Homes, and from personal experience as a daughter caring for a mother who provided many examples of problematic behaviors. The strategies are based on research and best practices, as well as the author’s professional and personal experiences. The strategies presented in this book are peppered with a belief that care for vulnerable individuals with dementia is an obligation for care to a person as an individual who is owed our respect and compassion.
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Acknowledgements
‘Caregiver Survival Guide 101’ is a work meant to offer information, advice, and help for those who are in a place where I once was. I have ‘been there, done that’ and that is what I wish to share – my professional and personal experience. Writing this book helped me remember and grieve, as well as memorialize an outstanding mother.
I would like to express my gratitude to the many people who saw me through this book; to all those who provided support, talked things over, read, wrote, offered comments, proofreading, and design.
Above all I want to thank my husband, Ricky, my children – Josh and Sarah, my sister – Cathy Myers, and my niece – Brookleigh Allen, who were with me through Mom’s life, illness, and death. They also lived through Mom’s decline and played an active role in her care – we worked to provide support as well as encouragement to each other. It was a long and difficult journey for all.
I would like to thank PESI HealthCare for enabling me to publish this book – they had the belief that I could write a book worthy of helping others. I would also like to thank Steve Isaacson, Yvonne Kuter, and Heidi Strosahl for the arduous process of editing and molding this into a publishable work.
Thanks to Dr. Virginia Lee Cora, who offered her words of wisdom as well as provided support and encouragement during Mom’s illness and in my efforts to write this book.
Last and not least: I beg forgiveness of anyone who has been with me over the course of the years and whose names I have failed to mention.
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Table of Contents
Chapter
1
Geriatric Behaviors in Individuals Suffering from Dementias – An
Overview and Meet my Mom
In
this chapter, there will be a brief introduction to the problems
presented by individuals with a diagnosis of dementia, reasons why
this problem will be epidemic as the elderly population explodes, and
a discussion about reversible causes of confusion in elders which are
not caused by dementia. The story of my Mom will begin here.
Chapter
2 Normal Aging, Depression,
Dementia, & Delirium
This
chapter covers a presentation of normal changes occurring in all
older adults as well as diseases occurring in elders that affect
memory and behavior. There will be a brief discussion of the
pathophysiology, presentations, and ways to differentiate depression,
dementia, and delirium in elders. This will assist in differentiating
between the various causes of confusion in elders. Steps to
appropriately diagnosing the problem will be discussed as the key to
designing an appropriate plan of care.
Chapter
3
Management of Alzheimer’s disease
In this chapter
will be a presentation on the stages of Alzheimer’s disease: early,
middle, late, and terminal stage, including the physical as well as
psychiatric changes and problems occurring. Current treatment plans
to manage this disorder will be discussed including common diagnostic
testing and management strategies to include behavioral,
environmental, and pharmacological interventions.
Chapter
4
Other Dementias: Lewy Body, Pick’s Disease, Parkinson’s Disease,
and Other Neurodegenerative Disorders
This chapter
presents a discussion of the various causes of dementia, including
the physical as well as psychiatric changes and problems occurring.
Current treatment plans to manage these disorders will be discussed
including common diagnostic testing and management strategies
(behavioral, environmental, and pharmacological).
Chapter
5
Driving with Dementia, OH MY!
We all know it
happens; individuals with dementia are often still driving in the
early stage of their disease. Families and other caregivers worry
about safety – both of the individual as well as the community in
which they drive. This chapter will provide some insight into how
dementia, as well as normal aging changes, affect driving abilities
in elders. There will be a discussion of how driving is often viewed
as a form of self-reliance and independence and how cessation of
driving impacts an individual’s life. Strategies will be presented
to assist caregivers in stopping individuals from driving when it is
no longer appropriate or safe.
Chapter
6
Sundowning, Wandering, and Aggressive Behaviors (Physical Aggression
& Sexually Inappropriate Behaviors)
This chapter
will include a brief discussion of ‘Sundowning’ and why it can
occur in elders. Common problematic behaviors reported in individuals
suffering from dementia will be presented including examples of
triggers which may be causing the behavior to occur. Strategies to
diminish the occurrence of behaviors as well as ways to manage
behaviors will be reviewed, a brief discussion on why orientation
theory is ‘out-the-door’, and the importance of validation and
redirection – many examples of techniques will be reviewed
including ways to decrease the bathing battle.
Chapter
7
Eating Problems in Elders with Dementia
Eating is
the last activity of daily living lost by an individual suffering
from dementia. There are many physical as well as psychiatric issues
affecting an individual’s ability to eat. This chapter will review
of the complexity of the eating process and present strategies to
enhance and improve the nutritional status of individuals with a
diagnosis of dementia.
Chapter
8
Sleepless Nights or UP ALL
NIGHT AND ENERGY FROM NO-WHERE!
Individuals with
dementia may experience a surge of energy in the night-time hours
which can be problematic when these individuals are at great risk for
falls and injury. There are many reasons why individuals suffering
from dementia awaken through the night and there are many problems
caused by a person not obtaining an appropriate amount of sleep. This
chapter will discuss the biological processes occurring during sleep,
the consequences of not getting an adequate amount of REM sleep,
triggers which impair an older person’s ability to sleep, and ways
to increase length/improve the quality of restful sleep in confused
individuals. A brief discussion of Dream-Directed Behaviors will also
be presented.
Chapter
9
Family Issues
Family members experience many
different reactions to a loved one’s diagnosis of dementia.
Emotions, family dynamics, and family members’ levels of
understanding affect acceptance of the disease and impact family
reactions. Difficult decisions will be made. Family conflict can
occur. Feelings of anxiety, frustration, depression, and loss of
control are normal and can create problems for caregivers. This
chapter will discuss the emotional issues occurring when a family
member receives a diagnosis of dementia, role changes which occur,
family conflict, and strategies to manage family conflict.
Chapter
10
Caregiver Stress and Burnout
Caregivers of
individuals with dementia often experience depression, anxiety,
loneliness, isolation, and self-neglect. These issues can lead to
stress and burn-out, even resulting in the caregiver dying before the
one for whom they provide care. This chapter will present the signs
and symptoms of caregiver stress and burnout as well as ways to
manage and survival tips.
Chapter
11
Ethics of Care
Alzheimer’s disease and other
dementias have a physiological cause, are progressive disorders, and
are terminal diseases. Individuals who have these diseases often are
not rational and many times are not allowed to choose the direction
of their care – someone else makes the decisions for them because
they often cannot think clearly and logically. There are many ethical
issues to consider and this chapter discusses some of the issues
surrounding truth telling and autonomy of cognitively impaired
individuals. There will also be a brief discussion about justice –
offering similar care to all no matter their financial status, race,
religion, or cognitive ability.
Chapter
12
Caregiver Survival 101
Discussed in this chapter
will be the legal issues which must be addressed in care of
individuals with dementia, including assessing the decision-making
ability of confused individuals, advanced directives,
power-of-attorney – both medical and legal, guardianship, and
important documents to locate. Also discussed will be the stages of
dementia, common behaviors associated in the different stages, common
triggers for behaviors, and strategies to managing the problems AND
SURVIVAL TIPS.
Chapter
13
Late Stage or Terminal Dementia
In
the final stages of a dementia (including Alzheimer’s disease),
there is a shift of care priorities and focus is on comfort care.
Caregivers may experience grieving over the loss of the person even
before their physical death. The complex and often disorderly
progression of this terminal disease can make the journey to the
person’s final days difficult as the person reaches the stage where
he/she requires complete care 24 hours a day, 7 days a week. Simple
acts of daily care, such as bathing, feeding, turning, and cleaning
the person; contrast with complex endof-life decisions, such as
whether to institute or continue life-prolonging medical care; and
profound bereavement. Caregivers can learn to anticipate, remember,
and reconnect with the person, which may ease the journey through
care and grief.
Chapter
14
The End of Mom’s Story
A conclusion to our long
journey will be shared and lessons learned from the experience.
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Appendix A: Medications commonly used to treat problematic behaviors associated with dementia
Appendix
B: Neuropsychiatric
Testing
Definitions
& Terms
About
The Author
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Geriatric Behaviors in Individuals Suffering from Dementias – An Overview and Meet my Mom
Geriatric
Behaviors in Individuals Suffering from Dementias – An Overview and
Meet my Mom
In this chapter, there will be a brief introduction to
the problems presented by individuals with a diagnosis of dementia,
reasons why this problem will be epidemic as the elderly population
explodes, and a discussion about reversible causes of confusion in
elders which are not caused by dementia. The story of my Mom will
begin here.
Introduction
Caring for a person whose perception of reality is altered due to a disease which causes dementia can be overwhelming. Each day brings different behaviors, new demands and may present opportunities as the caregiver copes with a person’s changing levels of ability. Confusion and disorientation are common occurrences for individuals who have a diagnosis of dementia. This can make it increasingly difficult for the person to maintain a normal life due to the behavioral issues presented. Memory impairment and delusional beliefs are common in elders with dementia and may result in inappropriate behaviors in social situations or even at home resulting in difficult situations. Psychotic behaviors can also present in individuals with dementia which include hallucinations – usually visual, delusions, and delusional misidentifications.
*
Hallucinations are false sensory perceptions that are not merely
distortions or misinterpretations
* Delusions are beliefs that are
untrue events but the events are not out of context with a person’s
social and cultural background
* Delusional misidentification may
result from a combined decline in visual function and recent memory
problems: individuals may suspect that a family member is an
impostor, believe that strangers are living in their home, or fail to
recognize their own reflection in a mirror
* Other troubling
issues can include non-psychotic behaviors associated with dementia:
agitation, wandering, sexual disinhibition, and aggression
Individuals who display physical or verbal aggression, which is associated with delusional misidentification, usually require a treatment plan which uses a combination of pharmacologic and non-pharmacologic treatments (Rayner et al, 2006). Abrupt changes in behavior may pose a greater challenge to management than cognitive decline for individuals with dementia and their caregivers. The nature and frequency of problematic behaviors varies over the course of an illness, but in most individuals, these symptoms occur more often in the later stages of disease (Rayner et al, 2006). Management of individuals with a diagnosis of dementia requires a comprehensive approach and incorporating a combination of strategies. It begins with an accurate assessment of symptoms, awareness of the environment in which symptoms occur, and identification of factors which precipitate symptoms as well as how the symptoms affect individuals and their caregivers. Nonpharmacologic interventions are the foundation of care and include creating a simplistic and safe environment, a predictable routine, counseling for caregivers about the unintentional nature of psychotic symptoms, and offering strategies to manage as well as cope with troubling behaviors. Approaches for an individual suffering from dementia involve a structured environment, behavior modification, appropriate use of sensory intervention, and maintenance of routines such as providing meals, exercise, and sleep on a schedule. Pharmacologic treatments should be governed by a “start low, go slow” philosophy: a mono-sequential approach to prescribing – adding a single agent, titrating until the targeted behavior is reduced, side effects become intolerable, or the maximal dosage is achieved (Rayner et al, 2006). Goals of managing the care of individuals suffering from dementia and the behavioral issues which occur should include symptom reduction and preservation of quality of life.
Introduction to the Problem: Explosion of the Older Population
As of the year 2000, 16.3% of the entire US population was over 60 years of age, a 12% increase in this demographic group since 1990 (ASCLS, 2003). An increase in the geriatric population has been projected. In 2010 the elderly population had grown to 39 million, an increase of 17% since 2000. It is estimated there will be a rapid rise in numbers of elders between the years 20102030, increasing the elderly population to 69 million due to an aging baby boomer cohort. Elders are expected to increase by 75%. And between the years 2030-2050, the growth rate of elders is projected to increase another 14%, bringing the geriatric population to 79 million.
Aging & Characteristics of the Older Population
Aging is a process – it is universal, progressive, and unavoidable, occurring in all living individuals. Everyone will age as time marches on but all will age a bit differently. Aging is not a disease; it is the cumulative changes that occur in an individual over time. It is a series of biological, psychological, and spiritual changes (Cora, 2003).
The elderly population is currently healthier and living longer than generations before them. Most elders are able to live independently and manage their everyday activities but there are some conditions which can cause psychiatric problems in elders including dementia and depression. Normal aging does not cause a person to have problems with memory. A full medical work-up should be conducted on any older person who has problems with memory, has a personality change, or exhibits problematic behaviors in order to obtain an accurate diagnosis, to rule out treatable problems (which if appropriately treated may reverse the confusion) and develop an appropriate plan of care. The goal is to optimize an individual’s quality of life and maintain, as well as encourage, as much independence as is possible.
The geriatric population is exploding in numbers and statistics report there are a number of medical issues which have not been as apparent as in previous years. Although the older population is much healthier than their parents, they are physically healthy but there is currently an increase in the number of individuals with some form of confusion. Confusion can be caused by dementia which often presents challenges in care. BUT not all older people will develop dementia. It is NOT a normal part of the aging process. Dementia is physical disease just like any other medical condition, such as hypertension and diabetes, but its symptoms are often exhibited as psychiatric or behavioral problems. (Byrd, 2003).
Of all the causes of dementia, Alzheimer’s disease is the most common cause of dementia in the elderly population. As of 2010, only 10% of the population over the age of 65 had a diagnosis of Alzheimer’s disease, meaning 90% did not. Healthcare providers, as well as society, must not assume an older person is destined to be confused or ‘senile’ as it was once termed, because this is stereotyping and this is not appropriate (and not true). Any older person who presents with confusion must be evaluated to determine if there is a cause of the confusion which can be treated and the problem reversed so the confusion will go away. Common reversible causes of confusion include depression, dehydration, infections, and medications, as well as other medical disorders.
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Chapter 1 References
ASCLS (2003) Document: Role of the Clinical Laboratory in Response to an Expanding Geriatric Population. Position Paper. Retrieved May21, 2010 from http://www.ascls.org/ position/ExpandingGeriatric.asp
Byrd, L. (2003). Terminal dementia in the elderly: awareness leads to more appropriate care. Advance for Nurse Practitioners. 11(9):65-72.
Rayner, A., O’Brien, J., & Schoenbachler, B. (2006). Behavior Disorders of Dementia: Recognition and Treatment. Journal of the American Family Physician. 73(4):647-652.
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Meet Mom
My Mother was one of the most remarkable people I ever knew. She was an Emergency Room Nurse who worked the night shift. She was a single parent of two children and she was a very strong willed individual. She worked hard her entire life and was a very proud woman. She cared for almost everyone around her including her own mother until the day she passed away.
She was very independent, caring for her household, managing her own affairs, driving, and generally living her own life. We first realized there was a problem when her house was being foreclosed upon. Mom had always been a very savvy business woman but she had come to the conclusion that she was unable to pay all of her bills so she didn’t pay any of them and decided to go to the casinos on the river instead. The problem became apparent when I discovered her house was in foreclosure. Now Mom had a retirement income, her car was paid off, and she should have been able to live on her income.
I lived on the other side of town where she lived, so I was always near but I had no clue there was a problem up until this point. When this realization came to light, we began to explore the problem. We managed to sell the house (at a bit of a loss – it was more run down than we realized) and moved Mom to a house 5 minutes away so I could help her with managing her financial affairs and help out if needed. She did well for a while but little things she said and did began to make us take notice and begin to worry. Children never want to think there is anything wrong with their parents and attribute a lot of the idiosyncrasy as normal part of aging – becoming a little more forgetful (all her friends were a bit forgetful too), getting lost going to the grocery store (after all she was in a different city), forgetting the main item she went to the store to get (heck, I do that), or staying up all night (after all she did work night shift most of her adult life). We just put it off as getting older until the behaviors became more blatant.
The behaviors began to worsen and she became irritable when we asked her why she did-or didn’t do-the things she did. She would change the subject, laugh it off, or start yelling and arguing when we asked her to explain certain things. Sometimes she could carry on as if nothing was wrong but other times she would do things that began to signal there was a problem – eating more junk food because it was easier but discovering she was unable to cook because she couldn’t follow a recipe correctly; calling several times to ask me to bring her something from the store (not remembering she had already asked me to pick it up); and complaining about how rude and impatient the drivers were in the new town she lived – we will discuss the driving issues in a later chapter (this was really an issue). Nothing very indicative of the problem, just hints something just wasn’t right.
Our story begins…
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Normal Aging, Depression, Dementia, & Delirium
This chapter covers a presentation of normal changes occurring in all older adults as well as diseases occurring in elders that affect memory and behavior. There will be a brief discussion of the pathophysiology, presentations, and ways to differentiate depression, dementia, and delirium in elders. This will assist in differentiating between the various causes of confusion in elders. Steps to appropriately diagnosing the problem will be discussed as the key to designing an appropriate plan of care.
Introduction
After the age of 20, people begin to lose brain cells a few at a time and a person’s body starts to make less of the chemicals the brain cells need to work. As individuals age, thinking processes slow slightly and these chemical changes affect memory to some degree. Aging will affect one’s memory by changing the way the brain stores information and making it harder for older adults to recall stored information. But short-term memories, as well as remote memories, are not usually affected by aging (FamilyDoctor, 2010).
After the age of 60, individuals experience some degree of neuron loss in their brains causing the size and weight of the brain to diminish slightly. (Alzheimer’s disease Research, 2010) But this does not affect the ability of the brain to think, to reason, and to store new memories unless there is a pathological condition causing a problem. The quickness of thinking may slow as one ages, but the ability to think does not change. Most older individuals are able to think, function, live independently, and manage everyday activities throughout their lives.
It is not normal for an older person to be confused unless there is a cause. Some of the causes include illness and medications. There are some conditions which can cause mental health problems in aging individuals, for example dementia (including dementia of Alzheimer’s disease) and depression. The main goal of care for elders experiencing problems in their ability to think and remember is to determine the cause of the confusion presenting in order to determine if there is a causative factor which can be addressed and the confusion be reversed. Any older person who has problems with memory should undergo a full medical work-up to rule out treatable causes, obtain an accurate diagnosis, and an appropriate plan of care created to meet each person’s unique needs.
Causes of Memory Loss in Older Individuals
Head Trauma
Nutritional deficiencies (including anemia)
Neurodegenerative diseases
Thyroid disease
Cardiac Arrhythmias (heart-rate abnormalities)
Seizures
Strokes or Transient Ischemic Attacks (TIAs)
Electroconvulsive Therapy
Infections/Illness
* Urinary Tract Infections
* Upper Respiratory Infections
Dehydration
Depression
Medications
*Benzodiazepines, Barbituates, etc.
Alcohol Abuse
Dementia (Alzheimer’s disease & other dementias)
Normal Brain Pathophysiology
The quickness of thinking normally slows as an individual ages but a person’s thinking processes are not generally affected. It may take longer to respond but the ability to respond is still intact in most elders. There is some degree of neuron loss in an aging brain, mainly in the brain and spinal cord, and most pronounced in cerebral cortex (Medline Plus, 2010). Neuronal dendrites atrophy with aging which causes an impairment of the synapses and changes in transmission by the chemical neurotransmitters. Growing older means there will be some atrophy within a person’s brain and some changes within the workings of the brain but these changes generally do not affect the brain’s functioning – including the ability to reason and remember. A simplistic view of memory storage is to compare memory storage to an electrical cord that transmits electricity – a switch is turned on, an electric charge runs down a cord, electricity is conducted the length of the cord, and electrical current reaches the object and activates the object to work; in a person – an individual sees an event, the event or memory is transmitted to the neuron – neurons are lined up end to end but not touching, the memory or impulse is conducted through the neuron, the end of the neuron (the dendrite) is activated to send a neurotransmitter (or chemical marker) to the next neuron which activates the next neuron to conduct the signal, and the action is repeated in sequence until the memory makes it to the brain’s filing cabinet and stores the memory.
Figure 1: Memory Storage
Most medical treatments are aimed at manipulating one or more of the chemicals in the brain to improve the brain’s ability to think, reason, remember, and act appropriately. Mood is also one of the problem areas for elders who are suffering from confusion and can impact their quality of life as well as ability to think clearly. The main chemicals within the brain which play roles in mentation, ability to think, mood, and behavior include: dopamine, norepinepherine, serotonin, acetylcholine, glutamate, and possibly somatostatin and corticotrophin-releasing factors (Alzheimer’s disease Research, 2010).
Figure 2: Chemicals within the Brain & Dementia
Discussed in the next chapter will be the ways in which medications are used to treat Alzheimer’s disease and other dementias as well as medications used to improve quality of life. Developing an appropriate plan of care begins with an accurate evaluation of the problem and diagnosis while ruling out treatable problems.
Medical Work-up for Elders presenting with Confusion
Any elder who presents with confusion should undergo a full medical workup including physical examination, laboratory tests, and other diagnostic tests as determined by the healthcare provider. All of these tests are helpful in ruling out other problems, which are potentially reversible, and determining an accurate diagnosis. To assist in diagnosing the problem, practitioners should conduct an in-depth history of the elder’s day-to-day functioning and any problems in behavior. It is important to obtain as much information from the person, first-hand. But it is also essential to obtain additional information from family and friends who may observe behaviors – this will provide a more reliable picture of the person and of issues.
*****
Figure 3: Steps to Diagnosis
Depression
Depression can be confused with dementia in older individuals. Sometimes people over the age of 60 are treated as if they have a diagnosis of dementia when they become forgetful or present with symptoms of self-neglect: do not eat right, do not pay attention to personal hygiene, or have issues sleeping – too much or too little or exhibit behavioral problems. Elders can have many reasons to be depressed depending on their circumstances: many have chronic medical conditions and experience chronic pain or fatigue; many medications can cause an elder to feel bad; many have lost their loved ones and outlived their friends; and some have lost their homes due to inability to live independently and being placed in a nursing home setting. But being sad and sedentary is not an expectation of mood and level of functioning for people as they age. Depression is often under-diagnosed and under-treated in the older population.
Symptoms of Depression
Sad or Depressed Symptoms Anxious Symptoms
• No interest or pleasure in things one used to enjoy, including sex
• Feeling sad or numb
• Crying easily or for no reason
• Feeling slowed down
• Feeling worthless or guilty
• Change in appetite; unintended change in weight
• Trouble recalling things, concentrating or making decisions
• Problems sleeping, or wanting to sleep all of the time
• Feeling tired all of the time
• Thoughts about death or suicide
Anxious Symptoms
• Anxiety
• Restlessness
• Chronic complaints i.e., pain, constipation, insomnia, etc.
• Muscle irritability
• Irritability
• Concentration problems
• Headaches, backaches or digestive problems
• Insomnia
Depression can lead to physical and psychological impairment as well as diminish quality of life. Older adults who are depressed and do not take care of themselves or of their medical conditions, will likely experience a decline in overall health. For example: an individual with a diagnosis of heart failure who does not adhere to a low salt diet, does not take his diuretic medication, and leads a sedentary lifestyle – the heart failure will worsen and the person will become sicker. Or if a diabetic person takes insulin and does not eat appropriately – the person’s glucose level drops and possibly leads to a hypoglycemia episode. Self-neglect due to depression worsens an older person’s overall health and diminishes quality of life. Depression can cause worsening of chronic medical conditions in elders, lead to increased healthcare costs, and increase the costs of healthcare for society since many of these elders end up in an acute care hospital where management is quite costly. Individuals who are not capable, or not willing, to care for their medical issues often end up in a long term care setting such as a Nursing Home where costs are expensive. Depression can also lead to suicide in elders who may succeed in a covert manner. For example, if an obese male with a history of congestive heart failures ingests a month’s worth of cardiac medications over a short period of time or he was not taking any of his medications at all, he could become extremely ill and this could potentially lead to his death. Care must be taken to appropriately diagnose depression and treat the problem.
Delirium
Delirium is a sudden severe confusion with rapid changes in mentation – occurring over a few hours to a few days with markedly increased changes in level of consciousness including confusion and agitation. Delirium usually has a treatable cause, and once treated, the person returns to their baseline of level of consciousness, orientation, and functioning.
Common causes of delirium in elders
• Urinary tract infection (UTI)
• Upper respiratory infection (URI)
• Constipation
• Dehydration
• Hyperthyroidism or Hypothyroidism
• Depression
• Urinary Incontinence
• Urinary Retention
• Endocrine or other neurological problem
• Reduced Sensory input
* Visual disturbances
* Deafness
* Sudden changes in environment
• Medications (over the counter as well as prescription)
* Antidepressants with stimulating properties or caffeine can cause or exacerbate anxiety
Diagnosis of Exclusion: Once all other potential problems have been ruled out, an individual may be left with a Diagnosis of Dementia
Dementia is not a normal part of the aging process but does affect a significant portion of the elderly population. Some of the pathological causes of dementia include Alzheimer’s disease, vascular disease, Lewy Body dementia, Parkinson’s disease, and Pick’s disease (Alzheimer’s Association, 2006). Alzheimer’s disease is the most common cause of dementia in elders and is a disease of the older population (Alzheimer’s Association, 2010). Individuals who present with confusion or symptoms similar to Alzheimer’s disease who are younger than 40 years, more likely have another diagnosis. Some of the familial forms of Alzheimer’s disease can exhibit themselves in the 40s, but most individuals with Alzheimer’s disease do not exhibit symptoms until they are in their 60s. The chances of acquiring Alzheimer’s disease does increase with age: 1 in 12 people over the age of 65 and 1 in 3 over the age of 80 manifest the symptoms of the disease (AA, 2010).
The goals of treatment with any type of dementia (including Alzheimer’s disease) are to slow the decline of cognition, maintain independence, and optimize an individual’s quality of life. Environmental structuring, behavioral management, and medication usage are the main focus of care. They all must be addressed in order to provide quality care. Medications are often used but a pill is not the ‘quick fix’ to behavioral problems. Environment, routine, and behavioral management must be given attention in combination with any medication to appropriately care for elders with dementia. When a confused individual is placed in an environment which is over-stimulating with too much noise or too much activity or a person’s routine is upset, the individual’s world is upset and these factors can increase the likelihood the person will exhibit behavioral problems. Consistent environment and routine are very important to maintain equilibrium and decrease the incidence of behavioral problems in individuals with cognitive impairment or dementia.
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Chapter 2 References
AARP. (2006). The pocket guide to staying healthy at 50+. Publication No. 04-1P001-A. Retrieved September 10, 2006 from www.ahrq.gov
Alzheimer’s Association. (2010). About Alzheimer’s disease. Retrieved February 10, 2010 from www.alz.org
Alzheimer’s disease Research (2010). Retrieved February 21, 2010 from http://www.ahaf.org/alzheimers/about/understanding/ brain-nerve-cells.html
Byrd, L. (2003). Terminal dementia in the elderly: awareness leads to more appropriate care. Advance for Nurse Practitioners. 11(9):65-72.
Cora, V. (2001) Elder Health. Community Health Nursing: Caring for the Public’s Health. New York: Jones & Bartlett. p. 792-825.
FamilyDoctor.org (2010). Memory Loss With Aging: What’s Normal, What’s Not. Retrieved May 21, 2010 from http:// familydoctor.org/online/famdocen/home/seniors/commonolder/124.html
MayoClinic. (2006) Aging: What to expect as you get older. Retrieved October 14, 2006 from http://www.mayoclinic. com/health/aging/HA00040
Medline Plus. (2010). Aging changes in the nervous system. Retrieved February 21, 2010 from http://www.nlm.nih.gov/ medlineplus/ency/article/004023.htm
Miller, K., Zylstra, R., Standridge, J. (2000). The geriatric patient: A systemic approach to maintaining health. American Family Physician. 61(4):1089-1106.
Reuben, D. B., Yoshikawa, T. T., Besdine, R. W. (2003). What Is A Geriatric Syndrome Anyway? Journal of the American Geriatrics Society. 51(4):574-576.
Senior Journal. (2006). Beers Criteria for mediations to avoid in the elderly. Retrieved October 14, 2006 from http:// seniorjournal.com/NEWS/Eldercare/3-12-08Beers.htm
Tangalos, E. (2010). Diagnosing Alzheimer’s disease: From a Mayo Clinic Expert. Retrieved February 19, 2010.
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Management of Alzheimer’s disease
In this chapter will be a presentation on the stages of Alzheimer’s disease: early, middle, late, and terminal stage, including the physical as well as psychiatric changes and problems occurring. Current treatment plans to manage this disorder will be discussed including common diagnostic testing and management strategies to include behavioral, environmental, and pharmacological interventions.
Introduction
Dementia has been around for a long time but it was not discussed as openly as it is now. In days gone by, families lived, worked, and died in the community where they were born. As grandparents grew older, when they were unable to care for themselves, either due to physical ailments or becoming ‘senile’, the family took them in and cared for them until their death. Many older individuals became confused and were told they had senility or organic brain syndrome. They were told this was a normal part of the aging process. But now this belief is no longer thought to be true; it is not normal to lose the ability to think. Only 10% of the population over the age of 65 have dementia, which means 90% do not. But dementia does impact society and the lives of the individuals with the disease as well as their families.
Previously, the impact of dementia in the older population has not been fully realized due to a common problem of stereotyping elders. This can be a form of ageism which views aging individuals with an expectation to become senile. This causes families to accept dementia as a normal part of the aging process and refrain from talking about this problem. Our current society is very mobile with people moving away for school or jobs, and not staying in the community in which they were born.
Society is now realizing the true impact of ‘senility’ or dementia – the loss of mental functions such as thinking, memory, and reasoning which is severe enough to interfere with a person’s ability to carry out the daily tasks of living. Dementia is not a disease itself, but rather a group of symptoms, caused by various diseases or conditions with symptoms which include changes in personality, mood, and behavior. It develops when the parts of the brain that are involved with learning, memory, decision-making, and language are affected by one or more of a variety of infections or diseases. The key to developing an appropriate plan of care is to differentiate the type of dementia, get an accurate diagnosis, and create an individualized plan of care. There are many causes of dementia in elders including Alzheimer’s disease, Vascular disease, Lewy Body dementia, Pick’s disease, Parkinson’s disease, and other neurological disorders. The most common cause of dementia is Alzheimer’s disease, accounting for greater than 50% of all dementias in elders (MedicineNet, 2010).
Types
of Dementia
Alzheimer’sdisease
Vascular
disease
Lewy
Body disease
Pick’s
disease
Parkinson’s
disease
Other
neurological diseases
Mom
Alzheimer’s disease was given its name in the early 1900’s by Dr. Alois Alzheimer. Auguste D. was a woman who was brought to him for evaluation and treatment. She developed severe confusion, she was disorientated at home, hiding objects, and presented with symptoms of ‘senility’ or dementia – the loss of mental functions such as thinking, memory, and reasoning severe enough to interfere with her ability to carry out the daily tasks of living. She was very paranoid – accusing her husband of having affairs, which was not true since he took care of her 24 hours a day and never left her side. She was admitted to a German hospital and became a patient of Dr. Alzheimer. Upon examination, he found she was unable to remember her husband’s name, the year, or how long she had been at the hospital. She could read but seemed to stress words in an unusual way and she did not seem to understand what she read. She sometimes became agitated and seemed to have hallucinations as well as irrational fears. She worsened over the span of a few years. Upon her death, Dr. Alzheimer examined her brain and found that it appeared shrunken and contained strange clumps of protein (plaques) and tangled fibers inside the nerve cells (neurofibrillary tangles) (MedicineNet, 2010). Auguste D was diagnosed with dementia and Dr. Alzheimer gave the disease its name. It is now clear that Alzheimer’s disease (AD) is the major cause of dementia in elderly individuals.
The U. S. Congress Office of Technology Assessment estimates that as many as 6.8 million people in the United States have dementia, and at least 1.8 million of those are severely affected (MedicineNet, 2010). Research in the last 30 years has led to a greatly improved understanding of what this type of dementia is, risk factors for the disease, and how it affects the brain. Alzheimer’s disease develops slowly and causes a gradual decline in cognitive abilities (Mayo Clinic, 2010). As the disease progresses, nearly all brain functions will be affected, including memory, movement, language, behavior, judgment and abstract reasoning. The rate of progression varies widely from person to person. In some individuals, severe dementia occurs rapidly, within five years after diagnosis. Often individuals are not diagnosed until they are in the middle stage of the disease and live for eight to 10 years longer. But some individuals can live up to 20 years after being diagnosed. People suffering from Alzheimer’s disease will progress in the decline of their cognitive functioning as well as experience a decline in physical functioning. Most people with Alzheimer’s don’t die of the disease itself; they die of complications caused by the disease including pneumonias, urinary tract infections, or complications from a fall such as head trauma (Mayo Clinic, 2010). But Alzheimer’s disease can cause death as the immune system shuts down and the body starts a cascade of multiple organ failure.
Financial Impact of Alzheimer’s Disease
The number of Americans over the age of 65 is expected to grow. People are living longer than ever before due to advances in medical technology as well as social and environmental factors. This, in addition the exploding geriatric population created by the baby boomers aging and graying, will create a dramatic increase in the number of individuals with a diagnosis of AD. In 2000, an estimated 411,000 new cases of Alzheimer’s disease were expected to develop and this number is estimated to have grown to 454,000 in 2010; future projections are an increase to 615,000 by the year 2030 and 959,000 – nearly 1 million – each year by 2050 (2009 Alzheimer’s facts and figures).
Individuals suffering from Alzheimer’s disease and other dementias are high users of healthcare and long-term care services incurring three times more costs than individuals without any form of dementia. The average annual costs for healthcare services are $33,007 for individuals with dementia, compared to $10,603 for individuals without dementia in the same age group (2009 Alzheimer’s Disease Facts & Figures). There are additional factors which can contribute to the overall financial impact of dementia care on caregivers: average out-of-pocket expenses totaling $2,464 annually (co-pays for medications and office visits), plus supplies (mobility devices, incontinence supplies, and dietary supplements), and sitters or assistance for care. There are other factors to consider: the impact of caregivers missing work, going in late, or leaving early to care for the individual with dementia (doctor visits, hospitalizations, or if the person is ill or having behavioral problems). Average outof-pocket costs are highest ($16,689 annually) for individuals who are suffering from Alzheimer’s disease and other dementias living in nursing homes and assisted living facilities. Alzheimer’s and other dementias cost Medicare $91 billion each year and Medicaid spends $21 billion (2009 Alzheimer’s Disease Facts & Figures). These figures will grow quickly as baby boomers begin to gray and this population explodes with many elders developing dementias. Since the greatest risk factor for developing AD is advancing age, many individuals with AD may have other age-related conditions, including hypertension, coronary heart disease, cerebrovascular diasease and diabetes, further increasing the cost of treating these individuals.
Pathophysiology of Alzheimer’s Disease
The brain of a person with Alzheimer’s disease often shows marked atrophy affecting every part of the cerebral cortex with the exception of the occipital pole which is often relatively spared. Microscopically, there are significant losses of neurons as well as shrinkage of large cortical neurons. There is loss of synapses in association with shrinkage of the dendritic arbor of large neurons. The hallmarksof AD are neuritic plaques and neurofibrillary tangles, but these can also be found in other neurodegenerative disorders as well and in individuals who do not exhibit symptoms of AD. Neurofibrillary tangles are found inside neurons and are composed of paired helical filaments of hyperphosphorylated micro-tubuleassociated tau protein. The intracellular deposition may cause disruption of the normal architecture of the brain with subsequent neuronal cell death. Neuritic plaques and neurofibrillary tangles are not distributed evenly across the brain in persons suffering from AD, but are concentrated in vulnerable neural systems (Medscape, 2010).
Other pathological alterations commonly seen in the brains of AD individuals include neuropil threads, granulovacuolar degeneration, and amyloid angiopathy. Amyloid angiopathy is a distinct vascular lesion found in many AD brains. These deposits may cause the involved vessels to become compromised and hemorrhage causing further damage to the brain. Pathological criteria for a definitive diagnosis of AD found during an autopsy are a significant number of neuritic plaques and neurofibrillary tangles seen with microscopic examination. The most consistent neurochemical change associated with AD is a decline in cholinergic activity which is the main focus of treatment in AD. However, additional chemical imbalances have been found in AD including glutamate, norepinephrine, serotonin, somatostatin, and corticotrophin-releasing factors (Medscape, 2010).
Risk Factors for Alzheimer’s Disease
Risk factors for Alzheimer’s disease are variables associated with an increased risk for individuals of developing the disease – they are correlational and not necessarily causal. There are certain characteristics that increase the incidence of a person developing Alzheimer’s disease which include lifestyle, environment, and genetic background. Some risk factors can be modified such as keeping diabetes in control; lowering cholesterol levels; and controlling blood pressure. Other risk factors cannot be modified such as a person’s sex and genetic makeup. In general, most believe that Alzheimer’s disease is caused by a combination of conditions and the effects of the various risk factors which overwhelm the natural self-repair mechanisms in the brain, thus reducing the brain’s ability to maintain healthy nerve cells (Alzheimer’s Society, 2010). Identification of risk factors for Alzheimer’s disease is important because they can indicate lifestyle choices that can help reduce a person’s chance of developing the symptoms of the disease.
Risk factors for developing Alzheimer’s disease
advanced
age
sex : women have a slightly increased risk of developing
AD
cognitive impairment
poorly controlled hypertension
poorly
controlled diabetes
elevated cholesterol levels
low educational
status
certain genetic factors
(Lindsay,
2002; National Institute of Neurological Disorders & Strokes,
2010)
Age
Age is the most important risk factor, as the body loses the ability to repair itself and becomes less efficient. The loss of brain tissue varies from person to person and these differences contribute to the differences in an individual’s susceptibility to develop and exhibit the symptoms of Alzheimer’s disease. Aging individuals also have other risk factors for the disease which increase with age such as elevated cholesterol and being overweight. The older a person becomes, the higher the risk of developing the disease – 1 in 20 over age 65 develop Alzheimer’s disease and 1 in 4 of those over age 85 are affected (Alzheimer’s Society, 2010; NINDS, 2010).
Cardiovascular Disease
Cardiovascular diseases, including high blood pressure and high cholesterol levels, are also risk factors for both Alzheimer’s disease as well as Vascular Dementia.
Diabetes
Diabetes Mellitus type II is a risk factor for Alzheimer’s disease. It is believed that the utilization of glucose in the brains of individuals with Alzheimer’s disease is impaired, somewhat resembling the situation in the bodies of people with Type II Diabetes Mellitus (Alzheimer’s Society, 2010).
Mild Cognitive Impairment (MCI)
In certain individuals, there is a level of cognitive or memory impairment beyond that which usually occurs in individuals normally as they age but not truly a type of “dementia” or “Alzheimer’s disease”– this is mild cognitive impairment (MCI). It is estimated that up to 85% of people with MCI, often at a young age-in their early forties or fifties, will progress to develop Alzheimer’s disease within ten years, making MCI an important risk factor for the disease. Researchers now know that the abnormal changes in the brain characteristic of Alzheimer’s disease can begin to appear in people diagnosed with MCI more than twenty years before there are signs of dementia. Brain imaging may make it possible to detect the most at-risk individuals with MCI, and research is ongoing (Alzheimer’s Society, 2010; NIA, 2010).
Low Levels of Formal Education
Several studies have shown that individuals with less than six years of formal education appear to be at increased risk of developing Alzheimer’s disease. It is theorized that the brain stimulation associated with learning provides a protective effect for the brain and therefore more education provides greater protection. However, new studies challenge this, and it is now being suggested that there may be other factors associated with individuals who have a low educational background, such as an unhealthy lifestyle, which may account for the risk rather than low educational level itself (Alzheimer’s Society, 2010; NIA, 2010).
Other Risk Factors
In addition to the risk factors previously described, the following are additional risk factors for developing Alzheimer’s disease: Down’s Syndrome, head injuries, inflammatory conditions (possibly reflecting immune system malfunction), and a history of depression, anxiety, and/or stress. Other risk factors that are also suggested include smoking, excessive alcohol consumption and drug abuse.
Down’s Syndrome
Down’s syndrome has also been linked to development of Alzheimer’s disease (AD). The presence of extra material found in the genetic make-up of individuals suffering from Down’s syndrome may lead to abnormalities in the immune system and a higher susceptibility to certain illnesses including AD. Individuals with Down’s syndrome also experience premature aging and show physical changes related to aging about 20 to 30 years ahead of people of the same age in the general population. As a result, Alzheimer’s disease is more common in people with Down’s syndrome than in the regular population. Adults with Down’s syndrome often are in their mid to late 40s or early 50s when Alzheimer’s symptoms first begin (WebMD, 2010).
Head injury
Brain injuries at any age such as car accidents or falls, including those who have experienced repeated concussions such as individuals who have repeated seizures or boxers, football players or individuals who have undergone electroconvulsive therapy, are accepted by most clinicians as having an increased risk for
Figure
5: Risk Factors for Developing Alzheimer’s Disease
(Alzheimer’s
Society, 2010)
Genetic Factors
There are some individuals who carry a genetic factor which increases their likelihood of developing AD, but even having the genetic factor does not guarantee a person will develop the disease and exhibit the symptoms of the disease. Scientists have so far identified one Alzheimer risk gene called apolipoprotein E-e4 (APOE-e4) which is one of three common forms of the APOE gene; the others are APOE-e2 and APOE-e3. APOE provides the blueprint for one of the proteins that carries cholesterol in the bloodstream (Alzheimer’s Association, 2010; NIA, 2010). Every person inherits a copy of some form of APOE from each parent and those who inherit one copy of APOE-e4 with the AD marker have an increased risk of developing Alzheimer’s disease. Those who inherit two copies have an even higher risk. But inheriting two APOE-e4 genes with the AD marker does not mean an individual will develop the disease. Scientists do not yet know how APOE-e4 with the genetic marker for AD raises risk but believe that symptoms of the disease will be exhibited in these individuals who have this gene and the symptoms will appear at a younger age than usual-as early as in a person’s in their 40s. Experts believe there may be as many as a dozen other Alzheimer risk genes (Alzheimer’s Association, 2010). Routine genetic testing is not recommended due to the uncertainty of the findings and because true familial Alzheimer’s account for less than 5% of cases.
Preventing Alzheimer’s Disease: Build Cognitive Reserves & Exercise Your Memory
Building cognitive reserves is a lifelong process that begins in childhood when reading skills are learned. According to classic neurological theory, during early development, the human brain forms an enormous number of neurons, or nerve cells, but many of these cells will die as an individual ages. The neurons that survive do so by connecting with other neurons during the rapid-growth stages that occurs in childhood and adolescence. Learning more complex things and reading progressively more challenging books, creating art, playing games, and engaging in any mental activity will help form these vital neural connections that can last an individual’s lifetime. These activities can also buffer individuals from cognitive decline later in life. Some believe that keeping the mind active throughout life may have a protective effect because the brain is like any muscle in the body – if you do not use it, you will lose it – and using the brain will preserve the functioning of the brain. Exercising the mind by learning new things and having fun with memory games are ways which are being recommended to prevent or even slow the cognitive decline associated with Alzheimer’s disease. Researchers discovered that the more active individuals were, the less likely they were to develop Alzheimer’s disease, for example engaging in activities such as playing a musical instrument, gardening, and playing mentally engaging board games (Alzheimer’s Association, 2010). The benefit extended to those who were active between the ages of 40 and 60, so individuals are being encouraged to start building their intellectual muscle by learning new and different things as well as beginning stimulating hobbies which may benefit individuals regardless of the age the activity is started.
Preventing Alzheimer’s disease through Memory techniques
Learning
new things
Auditing classes at colleges
Picture Memory
Match
the Cells
Match the Words
Sudoku Daily
Initiating Medications in the Early Stage of Alzheimer’s is the Key to Slowing the Deterioration
Cholinesterase inhibitors in the early stage of Alzheimer’s disease are the key to slowing the deterioration and preserving mental abilities. They are typically used to treat the early and middle stages of Alzheimer’s disease because the decline in cognition is due to deterioration in the production of acetylcholine which accelerates over time, as more and more brain cells become damaged. Thus, the best chance to achieve a benefit for a person lies at the beginning of the disease even though the benefits of using cholinesterase inhibitors can be seen in all stages of the disease (Answers.com, 2010).
The benefits of cholinesterase inhibitors are judged by three patterns of the symptoms: a) in the early stage of Alzheimer’s disease – improvement in a person’s condition, possibly resulting in slightly improved cognition and memory (but not always); b) stabilization of the symptoms and slowing of the progression of the disease; and c) although it is inevitable the symptoms will worsen over time, slowing the disease advancement but at a rate that is slower than would occur if the drug(s) were not taken.
Stages of Alzheimer’s Disease
There are common patterns of symptom progression that occur in many individuals with AD and there are many ways to stage the progression. Staging systems provide useful frames of reference for understanding how the disease may present in individuals. But it is important to note that not everyone will experience the same symptoms of the disease or progress at the same rate. People suffering from Alzheimer’s disease die an average of four to six years after diagnosis but the duration of the disease can vary from three to 20 years (Alzheimer’s Organization, 2010). The framework for this section is a system that outlines key symptoms characterizing four stages ranging from early to the terminal stage.