“It appears that nursing homes shy away from accepting patients diagnosed with any behavioral health conditions,” said lead study author Helena Temkin-Greener, a public health researcher at the University of Rochester School of Medicine and Dentistry in New York.

Guest Columns – McKnight’s Long Term Care News

Mitchell Gelber, Ed.D, PC

May 09, 2018

A psychologist’s view of best-practice dementia care by: Mitchell Gelber, Ed.D, PC

In the more than 25 years I have worked with people living with the effects of dementia, I have found there are several best practices that are critical when caring for dementia patients in skilled nursing facilities.

Dementia, especially the most common type, has an overlapping presentation that causes neurocognitive, behavioral and personality changes. Yet, due to other interfacing medical and psychiatric factors — as well as the individual’s age, nutrition, social history and educational background — no two presentations are exactly alike and the progress of the disease varies.

Furthermore, it can be difficult to determine a particular resident’s limitations at any given phase of the disease due to increasing communication difficulties as the disease progresses. This leads to uncertainty regarding behavioral planning and medication use. Additionally, treating people with dementia, and working effectively with their families, requires patience and professionalism in the face of slow deterioration.

Given these complexities, it’s no wonder that healthcare providers and staff often struggle to provide optimal care to this challenging population.

Based on my experience, I propose medical, nursing and other healthcare professionals consider the following guidelines in providing appropriate care of people who suffer from dementia. My recommendations begin with the most basic informational elements and then examine their application in the post-acute setting.

1.  Gather as much information as possible during the initial evaluation. The greater the scope of information on a newly admitted resident, the greater the chance of correctly diagnosing and treating the person with the disease. In many cases, family members will prove excellent information regarding the onset of cognitive decline, strategies used by the family to manage behaviors, and other key historical data.
2. Carefully review the patient’s H&P (History and Physical Examination) records. H&Ps from previous providers and facilities primarily provide information about the medical or psychiatric conditions which caused the initial hospitalization.

The medications, diagnoses, testing and observations described will generally alert you to recent events. But dementia is a slowly evolving disease that was probably evident prior to more recent medical events and treatments, and that is critical information. The current problems may have exacerbated an ongoing presentation.

Delirium, often caused by infections, adverse reactions and other medical causes, is often mistaken for dementia in post-acute settings. Once delirium and other medical issues have been ruled out, it is safer to consider a diagnosis of dementia.

3.  Develop an interdisciplinary protocol for monitoring new patients. Consider daily functioning, cognition, comorbidities, mood disorders, agitation, medication management and family interaction. It could take a few weeks for a person with cognitive impairment to adjust to a new setting, settle into a new routine and attain maximum cognitive operation.

If they are dismissed as severely cognitively impaired with no expectation of improvement, they are much less likely to demonstrate their highest practical level of functioning.

4.  Request an assessment by a psychologist in order to identify a historical timeline of cognitive decline and behavioral disturbance. Family members or others involved in the personal life of the resident can supply information regarding previous functionality. By searching for information from multiple sources, you can reduce denial, minimization or distortion of information.
5.  Include all disciplines in your strategy for working with people who have dementia. Physical, occupational, and speech therapy can offer strengthening, simplification of routine and cognitive techniques to help with activities of daily living as well as regular social and family interactions.
6.  Speak the language of the person with dementia. Use their words whenever possible and talk slowly — using simple language, enunciated carefully. Establish and maintain eye contact and direct attention while speaking. Whenever possible, sit down so that you are on the same level as the resident.

If you are going to do a physical examination, ask familiar staff members to join you in the room, and tell the resident what you are going to do BEFORE you commence any action. Use non-verbal signals like gestures and use verbal cueing as a way to determine word-finding capabilities.

7.  Include the patient in decision-making whenever possible, based on his or her cognitive abilities. Unfortunately, once a diagnosis of dementia is made, both staff and families tend to categorize the patient and make assumptions based on their limited knowledge or observations. Role model techniques for giving the resident as much autonomy as possible, as opposed to automatically assuming that the resident is incapable of participating in any treatment planning or decision-making.
8.  Wherever possible, it’s essential that behavioral health specialists assist in monitoring changes in the resident’s status. This will help ferret out what may be causing cognitive, behavioral or mood shifts. When these shifts occur, the provider will be adept at developing changes in the resident’s care plan. My experience is that a high percentage of acute change in the patient progressing with dementia is due to:
9. Changes in daily routine
10. Changes in staffing patterns (stable staffing assignments are an important key to dementia care).
11. Staff interactions and approaches to resident care (for example, when staff members speak too fast or move too quickly without properly preparing the resident for an activity).
12. Family contacts that can stir emotional changes and cause agitation, tears or anger.
13. Unwanted social intrusions from other patients.
14. Develop individualized behavior treatment plans. These plans should monitor problem behaviors and, most importantly, accentuate what strategies work with each patient, i.e. Individualized Treatment Plans.

 

On short-term rehabilitation units, medical staff define specific and concrete medical goals for each person’s stay. Unfortunately, this can cause a lack of attention to cognitive and emotional deficits since these were not the reason for admission.

But facilities that ignore the cognitive and mood issues of subacute rehab patients are missing out on an important opportunity to improve their rehab outcomes. Attending carefully to these issues — including the resident’s resistance to treatment, frequent denial or minimizing by the spouse and family, and other important cognitive and psychiatric factors that may impede a successful short-term stay — will provide important dividends in the success of any rehabilitation program.

This brief overview is intended to provide common sense approaches to working with people who have been correctly diagnosed with dementia. There are myriad varying situations that can occur with a dementia presentation, and I have discovered that focusing on the resident and utilizing basic intervention techniques works best. Thank you to everybody who works with this challenging population.

Mitchell Gelber, Ed.D, PC, is a licensed psychologist with TeamHealth who works with several skilled nursing facilities in Northern Arizona. He is the author of “Alzheimer’s Shadow: families Facing Critical Decisions and his recent publication: Family Planning for Alzheimer’s Disease: Essentials for Best Care.

 

Article written for McKnight’s Long Term Care News

Behavioral & Psychiatric Challenges of Residents in Skilled Care Facilities

Bonnie was admitted to the skilled nursing facility following surgery for a right hip fracture. Prior to admission she was living by herself. She stated that prior to her fall, she was fully independent. There was no local family.  Although she claimed she wanted to return to her apartment, she was slow to gain in therapies, complaining of great pain and isolating in bed. As the consulting psychologist, I was asked to meet with Bonnie as her voiced desires to return to her apartment appeared to be in contrast to her behavior. Staff had recognized her conflicting messages, weakening condition and the need for a psychological intervention. Bonnie was unhappy and fearful. What she had not previously revealed was her recognition of her frailty, several earlier falls and fear that she might have to stay in a skilled nursing facility.

Behavioral and psychiatric concerns offer a most difficult challenge to SNF care. Behavior is more unpredictable and medical issues are aggravated. Thinking clearly could be weakened which effects decision-making and reasoning, and as a staff member your emotional reactions could interfere with best practice interventions.

Up to 70% of residents have a psychiatric diagnosis upon admission. The most common psychiatric diagnoses in SNFs include major depression, bipolar disorder, personality disorders, schizophrenia, dementia (there are several common types), and a number of anxiety disorders. An acute change in medical condition like a stroke, hip or other fracture, loss of limb, peripheral neuropathy or any exacerbation of a chronic condition will create secondary psychiatric disorders. Often staff witness the effects of depression when residents refuse to eat, participate in treatment or take their medications. Residents want to give up! Other times you witness their fears and anxieties through overuse of the call light, yelling, demanding, limiting their risk taking in physical or occupational therapy or fear of what the future holds for them.  There are no easy solutions and your understanding of how these conditions affects resident’s daily functioning is vital. Residents can become uncooperative & demanding, tend to isolate, become verbally and physically threatening, or overly dependent or despondent. This will impact a resident’s motivation, limitations, behavior, attitude and general resiliency to improve their medical situation.

Another important factor which affects mood and behavior is pain. It is safe to state that residents entering the SNF are experiencing some level of pain or discomfort.  Physical pain results from surgery, an injury, a chronic condition either recently aggravated or not directly related to admission. Many people suffer emotional or physical pain when a tragic loss occurs like having to give up their home, pets, separation from loved ones or other dramatic change in their life. If there are cognitive concerns, residents may not be able to clearly note the level of pain or the true location. Additionally, people with dementia or other cognitive impairment will ‘act out’ their pain through resistance, direct aggression or increased anxiety. They are not able to clearly express themselves verbally and their actions are often misunderstood and mislabeled as a behavior issue.

Interventions will vary and focus on only treating the presenting behavior and not its cause. There is a direct positive correlation between knowing the person we work with and providing the best care for that person. Medications are one ingredient in the formula to aide residents suffering from a psychiatric illness or general pain. Medicines can ease symptoms by modifying moods or behavior problems, fight infections and work with psychotic symptoms. Yet primary change comes from consistent treatment that encompasses all disciplines working together.

The professional who is most qualified to work with residents having a psychiatric diagnosis or behavioral concern is a licensed psychologist. Their role in the skilled nursing facility is multi-faceted. Following, is a brief overview of a psychologist’s role.

1. Assessments: Psychologists can provide initial assessments which can support:

• program planning
• input for behavioral charting
• providing staff with techniques for residents with communication or emotional blocks
• dialoging with medical staff for medication management
• work with therapies in treatment planning
• coordinating team approaches to care
• staff education and development seminars
• work with all disciplines to show how their interaction is vital to the residents health.

 

2. Short-term and ongoing counseling to residents who are experiencing dramatic changes in their life due to chronic psychiatric or medical issues and working with end-of-life situations. We meet with families and provide education and emotional comfort during difficult changes, and assist social services and admissions personnel with creating continuing care options upon discharge.

 

3. Psychologists are advocates for the resident and advocates for staff. We provide insight, education, direction and support.

Bonnie was diagnosed with clinical depression. Fueling her symptoms was her recent fall and subsequent hip fracture. Our meetings facilitated her understanding of feelings affecting immediate rehabilitation and options for her future. With the help of therapies and social services, I was able to help Bonnie map out a plan for her rehabilitation and future that felt safe and independent. A nurse practioner was asked to consult on medication management and she was started on a low dose of antidepressant. Bonnie has since moved into an Assisted Living Facility (ALF) and has her own apartment. She has immediate help when needed and regained much of her confidence and sense of purpose. Bonnie volunteers at the ALF, helping to welcome new residents become adjusted to their new home. We maintain outpatient meetings on a monthly basis.

As with all SNF staff, the psychologist looks to provide the best and most comprehensive treatment to residents who will, in all probability, live out their lives with you at their side. Psychologists are invested in all aspects of resident care and make every effort to integrate their expertise with yours: ask questions of you, seek your advice and respond to your queries. Integrating the psychologist into the flow of treatment is facility specific. As professionals, we provide to those who are most infirm, closer to death and most in need of attention, planning and comfort. Recognizing resident limitations while providing optimal care can best be achieved through an integrated team approach.

 

Dr. Mitchell Gelber is a licensed psychologist who works with several skilled nursing facilities in Northern Arizona. He is the author of “Alzheimer’s Shadow: Families Facing Critical Decisions”

He can be reached at drmitchellgelber.com

In this blog by Dr. Gelber, he introduces the reader to Alzheimer’s disease and how this dreadful disease affects family members’ interactions and care.  Be on the lookout for additional excerpts from Dr. Gelber’s 2nd book.

This note is an introduction to Alzheimer’s disease and how this dreadful disease affects family members’ interactions and care.

DEMENTIA: This is the silent dread for people who have had a parent or grandparent diagnosed with Alzheimer’s disease. A change in memory or clear thinking raises suspicion and worry of having some sort of dementia. Statistically, the older you live, the greater is the chance that you will end up with some form of dementia, most likely Alzheimer’s disease (AD). Dr. Gelber’s book addresses the progressive changes that AD causes in the person with the disease, in the family, and in others intimately involved in care. At this writing (2018), there are over 12 million who are in positions of providing care for people in the grip of AD or other form of dementia the debilitating killer of an estimated 5.4 million (and growing) people each year. Billions of dollars and hours of unpaid care are provided by family members for the care of their loved ones. Multiply that number by 3, 4, or 5 and that comes close to those affected by the disease in some personal way. Alzheimer’s disease is the sixth leading cause of death in the United States. There is no cure, there is no reversing the course, and there is no shying away from the obvious truth: Alzheimer’s is a family disease where one family member will die. The statistics mentioned above continue to change. With no known cure in sight, the impact of Alzheimer’s disease will continue grow and play a major factor in family planning. In my two books, Alzheimer’s Shadow: Families Facing Critical Decisions (2013) & Family Planning For Alzheimer’s Disease: Essentials For Best Care, I include family and all who are in continuing contact with those afflicted and who provide some kind of care that supports health, safety, and nurturing during the disease process. I am not able to measure “care”—you are, and you know by your own standards whether you are “family”.

You, as family, understands how much time, effort, and physical and mental anguish, and joy can be involved in caring for those with this killer disease.

People who are thinking clearly can problem-solve independently, learn new information, retain the information, and perform self-care with independence. They function best when operating with a familiar schedule, when they can make independent choices as appropriate, and have time to learn new and complex tasks with reduced background interference. Being deprived of personal independence is a powerful loss; it means losing capabilities that healthier people take for granted. Driving a car, selecting items at the grocery store or clothes for the day—such simple choices as these become challenging and eventually are lost for a person with dementia. The flip side of losing independence is the increase in dependence on others, most notably the family.

Early in the disease process I may lose my way driving in areas vaguely familiar to me and get stressed in high-stimulation situations. With moderate Alzheimer’s, if I am still driving, I will get lost driving in familiar places, not know how to get home from the market, and become dangerous on the road. With advanced Alzheimer’s I will lose understanding of the use of a car. These types of changes hold important indications for how family members respond, the level of independence remaining for the person, and general implications for outside interventions and treatments.

Patterns in families are established early, when a marriage is new, and children are young. Communication, identified roles, and accepted norms define how members of the family work, play, and nurture one another. These are life-long patterns that repeat with little change regardless of time and age. Most adult children, when returning to their parents’ home with their own children, will have moments when they accept the child role in front of their children. When a senior family member develops dementia and can no longer function at the previous cognitive level, role changes occur that challenge others in the family to adjust their established ways. These role changes, in turn, produce conflicts within the family system. The increased loss of independence of the person with Alzheimer’s creates growing dependence on family members providing direct care. The “role reversal” puts added stress on the entire system and confuses younger children when their parents begin “parenting” the children’s grandparents.

Another change that occurs is that of alliance. The ways we connect with our family at primary levels—how we socialize, make pacts, and share information—are constructed by the development of values and morals formed as children. The progressive cognitive limitations caused by the disease begin to erase established alliances formed by families and through friendships as the person with Alzheimer’s misinterprets and distorts information while forgetting the connections to significant others.

Please browse through my host of articles on the website and feel free to contact me.

Maxine was admitted to the skilled nursing facility following surgery for a right hip fracture. Prior to admission she was living by herself. She stated that prior to her fall, she was fully independent. There was no local family.  Although she claimed she wanted to return to her apartment, she was slow to gain in therapies, complaining of great pain and isolating in bed. As the consulting psychologist, I was asked to meet with Maxine as her voiced desires to return to her apartment appeared to be in contrast to her behavior. Staff had recognized her conflicting messages, weakening condition and the need for a psychological intervention. Maxine was unhappy and fearful. What she had not previously revealed was her recognition of her frailty, several earlier falls and fear that she might have to stay in a skilled nursing facility.

Behavioral and psychiatric concerns offer a most difficult challenge to SNF care. Behavior is more unpredictable and medical issues are aggravated. Thinking clearly could be weakened which effects decision-making and reasoning, and as a staff member your emotional reactions could interfere with best practice interventions.

Up to 70% of residents have a psychiatric diagnosis upon admission. The most common psychiatric diagnoses in SNFs include major depression, bipolar disorder, personality disorders, schizophrenia, dementia (there are several common types), and a number of anxiety disorders. An acute change in medical condition like a stroke, hip or other fracture, loss of limb, peripheral neuropathy or any exacerbation of a chronic condition will create secondary psychiatric disorders. Often staff witness the effects of depression when residents refuse to eat, participate in treatment or take their medications. Residents want to give up! Other times you witness their fears and anxieties through overuse of the call light, yelling, demanding, limiting their risk taking in physical or occupational therapy or fear of what the future holds for them.  There are no easy solutions and your understanding of how these conditions affects resident’s daily functioning is vital. Residents can become uncooperative & demanding, tend to isolate, become verbally and physically threatening, or overly dependent or despondent. This will impact a resident’s motivation, limitations, behavior, attitude and general resiliency to improve their medical situation.

Another important factor which affects mood and behavior is pain. It is safe to state that residents entering the SNF are experiencing some level of pain or discomfort.  Physical pain results from surgery, an injury, a chronic condition either recently aggravated or not directly related to admission. Many people suffer emotional or physical pain when a tragic loss occurs like having to give up their home, pets, separation from loved ones or other dramatic change in their life. If there are cognitive concerns, residents may not be able to clearly note the level of pain or the true location. Additionally, people with dementia or other cognitive impairment will ‘act out’ their pain through resistance, direct aggression or increased anxiety. They are not able to clearly express themselves verbally and their actions are often misunderstood and mislabeled as a behavior issue.

Interventions will vary and focus on only treating the presenting behavior and not its cause. There is a direct positive correlation between knowing the person we work with and providing the best care for that person. Medications are one ingredient in the formula to aide residents suffering from a psychiatric illness or general pain. Medicines can ease symptoms by modifying moods or behavior problems, fight infections and work with psychotic symptoms. Yet primary change comes from consistent treatment that encompasses all disciplines working together.

The professional who is most qualified to work with residents having a psychiatric diagnosis or behavioral concern is a licensed psychologist. Their role in the skilled nursing facility is multi-faceted. Following, is a brief overview of a psychologist’s role.

1. Assessments: Psychologists can provide initial assessments which can support:

*program planning

*input for behavioral charting

*providing staff with techniques for residents with communication or emotional blocks

*dialoging with medical staff for medication management

*work with therapies in treatment planning

*coordinating team approaches to care

*staff education and development seminars

*work with all disciplines to show how their interaction is vital to the residents health.

2. Short-term and ongoing counseling to residents who are experiencing dramatic changes in their life due to chronic psychiatric or medical issues and working with end-of-life situations. We meet with families and provide education and emotional comfort during difficult changes, and assist social services and admissions personnel with creating continuing care options upon discharge.
3. Psychologists are advocates for the resident and advocates for staff. We provide insight, education, direction and support.

Maxine was diagnosed with clinical depression. Fueling her symptoms was her recent fall and subsequent hip fracture. Our meetings facilitated her understanding of feelings affecting immediate rehabilitation and options for her future. With the help of therapies and social services, I was able to help Maxine map out a plan for her rehabilitation and future that felt safe and independent. A nurse practioner was asked to consult on medication management and she was started on a low dose of antidepressant. Maxine has since moved into an Assisted Living Facility (ALF) and has her own apartment. She has immediate help when needed and regained much of her confidence and sense of purpose. Maxine volunteers at the ALF, helping to welcome new residents become adjusted to their new home. We maintain outpatient meetings on a monthly basis.

As with all SNF staff, the psychologist looks to provide the best and most comprehensive treatment to residents who will, in all probability, live out their lives with you at their side. Psychologists are invested in all aspects of resident care and make every effort to integrate their expertise with yours: ask questions of you, seek your advice and respond to your queries. Integrating the psychologist into the flow of treatment is facility specific. As professionals, we provide to those who are most infirm, closer to death and most in need of attention, planning and comfort. Recognizing resident limitations while providing optimal care can best be achieved through an integrated team approach.

 Dr. Mitchell Gelber is a licensed psychologist who works with several skilled nursing facilities in Northern Arizona. He is the author of “Alzheimer’s Shadow: Families Facing Critical Decisions”

He can be reached at drmitchellgelber.com

The ‘pre-disease’ adult is generally an active member of our society, with hobbies, social contacts and probably performing volunteer work or even part-time employment. The age of retirement can mean ‘on to other adventures’ and continued activity and health management generally means productive relationships with other older adults and generational family interaction. People of this generation are more apt to live by themselves or with a significant other. There are a larger number of older adults who continue to drive, travel and engage in more independent living styles. With continuing medical advances, people are living longer, healthier and happier.

Cognitively, people have learned the importance of keeping the mind happy also. Reading, word games, using the computer and other ‘brain games’ help to keep our independence for a longer period of time. We have our “senior moments” of word loss, misplacing and forgetfulness. Our reading and decision-making time is slowed and it is sometimes difficult to compete with the younger generations in answering game questions quickly or even to be heard, because they are already on to another subject. Yet, all-in-all, we remain adequately functional and independent of daily care.

If the elders are fortunate to have family nearby, there is an element of safety which cuts stress and general anxiety levels about “what-if” situations, emergency care and routine assistance. Role boundaries are clear (at least not any worse) with other generations in the family and as much as we prize time with children and grandchildren (if fortunate enough), elders cherish alone time. We and our children pay little or no attention to cognitive slips and while we can become frustrated with the changes occurring in the older folks, we tolerate without much significant bother. Hopefully, much of the financial, health, medical and general living decisions have been taken care of with the parent’s participation.

Elders can have safe, appropriate time with younger grandkids without having to be chaperoned by our children. There is an opportunity to become important role models for grandchildren and may even travel with them if appropriate.

Regular professional appointments are kept with clarity about life planning and an active role in the future. Assistance with other medical conditions is available and, with a clear mind participates in accepting potential life threatening changes and medical planning.

This time frame may include what we consider age associated memory impairment. We find subjective complaints of memory deficit with forgetting where we place familiar objects, forgetting names of people we have known well, and increased difficulty with multi-tasking. The elder may speak their medical physician about what they notice but there is no objective evidence of memory deficit noted with work or in social situations. This may be considered a very mild cognitive decline. Is it the earliest stage of Alzheimer’s disease? There is no clinical evidence at present, to support that notion.

Younger children will not notice the subtle decline but teens may pick up on slowed responses or forgetfulness. Generally, the family, if they do notice any changes, will not comment or make light of incongruence’s. Family patterns and routines remain with safety not an urgent matter.

 

PERSON CENTERED CARE WITH ALZHEIMER’S
PART 1

 

My work with individuals and families suffering from Alzheimer’s disease has convinced me that the greatest need for improved care is to enhance our focus on Person Centered Care (PCC).  Specifically, Person Centered Care uses an alliance of the person with Alzheimer’s, his/her family, professionals, and the residence of the person with Alzheimer’s, to provide the most direct personalized care.  Each facet of a loved one’s care is discussed with a plan which utilizes the person’s desires, abilities, limitations, support system, therapies, medical needs and other pertinent information which will create and optimize potential.  This is not an easy task. It requires time, effort, involvement, cooperation and, most importantly, a reorganized thinking of how we relate to people with Alzheimer’s disease.

We all know the immediate presenting signs which alert a person and loved ones to the possibility of this disease. In the earlier times of the disease, a loved one remains functional, alert, independent and capable of an enjoyable life style. As the disease progresses, a person loses abilities which limits independent functioning with increased dependence from other sources. A person begins to lose a sense of self-identity. They question their decisions, doubt and misjudge their abilities, forget how to accomplish tasks and enjoy themselves. Groups homes, assisted living facilities, skilled nursing facilities are all institutions providing group care. That is, personalized care is secondary to the care of the group or unit of people being cared for.  There are group music programs, gardening, drawing, sing-a-longs and other time occupying events for a general group who are in the ‘Alzheimer’s Unit’.  This is not ‘bad’. The general needs of the individuals are accommodated; it is efficient care and peoples’ routine needs are accounted for. What we are not addressing are the individual needs that separate one from another.  Do we know that Ralph likes the same music as Gloria or that Simone likes being read to while Raul would spend time sitting outside near the bird feeders?

When we generalize and say everyone with Alzheimer’s disease is satisfied with similar wants and likes and have the same limitations, we are cheating them of their individuality. We are giving in to the all-or-none thinking which can permeate response to illness; “it’s all downhill from here”.  

There are numerous studies now showing that individualizing treatment for people with Alzheimer’s disease can slow disease process and more importantly have people with this dreadful disease enjoy each day more fully with activities and social interactions that they like and smile about. Isn’t that what it’s really all about?

In my follow-up blog, I will write more about Person Centered Care; setting specific plans and ways we are beginning to institute PCC in local facilities. I will provide links to articles or journals for more information.

If you have forgotten about yesterday, enjoy today at its fullest and think about a wonderful tomorrow!

Until we think again…

 

1. CONFIRM THE DIAGNOSIS-Formal Cognitive Assessment, Neuropsychological Evaluation, Personal & Social History
2. MEET-INCLUDE LOVED ONE ***CONSIDER INCLUDING YOUR LOVED ONE IN #’S 3-10
3. SHARING THE INFORMATION-WHO IS TO KNOW
4. DEVELOP AN INITIAL PLAN: IF & HOW TO SHARE INFORMATION; CARE FOR IMMEDIATE NEEDS; SYMPTOM ASSESSMENT; MAKE DECISIONS REGARDING ANY GENERAL CHANGES TO BE MADE…Assessment for Level of Functionality: Level of Independence & Care Required (Safety)
5. BE VERY CLEAR: THIS IS A TIME TO LIVE LIFE NOT MAKE PLANS TO END LIFE
6. SELECT A ‘POINT’ PERSON TO GATHER INFORMATION AND WORK WITH ALL OTHERS (PROFESSIONALS & SIGNIFICANT OTHERS)
7. GATHER NAMES & RESEARCH THE PROFESSIONALS WHO WILL ASSIST THROUGH THE COURSE OF THE DISEASE (Financial Planning, Medical Assistance, Legal Planning, Family Counseling, Palliative Care Counseling, Advanced Care Planning)
8. IF APPROPRIATE, SET UP INITIAL APPOINTMENTS WITH PROFESSIONALS
9. IF YOUR LOVED ONE IS ABLE TO REMAIN IN THEIR HOUSEHOLD; ARE THERE CHANGES REQUIRED?
10. IF YOUR LOVED ONE IS TO LIVE WITH FAMILY; WHAT PROVISIONS/ADJUSTMENTS ARE TO BE MADE (Children/adolescents, home logistics….)?
11. IF YOUR LOVED ONE HAS TO MOVE TO A DIFFERENT LEVEL OF CARE; HAVE YOU THOROUGHLY RESEARCHED THE OPTIONS?

 

SEVEN LONG-DISTANCE CAREGIVING STRESS BUSTERS (The John Hopkins Bulletins Fall 2014)

1. CANCEL YOUR GUILT TRIP
2. LEARN ALL THAT YOU CAN ABOUT DEMENTIA
3. BE SYSTEMATIC
4. THINK SAFETY
5. ENLIST OUTSIDE HELP
6. REACT PROMPTLY TO SIGNS OF CONGNITIVE AND PHYSICAL TROUBLE
7. TAKE CARE OF YOURSELF

 

From the desk of:

Dr. Mitchell L. Gelber
Licensed Psychologist
Telephone: 928-777-0919
Website: drmitchellgelber.com   

 

In 2012, for the first time in 27 years new criteria and guidelines for the diagnosis of Alzheimer’s disease have been published.  These changes have been led jointly by workgroups from the National Alzheimer’s Association and the National Institutes of Health.  Two of the key changes are the creation of specific phases or stages of Alzheimer’s disease and the inclusion of biomarkers.

The first phase of Alzheimer’s (the guidelines referenced above use the term “stages” instead of “phases”) is now called preclinical Alzheimer’s disease.  Professionals agree that people can have a long period during which changes are occurring in the brain but no outward symptoms are displayed.  The outcome of research into this phase is the ability to predict who is at highest risk for developing the disease and ultimately prevent Alzheimer’s.  As described above, biomarkers may eventually aid in identifying this phase.

The second phase is now called mild cognitive impairment (MCI) due to Alzheimer’s disease.  This phase is marked by mild changes in memory and thinking ability.  These changes are evident to the affected loved one or close family and friends, but not severe enough to interfere with daily activities.  It is believed that everyone who develops Alzheimer’s dementia will have a period of MCI, and not everyone who develops MCI will develop Alzheimer’s dementia.  MCI can be caused by several other factors, such as reactions to medications, depression, vitamin deficiency, Parkinson’s disease, or a brain trauma.

The third phase is dementia due to Alzheimer’s disease.  This phase, marked by changes in memory or cognitive abilities and behavior that impair an individual’s daily life, is currently the most commonly diagnosed and what the general public perceives as Alzheimer’s disease.

The focus of my book will be phases two and three, according to the nomenclature used in the new guidelines: mild cognitive impairment and dementia due to Alzheimer’s disease.  It is during these phases that the family becomes intimately affected and remains so through the course of the disease.  This book is set up into distinct segments: In Chapters 1, 2, and 3, I describe the progression of the disease in three overlapping phases (early, moderate, and advanced).  Each phase is introduced with an Overview Section to acquaint the reader with the most significant features of the phase and how the progression of the disease affects the identified person and family. Global concerns will be addressed in each phase’s overview section.  They include: safety, flow of communication, attention to legal, medical and social concerns, development of long-term plans, the challenge of change, grief, and guilt.  This is followed by a section depicting typical cases families may encounter, with author feedback and suggestions for care.  Additionally, at the conclusion of the author comments  for each case, there is a space for the reader to think and write about how this case is similar to or different from the reader’s own story.  The cases attempt to capture the tone of the changes that are occurring in the affected individual.  Although situations vary from day to day or family to family, there are common signs and symptoms that appear throughout the course of the disease.  After each chapter’s cases, there is a reader participation form to assist families with their plans.

Some readers may choose to read the individual cases in each phase prior to reading the overview for that phase.  Whichever format you choose, I am certain you will gain important insight and information to assist you.

Chapter 4 is included for those readers who would like more technical and medical information regarding the basic etiology and manifestations of Alzheimer’s disease and looks at other forms of dementia that parallel and conflict.  The final chapter will serve to assimilate and summarize previous information, assist with providing a timeline to help identify the myriad changes and simplify an action plan, and focus on key concepts and trends for the family.  In the text, you will see author names and years—for example “(Gelber 1999).”  These will guide you to works in the bibliography where you can find more information about the subject at hand.  I will provide an in-depth presentation of the phases of Alzheimer’s disease as noted above, defining each by means of clear cognitive and behavior changes, most of which are readily identifiable to family members and others intimate with the affected person.  Symptoms within each phase are experienced with varying intensity and progressively increase over time.

The road map of Alzheimer’s disease is not all downhill.  Yes, the outcome is known, the person afflicted will die, AND the road definitely has high points that reflect the discoveries, rediscoveries, and general outpouring of love and nurturing that can occur in families faced with the restrictions the disease presents for us.  The mural has many colors and many sides. As John Zeisel, Ph.D., states in his sensitive book I’m Still Here, “The skills and capacities of people living with Alzheimer’s that don’t diminish over time, or do so more slowly, provide windows for connections and communication.  Through those windows lie opportunities to establish and build new and vibrant relationships that can sustain us and them over time, supporting both care and well-being.” As the disease progresses (dementias in general, Alzheimer’s specifically), there are numerous changes affecting each family member, the family system, and the larger picture involving the professional community and care interventions.

My sincere hope is that you are able to use this book as a stimulus to develop your own effective personal plan.  Aim to maintain the integrity of the person affected with Alzheimer’s, while providing the love, understanding, and care that you and all family members deserve.