Archives for January 2014

Are You Ambivalent About Your Caregiving Role? It’s Normal!

(AARP with Barry Jacobs) I have a confession to make:  I resent driving my 82-year-old mother to visit her husband, my demented stepfather, at the smelly, crowded and unpleasant nursing home where he now is confined. On the 20-minute ride there, I grip the steering wheel and silently seethe. I’m irritable while she and I try to have a comprehensible conversation with him. I can’t wait to get out of there.

On the way home, however, the first flickers of guilt start to take hold. Who am I to complain about this inconvenience, I ask myself, when my mother is experiencing so much loss? Shouldn’t I — a psychologist specializing in alleviating the heartache of family caregiving — have greater maturity and tolerance for being a family caregiver myself? I feel so ashamed about my grouchiness that I try to make up for it by stopping to buy my mother ice cream. I promise her that I will drive her to see him again soon.

Once home and on my own, though, I revert to stewing angrily. Why should I have to feel guilty, I grouse to myself, when I just sacrificed my afternoon to please my mother? Even if I were a sourpuss, isn’t the fact that I’m driving her good enough? I shudder with dread at the memory of promising her yet another nursing home trip.

These feelings are not just a matter of caregiver reluctance. There’s a large part of me that wants to help my mother, is proud of the commitment I’ve made to her, and feels pleased when she feels pleased. What my alternating emotions reflect is caregiver ambivalence — a volatile mixture of contrasting feelings about the hard work of caring for ill, disabled or needy family members that often leads to reactive cycles: Anger triggers guilt, which can then stir up fresh anger. Or, to cite another example, sadness about a care recipient’s condition can spur worry and fretfulness about how best to help him. But then feeling frantic and frustrated can lead to hopelessness and deep sadness once again.

Such ambivalence takes a psychological toll on many family caregivers. Fraught with conflicting feelings, they are often in a state of inner tension that contributes to their high rates of insomnia, burnout, depression and anxiety. Whipsawed by vacillating emotions, they derive little contentment from knowing that they are doing the difficult but right thing for their ailing family member.

What can family caregivers do to minimize the uncomfortable and debilitating effects of caregiver ambivalence? A few ideas:

Accept that you may have different feelings about caregiving at different times. It is normal to have a range of emotions about the work that you’re doing and the sacrifices you are making over the months and years of caregiving. Few caregivers are gung-ho all the time. All of us experience flagging energy and morale at various points. No one benefits if you beat yourself up for lacking constant calm or cheerfulness.

You may even hate caregiving at times and rue the day you committed to it. These, too, are normal and expectable emotions. They don’t necessarily mean that you feel antagonistic toward the person for whom you’re providing care. They may just mean that you don’t enjoy the dirty work that caregiving commonly entails — for instance, helping toilet a loved one or sitting endlessly in doctor’s office waiting rooms.

Accept that you may have different feelings about the care recipient at different times. Not all relationships between a caregiver and care recipient were perfect pairings prior to the care recipient’s need for care. Some spousal caregivers had long-running, lousy marriages. Some adult children felt angry at perennially critical or controlling parents. Even in good family relationships, there is often some measure of annoyance or conflict. Family caregivers bring this old ambivalence into their experience of caregiving and, as you should expect under the new duress, consequently feel ambivalently about the care recipient now. This is normal as well. Caregivers should spare themselves harsh self-judgments for it.

Gauge your feelings to better guide your caregiving. When family caregivers accept the natural ambivalence of caregiving, then they are more comfortable, less reactive and better able to sustain themselves. But they also need to frequently gauge the intensity of their feelings. Caregivers who are overwhelmed all the time with sadness, anger or anxiety — or who have come to feel mostly hatred for the care recipient — need to review their caregiving plans. At the least, they may need to solicit more support from others and say no to or limit tasks that severely stress them. (I’ve cut back on driving to the nursing home.) At the most, they may need to stop caregiving altogether by creating alternative arrangements. Your emotions are justified. Accept and trust them.

Citation

Barry J. Jacobs is a member of the AARP Caregiving Advisory Panel. If you have a caregiving question, submit your query to the panel of experts.

http://www.aarp.org/home-family/caregiving/info-03-2013/ambivalent-about-caregiving-role.html

 

Why the Scientific Method is Crucial to Alzheimer’s Disease Research

Dear Readers:

Every advancement in Alzheimer’s disease research is the result scientific inquiry; that is, inquiry based on empirical or measurable evidence subject to specific principles of reasoning. It is only through the rigorous application of the principles of the scientific method that we will find demonstrable results from which we can move forward in our knowledge of Alzheimer’s disease and other dementias.

So, what is the scientific method, you ask?
File:Pietro Longhi 021.jpg

An 18th-century depiction of early experimentation in the field of chemistry

The scientific method is a body of techniques for investigating phenomena, acquiring new knowledge, or correcting and integrating previous knowledge. To be termed scientific, a method of inquiry must be based on empirical and measurable evidence subject to specific principles of reasoning.

The Oxford English Dictionary defines the scientific method as:

“a method or procedure that has characterized natural science since the 17th century, consisting in systematic observation, measurement, and experiment, and the formulation, testing, and modification of hypotheses.”

Scientific researchers propose hypotheses as explanations of phenomena and design experimental studies to test these hypotheses via predictions which can be derived from them. These steps must be repeatable to guard against mistake or confusion in any particular experimenter.

Theories that encompass wider domains of inquiry may bind many independently derived hypotheses together in a coherent, supportive structure. Theories, in turn, may help form new hypotheses or place groups of hypotheses into context.

Scientific inquiry is generally intended to be as objective as possible in order to reduce biased interpretations of results. Another basic expectation is to document, archive, and share all data and methodology so they are available for careful scrutiny by other scientists, giving them the opportunity to verify the results by attempting to reproduce them.

This practice, called full disclosure, also allows statistical measures of the reliability of the data to be established (when data is sampled or compared to chance). [Source: http://en.wikipedia.org/wiki/Scientific_method]

And what are the areas of Alzheimer’s disease research today that are part of our history of scientific inquiry?

I would like to introduce you to CADRO.

~ Jennifer


The Common Alzheimer Disease Research Ontology (CADRO) is a collaborative effort between the National Institute on Aging (NIA) and the Alzheimer’s Association (AA). The project started in May 2010 for the purpose of conducting a comparative analysis of the NIA and AA Alzheimer’s disease (AD) research portfolios. The goal is to support communication and facilitate in the sharing of priorities among federal and non-federal agencies that support AD research.

CADRO was developed as a three-tiered classification system to capture the complete range of AD research – (basic, translational and clinical) and AD research-related resources.

The first level of classification is organized around five broad research and two research resources-related categories:

  • Category A – Molecular Pathogenesis and Physiology of Alzheimer’s Disease
  • Category B – Diagnosis, Assessment and Disease Monitoring
  • Category C – Translational Research and Clinical Interventions
  • Category D – Epidemiology
  • Category E – Care, Support and Health Economics of Alzheimer’s Disease
  • Category F – Resources for the Research Community
  • Category G – Consortia and Public Private Partnerships

Each category is divided into research “topics” and some of these topics are further divided into “themes.” Such level of detail can enable funders to identify research gaps, areas of duplication and opportunities for coordination with much greater specificity.

Category A. Molecular Pathogenesis and Physiology of Alzheimer’s Disease

This category includes research focused on the molecular and physiological processes underlying Alzheimer’s disease pathogenesis and the genetic and epigenetic determinants of AD.

  1. Amyloid
    1. APP Structure and Function
    2. APP Processing
    3. APP Signaling
    4. Secretases
    5. Amyloid beta Clearance
    6. Amyloid beta Structure, Assembly, and Aggregation
    7. Amyloid beta-Mediated Pathogenesis
  2. Tau
    1. Normal Functions of Tau
    2. Tau Phosphorylation, Metabolism, and Assembly
    3. Tau-Mediated Pathogenesis (AD)
  3. Presenilins
    1. Apoptosis
    2. Calcium Signaling
    3. Autophagy
    4. Structure-Function Analysis
  4. ApoE and Lipids
    1. ApoE in Abeta-Mediated AD Pathogenesis
    2. ApoE in AD Pathogenesis Independent of Abeta
    3. Brain Cholesterol Metabolism
    4. Lipid-Mediated Signaling
    5. Lipoprotein Receptors
    6. Nuclear Receptors
    7. Myelin
  5. Brain Circuits and Synapses
    1. Synaptic Plasticity and Synaptic Dysfunction
    2. Selective Vulnerability
    3. Neurotransmitter Receptors Structure and Function
    4. Network Function and Failure
    5. Neurogenesis
  6. Cell Death
    1. Apoptosis
    2. Oxidative Stress
    3. Autophagy-Mediated Cell Death
    4. Calcium-Mediated Cell Death
    5. Cell Cycle Re-Entry
    6. Ubiquitin Protease System
  7. Immunity and Inflammation
    1. Astrocytes
    2. Microglia
    3. Innate Immunity
    4. Immunotherapy – Mechanisms of Action
    5. Inflammatory Mediators
  8. Bioenergetics
    1. Mitochondria
    2. CNS Glucose Metabolism and Ketogenesis
  9. Vascular/Metabolic Factors
    1. Cerebrovascular Disease
    2. BBB and Neurovascular Unit
    3. Insulin Resistance and Type II Diabetes
    4. Hypertension
    5. Dyslipidemia
    6. Atherosclerosis
    7. Obesity
    8. Metabolic Syndrome
  10. Hormones
    1. Sex Hormones
    2. Growth Hormones
    3. Stress Hormones
  11. Genetics
    1. Candidate Gene Approach
    2. Genome-Wide Approach
    3. Epigenetic and Epigenomic Approaches
    4. Genetic Architecture
    5. Gene-Gene and Gene Environment Interactions
    6. Expression Profiling
    7. Disease Pathways Identification
    8. Next Generation Sequencing
    9. Genetic Data Use and Analysis
  12. Other

Category B. Diagnosis, Assessment, and Disease Monitoring

This category includes research focused on the development, testing and validation of tools and methods for diagnosing and monitoring patients with AD from the preclinical phase of the disease through advanced dementia. These methods and tools include all types of novel and established biomarkers.

  1. Fluid Biomarkers
    1. CSF Biomarkers
    2. Blood Biomarkers
  2. Imaging Biomarkers
    1. PET Amyloid Imaging
    2. PET Non-Amyloid Imaging
    3. Functional MRI
    4. Structural MRI
    5. Other Brain Imaging Tools
  3. Cognitive, Behavioral and Functional Assessment
    1. Cognitive
    2. Behavioral
    3. Functional
  4. Multimodal Biomarkers
  5. Novel Biomarkers
  6. Novel Methodologies and Techniques
  7. Other

Category C. Translational Research and Clinical Interventions

This category aims to capture projects focused on the identification and development of therapies (small molecule, natural products, and biologics) for AD from early therapeutic discovery through late stage preclinical development and all stages of clinical testing. Also included are projects focused on repurposing pharmacological agents already in use for other conditions as well as non-pharmacological interventions.

  1. Drug Discovery (small molecules and biologics)
    1. Amyloid
    2. Tau
    3. ApoE, Lipids and Lipoprotein Receptors
    4. Neurotransmitter Receptors
    5. Neurogenesis
    6. Inflammation
    7. Oxidative Stress
    8. Cell death
    9. Proteostasis
    10. Metabolism and Bioenergetics
    11. Vasculature
    12. Growth Factors and Hormones
    13. Epigenetic Regulators
    14. Multi-target
    15. Unknown target
    16. Other
  2. Preclinical Drug Development (small molecules and biologics)
    1. Amyloid
    2. Tau
    3. ApoE, Lipids and Lipoprotein Receptors
    4. Neurotransmitter Receptors
    5. Neurogenesis
    6. Inflammation
    7. Oxidative Stress
    8. Cell death
    9. Proteostasis
    10. Metabolism and Bioenergetics
    11. Vasculature
    12. Growth Factors and Hormones
    13. Epigenetic Regulators
    14. Multi-target
    15. Unknown target
    16. Other
  3. Preclinical Proof of Concept for Non-Pharmacological Interventions
    1. Exercise
    2. Diet
    3. Enrichment
    4. Combination therapy
    5. Other
  4. Clinical Trial Design
  5. Early-stage Clinical Drug Development (Phase I and Phase II Clinical Trials)
    1. Amyloid
    2. Tau
    3. ApoE, Lipids and Lipoprotein Receptors
    4. Neurotransmitter Receptors
    5. Neurogenesis
    6. Inflammation
    7. Oxidative Stress
    8. Cell death
    9. Proteostasis
    10. Metabolism and Bioenergetics
    11. Vasculature
    12. Growth Factors and Hormones
    13. Epigenetic Regulators
    14. Multi-target
    15. Unknown target
    16. Other
  6. Late-stage Clinical Drug Development (Phase III Clinical Trials)
    1. Amyloid
    2. Tau
    3. ApoE, Lipids and Lipoprotein Receptors
    4. Neurotransmitter Receptors
    5. Neurogenesis
    6. Inflammation
    7. Oxidative Stress
    8. Cell death
    9. Proteostasis
    10. Metabolism and Bioenergetics
    11. Vasculature
    12. Growth Factors and Hormones
    13. Epigenetic Regulators
    14. Multi-target
    15. Unknown target
    16. Other
  7. Non-Pharmacological Interventions
    1. Exercise
    2. Diet
    3. Cognitive Training
    4. Combination therapy
    5. Other
  8. Clinical Therapy Development for the Neuropsychiatric Symptoms of AD
    1. Pharmacological
    2. Non-Pharmacological
  9. Clinical Ethics
  10. Other

Category D. Epidemiology

This category includes all types of epidemiological studies (cross-sectional, prospective, and longitudinal) aimed to examine how a variety of genetic, lifestyle, and environmental factors influence the incidence, prevalence, and clinical course of AD.

  1. Genetic/Epigenetic Risk
  2. Cardiovascular and Metabolic Factors
  3. Nutrition and Other Environmental Factors
  4. Multimodal Risk Factors
    1. Hispanics
    2. African-Americans
    3. Japanese-Americans
    4. Multi-Racial/Cross-Cultural
    5. International (Israel, Sweden, China, India)
    6. Women
    7. Oldest Old
  5. Other

Category E. Care, Support, and Health Economics of Alzheimer’s Disease

The research in this category includes projects aimed at improving the quality of care and quality of life for AD patients in a variety of care-giving settings (e.g., in the home, nursing home facilities, hospice programs) and across diverse populations. This category also includes research focused on alleviating the physical and emotional burden associated with caregiving as well as projects focused on assessing the socioeconomic burden of AD.

  1. Care Interventions and Quality of Life
    1. Cognitive Training Interventions
    2. Health and Wellness
    3. Behavioral Interventions
    4. Hospice and End-of-Life Care
    5. Staff Training and Professional Development
    6. Assessment and Metrics
    7. Neuropsychological Interventions
    8. Other Interventions
  2. Technology Assisted Care
    1. Personal Device Assisted Care
    2. Computer Assisted Care
    3. Environmental Modifications
    4. TV/Video Assisted Care
    5. Other Technology Assisted Care
  3. Caregiver Support
    1. Caregiver Training
    2. Home-Based Support
    3. Behavioral Interventions
    4. Relationship Interventions
    5. Assessment and Metrics
  4. Cultural Values and Beliefs
    1. Chinese
    2. American Indian
    3. African Americans
    4. Latino/Hispanic
    5. Japanese
    6. Assessment and Metrics
  5. Economic Burden of Alzheimer’s Disease
  6. Other

Category F. Research Resources

This category includes a variety of resources used to conduct, translate, and disseminate high quality AD research such as research centers, infrastructure (e.g., various cores), data and tissue repositories and projects focused on generating disease models. Training and career development programs are also included in this category. Projects in this category may also be reflected in Categories A-E based on scientific relevance.

  1. Alzheimer’s Disease Centers
    1. Administrative Core
    2. Clinical Core
    3. Data Management and Statistics Core
    4. Education and Information Core
    5. Neuropathology Core
    6. Imaging Core
    7. Optional Cores
  2. Other Types of Cores (e.g., program projects)
  3. Professional and Career Development
    1. Faculty Recruitment
    2. Clinical Scientist Career Development
    3. Training Grants
    4. Conferences/Workshops/Symposia
  4. Repositories and Bioinformatics Tools and Resources
    1. Biobanks
    2. Data Repositories
    3. Bioinformatics
  5. Infrastructure (including equipment, construction, technology, etc.)
  1. Disease Models
    1. Invertebrates
    2. Vertebrates
    3. Rodents
    4. Higher Mammals
    5. iPS Cells
  2. Other

Category G. Consortia and Public Private Partnerships

This category includes partnership enterprises created to enable major national and international efforts in basic and translational AD research. Projects categorized in this category may also be reflected in Categories A-F based on scientific relevance.

  1. Consortia
  2. Public Private Partnership
Citation

CADRO Coding Guidelines (PDF, 632K)

http://www.nia.nih.gov/research/dn/common-alzheimers-disease-research-ontology-cadro

 

10 Tips for Long-Distance Alzheimer’s Disease Caregiving

(WebMD) If your mother has Alzheimer’s disease and lives in Phoenix and you’re in New York, how do you help take care of her? Angela Heath, director of the Eldercare Locator Hotline of the National Association of Area Agencies on Aging, has compiled 10 strategies to help you cope. This article is adapted from Heath’s book, Long-Distance Caregiving: A Survival Guide for Far Away Caregivers.

Tip No. 1: Get organized

Keep track of important information in a care log.

Tip No. 2: Identify your informal network

Ask for help from people in the older person’s community, such as relatives, neighbors, longtime family friends, and members of religious, civic, and social organizations. Ask them to call you collect if they spot a problem.

You can install a webcam in your parent’s home as a way to speak with them daily – and see them too. Also consider buying a necklace for your parent that can alert the police or paramedics with the push of a button.

Tip No. 3: Investigate travel alternatives

Be prepared to “care commute.” Investigate travel options in advance. Keep your car in good repair, and check on the route and weather before traveling.

If you rent a car, look for the best rates. Don’t pay for insurance if you already carry full coverage or your credit card company offers coverage. You may get a discount when buying bus or train tickets if you disclose that it’s an emergency. Learn how to buy airline tickets in a way that ensures you get the best deal.

Tip No. 4: Discuss legal and financial issues

These topics may be difficult to talk about, but they help ensure that the older person maintains decision-making authority even when incapacitated. Preplanning will also lessen family disagreements and protect family resources.

Will: the older person decides how to dispose of assets after death.

  • Power of attorney: gives a caregiver the authority to act on behalf of the older person.
  • Trust: estate-planning document allows the older person to transfer assets and avoid probate and other legal problems.
  • Joint ownership: makes it easier to gain access to older person’s finances.
  • Representative payee: A caregiver receives government checks for an older person unable to manage money.
  • Medigap insurance: pays portion of medical bills not covered by Medicare.

Tip No. 5: Take care of necessary paperwork

Find all legal, financial, and insurance documents, including birth certificates, social security cards, marriage or divorce decrees, wills, and power of attorney documents. Identify bank accounts, titles, sources of income and obligations, and auto, life, homeowner’s, and medical insurance papers. Review these documents for accuracy and update them if necessary. Store documents in a secure place such as a safe-deposit box or a fireproof box. Be safe — make duplicate copies.

Tip No. 6: Tap into the aging network

Contact the local department on aging in your relative’s community. This agency can help you identify helpful services. Use the National Eldercare Locator Service at (800) 677-1116 to find local aging agencies.

Tip No. 7: Develop a plan of care

If possible, bring the family together for a meeting. Decide with the older person what the primary needs are, who can provide assistance, and what community resources would help. Summarize your agreement in writing. Keep in mind that family difficulties are typical. You may need to bring in a family therapist or social worker to help.

Tip No. 8: Adjust your plan of care when necessary

Be aware that your care plan may need to be altered. The older person’s needs may change, and helpers will come and go. Use your care log to deal with changes.

Tip No. 9: Explore relocation issues

Primary questions are when, who, and where.

  • When: Relocation is appropriate when a health professional recommends a change, the older person needs 24-hour care, his or her safety is at risk, or the home does not meet fire or safety standards. Other reasons may be less obvious. Remember, the older person may be willing to bear a little inconvenience to remain in his or her home.
  • Who: Should you or the older person relocate? Examine the financial and emotional costs.
  • Where: There are many options for senior housing. Contact your local department of aging for assistance.

Tip No. 10: Take care of yourself

Maintain good health, make time for yourself, set limits, and allow others to help.

Citation

http://www.webmd.com/alzheimers/guide/long-distance-caregiving

© 2015 WebMD, LLC. All rights reserved.

 

Live in Europe? Alzheimer Europe is a Great Resource for You

(Alzheimer Europe) Alzheimer Europe is an umbrella organization of 36 Alzheimer associations from 32 countries across Europe. Originally, these associations were created for three reasons:

  • to provide much-needed information on Alzheimer’s disease
  • to provide support for carers and to provide them with the possibility to exchange information and experiences
  • to raise awareness in order to ensure that people are diagnosed properly and promptly.

Over time, the associations have grown considerably, both in the size of each organisation but also in terms of the number of national associations which now exist. As the organisations grew, so did their work mandate which extended to include campaigns for particular issues as well as policy work.

Alzheimer Europe currently has 37 member associations from 32 countries across Europe. News from our members can be found here.

Alternatively, here is a list of member organizations and links to their websites:

Full Member Organisations

Austria Alzheimer Austria
Belgium Ligue Nationale Alzheimer Liga
Bulgaria Alzheimer Bulgaria
Croatia Alzheimer Croatia
Cyprus Pancyprian Alzheimer Association
Czech Republic Ceská alzheimerovská spolecnost
Denmark Alzheimerforeningen
Finland Muistiliitto ry
France France Alzheimer
Germany Deutsche Alzheimer Gesellschaft
Greece Panhellenic Federation of Alzheimer’s Disease and Related Disorders
Iceland Félag áhugafólks og aðstandenda Alzheimerssjúklinga  og annarra skyldra sjúkdóma
Ireland Alzheimer Society of Ireland
Israel EMDA – The Alzheimer’s Association of Israel
Italy Federazione Alzheimer Italia
Jersey Jersey Alzheimer’s Association
Luxembourg Association Luxembourg Alzheimer
Malta Malta Dementia Society
Monaco Association Monégasque pour la recherche sur la maladie d’Alzheimer
Netherlands Alzheimer Nederland
Norway Nasjonalforeningen for folkehelsen
Poland Polish Alzheimer’s Association
Portugal Alzheimer Portugal
Romania Societatea Alzheimer
Slovakia Slovak Alzheimer’s Society
Slovenia Slovensko združenje za pomoč pri demenci Spominčica
Spain Confederación española de familiares de Alzheimer y otras demencias
Spain Fundación Alzheimer España
Sweden Alzheimer Sverige
Sweden Demensförbundet
Switzerland Association Alzheimer Suisse
Turkey Alzheimer Dernegi
United Kingdom Alzheimer Scotland
United Kingdom Alzheimer’s Society

Provisional Member Organisations

Bosnia and Herzegovina Udruženje AiR
Bulgaria Foundation Compassion Alzheimer Bulgaria
Italy Alzheimer Uniti Onlus

 

Citation

http://www.alzheimer-europe.org/Alzheimer-Europe/Who-we-are/Our-members

Copyright © 2015 Alzheimer Europe

 

Hospitalization Happens: A Guide to Hospital Visits for Individuals with Memory Loss

(Alzheimer’s Disease Education and Referral Center) A trip to the hospital with a person who has memory loss or dementia can be stressful for both of you. This brochure can relieve some of that stress by helping you prepare for both unexpected and planned hospital visits.

Print this publication (Download PDF 5.42 MB) »


 

Here, you will find: steps you can take now to make hospital visits less traumatic; tips on making your relative or care partner more comfortable once you arrive at the hospital; and suggestions on how to work with hospital staff and doctors.

Share this information with family and friends, keep this brochure in a convenient location, and begin preparing now for what will happen in the future.

Hospital Emergencies: What You Can Do Now

Planning ahead is key to making an unexpected or planned trip to the hospital easier for you and your care partner. Here is what you should do now:

  • Think about and discuss hospitalization before it happens and as the disease and associated memory loss progress.
  • Hospitalization is a choice. Talk about when hospice may be a better and more appropriate alternative.
  • Register your relative for a MedicAlert® + Alzheimer’s Association Safe Return® bracelet through your local Alzheimer’s Association chapter. People who are lost may be taken to an emergency room. This bracelet will speed up the process of reconnecting you with your care partner. Learn more about safety-related programs such as Project Lifesaver International (www.projectlifesaver.org).
  • Know who you can depend on. You need a family member or trusted friend to stay with your care partner when he or she is admitted to the emergency room or hospital. Arrange to have at least two dependable family members, neighbors, or friends you can call on to go with you or meet you at the hospital at a moment’s notice so that one person can take care of the paperwork and the other can stay with your care partner.

Pack an Emergency Bag Containing the Following:

Personal Information Sheet

Create a document that includes the following information about your care partner:

  • Preferred name and language (some people may revert to native languages in late-stage Alzheimer’s disease)
  • Contact information for doctors, key family members, clergy and helpful friends (also program into cell phone, if applicable)
  • Illness or medical conditions
  • All current medicines and dosage instructions; update whenever there is a change
  • Any medicines that have ever caused a bad reaction
  • Any allergies to medicines or foods; special diets
  • Need for glasses, dentures or hearing aids
  • Degree of impairment and amount of assistance needed for activities
  • Family information, living situation, major life events
  • Work, leisure and spiritual history
  • Daily schedule and patterns, self-care preferences
  • Favorite foods, music, and things your care partner likes to touch and see
  • Behaviors of concern; how your relative communicates needs and expresses emotions

Paperwork

Include copies of important documents such as:

  • Insurance cards (include policy numbers and pre-authorization phone numbers)
  • Medicaid and/or Medicare cards
  • Durable Power of Attorney, Health Care Power of Attorney, Living Will and/or an original DNR (do not resuscitate) order

Supplies for the Care Partner

  • A change of clothing, toiletries and personal medications
  • Extra adult briefs (e.g., Depends), if usually worn. These may not be available in the emergency room if needed
  • Moist hand wipes such as Wet Ones; plastic bags for soiled clothing and/or adult briefs
  • Reassuring or comforting objects
  • An iPod, MP3 or CD player; earphones or speakers

Supplies for the Caregiver

  • A change of clothing, toiletries and personal medications
  • Pain medicine such as Advil, Tylenol or aspirin. A trip to the emergency room may take longer than you think. Stress can lead to a headache or other symptoms.
  • A pad of paper and pen to write down information and directions given to you by hospital staff. Keep a log of your care partner’s symptoms and problems. You may be asked the same questions by many people. Show them what you have written instead of repeating your answers.
  • A sealed snack such as a pack of crackers and a bottle of water or juice for you and your care partner. You may have to wait for quite a while.
  • A small amount of cash.
  • A note on the outside of the emergency bag to remind you to take your cell phone and charger with you.

By taking these steps in advance, you can reduce the stress and confusion that often accompany a hospital visit, particularly if the visit is an unplanned trip to the emergency room.

At the Emergency Room

A trip to the emergency room may fatigue or even frighten your care partner. There are some important things to remember:

  • Be patient. It could be a long wait if the reason for your visit is not life-threatening.
  • Recognize that results from lab tests take time.
  • Offer physical and emotional comfort and verbal reassurance to your relative. Stay calm and positive. How you are feeling will get absorbed by others.
  • Realize that just because you do not see staff at work does not mean they are not working.
  • Be aware that emergency room staff often have limited training in Alzheimer’s disease and related dementias, so try to help them better understand your care partner.
  • Encourage hospital staff to see your relative as an individual and not just another patient with dementia who is confused and disoriented from the disease.
  • Do not assume your care partner will be admitted to the hospital.

Do not leave the emergency room to go home without a follow-up plan. If you are sent home, make sure you have all instructions for follow-up care.

Before a Hospital Stay

If your relative is going to the hospital for a planned stay, you have time to prepare and get more information from your doctor. Ask your doctor if the procedure can be done as an outpatient visit. If not, ask if tests can be done before going to the hospital to shorten the hospital stay. Ask if your doctor plans to talk with other doctors. If so, find out if your care partner can see these specialists before going into the hospital.

You should also ask questions about anesthesia, catheters and IV’s. General anesthesia can have side effects. Ask if local anesthesia is an option and ask to be allowed in the recovery room. Insist that regular Alzheimer’s medications be continued throughout the hospital stay unless contraindicated. Discourage stopping cholinesterase inhibitors (Aricept, Exelon, Razadyne).

With Alzheimer’s disease and related dementias, it is wise to accept that hospitalization is a “when” and not an “if” event. Due to the nature of the disease, it is very probable that, at some point, the person you are caring for will be hospitalized. Medical facilities are not typically well designed for those with dementia, and advance planning and preparation can make all the difference.

Build a team for care and support during a hospital stay. Develop roles for each person (spokesperson, hands-on caregivers, comfort people, home and personal affairs manager, communication center person). Do not try to do it alone. Now may be the time to have one-on-one caregivers on site if money or resources permit. They can help make sure medications and/or physical restraints are not used to control behaviors that can be managed with redirection or distraction.

Before your hospital visit, prepare a list of questions and concerns for your doctor.

Before Going to the Hospital

  • If your insurance allows, ask if a private room is available. It will be more quiet and calm. Request a reclining chair or bed for you or a companion/respite provider.
  • Shortly before going to the hospital, decide the best way to tell your care partner that the two of you are going to spend a short time in the hospital.
  • Involve your care partner in the planning process as much as possible.
  • Do not talk about the hospital stay in front of your care partner as if he or she is not there. This can be upsetting and embarrassing.
  • Plan ahead. Make a schedule with family, friends and/or a professional respite care provider to take turns staying with your care partner while in the hospital. This is particularly important if your relative needs continuous supervision.

During the Hospital Stay

  • Ask the hospital staff to avoid using physical restraints.
  • Have a family member, trusted friend or hired caregiver with your care partner at all times if possible—even during medical tests. This may be hard to do, but it will help keep your care partner calm and less frightened, making the hospital stay easier.
  • Use a “telephone tree,” email or online tools to keep others posted of progress. This can greatly reduce stress and make sure that you do not receive calls just as you get your care partner settled down. You may need to turn the ringer on the phone down or off during rest times.
  • Ask doctors to limit the questions directed to your relative, who may not be able to answer accurately. Instead, arrange to answer questions from the doctor in private, outside your care partner’s room.
  • Modify the hospital room for best performance.
  • Help your relative fill out menu requests. Open food containers and remove trays. Assist with eating as needed.
  • Remind your care partner to drink fluids. Offer fluids regularly and have him or her make frequent trips to the bathroom.
  • Assume your care partner will experience difficulty finding the bathroom and/or using a call button, bed adjustment buttons or the phone.
  • Communicate with your care partner in the way he or she will best understand or respond.
  • Recognize that an unfamiliar place, medicines, invasive tests and surgery will make a person with dementia more confused. Your relative will likely need more assistance with personal care activities.
  • Take deep breaths and schedule breaks for yourself!
  • Be aware of acute or sudden confusion or delirium, which can be caused by serious medical problems such as fever, infection, medications and/or dehydration. Inform the doctor as soon as possible if your care partner seems suddenly worse or different. Make sure you advocate for the person you are caring for…others may not recognize the difference in your relative’s condition.

If Anxiety or Agitation Occurs

Try some of the following:

  • Remove personal clothes from sight.
  • Post reminders or cues if this comforts your care partner.
  • Turn off the television, telephone ringer and intercom. Minimize background noise to prevent overstimulation.
  • Talk in a calm voice and offer reassurance. Repeat answers to questions when needed.
  • Provide a comforting touch or distract your care partner with offers of snacks and beverages.
  • Consider “unexpressed pain” (i.e., furrowed brow, clenched teeth or fists, kicking). Assume your relative has pain if the condition or procedure is normally associated with pain. Ask for pain evaluation and treatment every four hours without your care partner having to ask for it—especially if he or she has labored breathing, loud moaning, crying or grimacing, or if you are unable to console or distract your care partner.
  • Listen to soothing music or try comforting rituals such as reading, praying, singing or reminiscing.
  • Slow down; try not to rush your care partner.
  • Avoid talking about subjects or events that may upset your care partner.

Working With Hospital Staff

Remember that not everyone in the hospital knows the same basic facts about memory loss and Alzheimer’s disease or related dementias. You may need to help teach hospital staff what approach works best with your care partner, what distresses or upsets him or her, and ways to reduce this distress.

You can help the staff by providing them with a personal information sheet that includes your care partner’s normal routine, how he or she prefers to be addressed (e.g., Miss Minnie, Dr. James, Jane, Mr. Miller, etc.), personal habits, likes and dislikes, possible behaviors (what might trigger them and how best to respond), and nonverbal signs of pain or discomfort.

Help staff understand what your care partner’s “baseline” is (prior level of functioning) to help differentiate between dementia and acute confusion or delirium.

You should:

  • Make the personal information sheet easy to read with headings and short, simple statements. Place a copy with the chart in the hospital room and at the nurse’s station.
  • With the hospital staff, decide who will do what for your care partner. For example, you may want to be the one who provides assistance with bathing, eating or using the bathroom.
  • Inform the staff about any hearing difficulties and/or other communication problems your relative may experience and offer ideas for what works best in those instances.
  • Make sure your care partner is safe. Tell the staff about any previous issues with wandering, getting lost, falls, suspiciousness and/or delusional behavior.
  • Not assume the staff knows your care partner’s needs. Inform them in a polite, calm manner.
  • Ask questions when you do not understand certain hospital procedures and tests or when you have any concerns. Do not be afraid to be an advocate for your relative.
  • Plan early for discharge. Ask the hospital discharge planner about eligibility for home health services, equipment or other long-term care options. Prepare for an increased level of caregiving.

Realize that hospital staff are providing care for many people. Practice the art of patience.

What is possible and reasonable are two different things…Which would your care partner want?

Make Contact with Helpful Resources

The following agencies can provide you with information about Alzheimer’s disease and related disorders and connect you with community programs and services such as support groups and respite care:

Alzheimer’s Disease Education and Referral (ADEAR) Center
1-800-438-4380 (toll-free)
www.nia.nih.gov/alzheimers

Alzheimer’s Association
1-800-272-3900 (toll-free)
www.alz.org

Eldercare Locator
1-800-677-1116 (toll-free)
www.eldercare.gov

Family Caregiver Alliance
1-800-445-8106 (toll-free)
www.caregiver.org

Caregiver Action Network
1-800-896-3650 (toll-free)
www.caregiveraction.org

Additional Resources

University of California, San Francisco, Memory and Aging Center
Partner With Me Project
http://memory.ucsf.edu/caregiving/hospitalization

See the video “Partnering with Family Caregivers: A Guide for Hospitalization When Your Loved One has Dementia”

This brochure was originally designed and produced by the North Carolina Division of Aging and Adult Services (NCDAAS) in conjunction with the Joseph and Kathleen Bryan Alzheimer’s Disease Research Center through the U.S. Administration on Aging grant #90AZ2246. It was revised in August 2008 by NCDAAS through grant #90AZ2782 in conjunction with the Joseph and Kathleen Bryan Alzheimer’s Disease Research Center, Alzheimer’s Association – Eastern NC Chapter, Duke Aging Center Family Support Program and Positive Approach, LLC. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration on Aging policy.

Distributed by:
Alzheimer’s Disease Education and Referral Center
1-800-438-4380
www.nia.nih.gov/alzheimers
adear@nia.nih.gov

National Institute on Aging
National Institutes of Health
U.S. Department of Health and Human Services

Citation

https://www.nia.nih.gov/alzheimers/publication/hospitalization-happens

National Institute on Aging

 

Exercise Programs for People with Dementia

Cochrane Database Syst Rev. 2015 Apr 15;4:CD006489. doi: 10.1002/14651858.CD006489.pub4.

Exercise programs for people with dementia.

Forbes D1, Forbes SC, Blake CM, Thiessen EJ, Forbes S.

Abstract

This is an update of our previous 2013 review. Several recent trials and systematic reviews of the impact of exercise on people withdementia are reporting promising findings.

Objectives

Primary objective

Do exercise programs for older people with dementia improve their cognition, activities of daily living (ADLs), neuropsychiatric symptoms, depression, and mortality?

Secondary objectives

Do exercise programs for older people with dementia have an indirect impact on family caregivers’ burden, quality of life, and mortality?Do exercise programs for older people with dementia reduce the use of healthcare services (e.g. visits to the emergency department) by participants and their family caregivers?

Search Methods

We identified trials for inclusion in the review by searching ALOIS (www.medicine.ox.ac.uk/alois), the Cochrane Dementia and Cognitive Improvement Group’s Specialised Register, on 4 September 2011, on 13 August 2012, and again on 3 October 2013.

Selection Criteria

In this review, we included randomized controlled trials in which older people, diagnosed with dementia, were allocated either to exercise programs or to control groups (usual care or social contact/activities) with the aim of improving cognition, ADLs, neuropsychiatric symptoms, depression, and mortality. Secondary outcomes related to the family caregiver(s) and included caregiver burden, quality of life, mortality, and use of healthcare services.

Data Collection and Analysis

Independently, at least two authors assessed the retrieved articles for inclusion, assessed methodological quality, and extracted data. We analysed data for summary effects.

We calculated mean differences or standardized mean difference (SMD) for continuous data, and synthesized data for each outcome using a fixed-effect model, unless there was substantial heterogeneity between studies, when we used a random-effects model.

We planned to explore heterogeneity in relation to severity and type of dementia, and type, frequency, and duration of exercise program. We also evaluated adverse events.

Results

Seventeen trials with 1067 participants met the inclusion criteria. However, the required data from three included trials and some of the data from a fourth trial were not published and not made available. The included trials were highly heterogeneous in terms of subtype and severity of participants’ dementia, and type, duration, and frequency of exercise. Only two trials included participants living at home.

Our meta-analysis revealed that there was no clear evidence of benefit from exercise on cognitive functioning. The estimated standardized mean difference between exercise and control groups was 0.43 (95% CI -0.05 to 0.92, P value 0.08; 9 studies, 409 participants). There was very substantial heterogeneity in this analysis (I² value 80%), most of which we were unable to explain, and we rated the quality of this evidence as very low.

We found a benefit of exercise programs on the ability of people with dementia to perform ADLs in six trials with 289 participants. The estimated standardized mean difference between exercise and control groups was 0.68 (95% CI 0.08 to 1.27, P value 0.02). However, again we observed considerable unexplained heterogeneity (I² value 77%) in this meta-analysis, and we rated the quality of this evidence as very low.

This means that there is a need for caution in interpreting these findings.In further analyses, in one trial we found that the burden experienced by informal caregivers providing care in the home may be reduced when they supervise the participation of the family member with dementia in an exercise program.

The mean difference between exercise and control groups was -15.30 (95% CI -24.73 to -5.87; 1 trial, 40 participants; P value 0.001).

There was no apparent risk of bias in this study. In addition, there was no clear evidence of benefit from exercise on neuropsychiatric symptoms (MD -0.60, 95% CI -4.22 to 3.02; 1 trial, 110 participants; P value .0.75), or depression (SMD 0.14, 95% CI -0.07 to 0.36; 5 trials, 341 participants; P value 0.16).

We could not examine the remaining outcomes, quality of life, mortality, and healthcare costs, as either the appropriate data were not reported, or we did not retrieve trials that examined these outcomes.

Conclusions

There is promising evidence that exercise programs may improve the ability to perform ADLs in people with dementia, although some caution is advised in interpreting these findings.

The review revealed no evidence of benefit from exercise on cognition, neuropsychiatric symptoms, or depression. There was little or no evidence regarding the remaining outcomes of interest (i.e., mortality, caregiver burden, caregiver quality of life, caregiver mortality, and use of healthcare services).

Citation

 

Music Therapy and Alzheimer’s Disease

Dementia (London). 2013 Sep 1;12(5):619-34. doi: 10.1177/1471301212438290. Epub 2012 Mar 28.

An overview of the use of music therapy in the context of Alzheimer’s disease: A report of a French expert group.

Guetin SCharras KBerard AArbus CBerthelon PBlanc FBlayac JPBonte FBouceffa JPClement SDucourneau GGzil FLaeng N,Lecourt ELedoux SPlatel HThomas-Anterion CTouchon JVrait FXLeger JM.

Abstract

Objectives

The aim of this overview is to present the developments of music therapy in France, its techniques, mechanisms and principal indications, mainly in the context of Alzheimer’s disease.

Methods

An international review of the literature on music therapy applied to Alzheimer’s disease was conducted using the principal scientific search engines. A work group of experts in music therapy and psychosocial techniques then considered the different points highlighted in the review of literature and discussed them.

Results and Discussion

Clinical and neurophysiological studies have enlightened some positive benefits of music in providing support for people with Alzheimer’s disease or related disorders. Music therapy acts mainly through emotional and psycho-physiological pathways. It includes a series of techniques that can respond to targeted therapeutic objectives. Some studies have shown that music therapy reduces anxiety, alleviates periods of depression and aggressive behaviour and thus significantly improves mood, communication and autonomy of patients.

Conclusion

Psychosocial interventions, such as music therapy, can contribute to maintain or rehabilitate functional cognitive and sensory abilities, as well as emotional and social skills and to reduce the severity of some behavioural disorders.

Citation

http://www.ncbi.nlm.nih.gov/pubmed/24337333

National Center for Biotechnology Information, U.S. National Library of Medicine

 

Blissing Out: 10 Relaxation Techniques to Reduce Stress on-the-Spot

(WebMD) If your hectic lifestyle has got you down, experts say relaxation techniques can bring you back into balance — some in 5 minutes or less.

Chances are, your ever-growing to-do list doesn’t include one very important task: Relax. But managing stress is key to staying healthy. Think you don’t have time to unwind? Each of these stress-relieving tips can get you from OMG to om in less than 15 minutes.

1. Meditate

A few minutes of practice per day can help ease anxiety.

“Research suggests that daily meditation may alter the brain’s neural pathways, making you more resilient to stress,” says psychologist Robbie Maller Hartman, PhD, a Chicago health and wellness coach.

The process can be simple. Sit up straight with both feet on the floor. Close your eyes. Focus your attention on reciting — out loud or silently — a positive mantra such as “I feel at peace” or “I love myself.” Place one hand on your belly to synch the mantra with your breaths. Let any distracting thoughts float by like clouds.

2. Breathe Deeply

Give yourself a 5-minute break from whatever is bothering you and focus instead on your breathing. Sit up straight, eyes closed, with a hand on your belly. Slowly inhale through your nose, feeling the breath start in your abdomen and work its way to the top of your head. Reverse the process as you exhale through your mouth.

“Deep breathing counters the effects of stress by slowing the heart rate and lowering blood pressure,”

says psychologist Judith Tutin, PhD, a certified life coach in Rome, Ga.

3. Be Present

You rush through dinner, hurry to your next appointment, race to finish one more thing on your agenda. Now try something different: Slow down.

“Take 5 minutes and focus on only one behavior with awareness,”

says Tutin. Notice how the air feels on your face when you’re walking and how your feet feel hitting the ground. Enjoy the texture and taste of each bite of food as you slowly chew. When you spend time in the moment and focus on your senses, you should feel the tension leave your body.

4. Reach Out

A good social support system is one of the most important resources for dealing with stress. Talking to others — preferably face-to-face or at least on the phone — is a great way to better manage whatever is stressing you out.

5. Tune In to Your Body

Mentally scan your body to get a sense of how stress affects it each day. Lie on your back or sit with your feet on the floor. Start at your toes and work your way up to your scalp, noticing how your body feels.

“Simply be aware of places you feel tight or loose without trying to change anything,”

says Tutin. For 1 to 2 minutes, imagine each deep breath flowing to that body part. Repeat this process as you move your focus up your body, paying close attention to sensations you feel in each body part.

6. Decompress

Place a warm heat wrap around your neck and shoulders for 10 minutes. Close your eyes and relax your face, neck, upper chest, and back muscles. Remove the wrap and use a tennis ball or foam roller to massage away tension.

“Place the ball between your back and the wall. Lean into the ball and hold gentle pressure for up to 15 seconds. Then move the ball to another spot and apply pressure,”

says Cathy Benninger, a nurse at The Ohio State University Wexner Medical Center in Columbus.

7. Laugh Out Loud

A good belly laugh doesn’t just lighten the load mentally. It lowers cortisol, your body’s stress hormone, while increasing brain chemicals called endorphins that boost your mood. Lighten up by tuning in to your favorite sitcom or video, reading the comics, or chatting with someone who makes you smile.

8. Crank Up the Tunes

Research shows that listening to soothing music can lower blood pressure, heart rate, and anxiety.

“Create a playlist of songs or nature sounds (the ocean, a bubbling brook, birds chirping) and allow your mind to focus on the different melodies, instruments, or singers in the piece,” suggests Benninger.

You also can blow off steam by rocking out to more upbeat tunes — or singing at the top of your lungs!

9. Get Moving

You don’t have to run in order to get a runner’s high. All forms of exercise — from yoga to walking — can ease depression and anxiety by helping the brain release feel-good chemicals and by giving your body a chance to practice dealing with stress. You can go for a quick walk around the block, take the stairs up and down a few flights, or do some stretching exercises like head rolls and shoulder shrugs.

10. Be Grateful

Keep a gratitude journal or several (stash one by your bed, keep one in your purse, and one at work) to help you remember all the things that are good in your life.

“Being grateful for your blessings cancels out negative thoughts and worries,” says Joni Emmerling, a wellness coach in Greenville, N.C.

Use these journals to savor good experiences like a child’s smile, a sunshine-filled day, and good health. Don’t forget to celebrate accomplishments like mastering a new task at work or a new hobby. When you start feeling stressed, spend a few minutes looking through your notes to remind yourself what really matters.

Citation

By Jeannette Moninger

http://www.webmd.com/balance/guide/health-and-balance-manage-stress

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