I understand why Alzheimer's caregivers
can be so thoroughly
disconcerted day after day.
We don't know how long.
We don't know what is coming next.
We feel like we are walking
"up the down staircase"
each and every day.

Bob DeMarco

myhomehelper - award winning memory aid

myhomehelper - award winning memory aid

what is myhomehelper?

myhomehelper is the innovative new memory aid developed from the personal experience of assisting a family member living with dementia.

It is a 9.7 inch on-line digital display, specifically designed to support people living with memory impairment and learning difficulties in their own homes. myhomehelper helps to reduce anxiety and isolation and gives peace of mind, reassurance and confidence to family and carers.

    Calendar Clock
    Timed and Random Reminders
    News Headlines
    Auto answer Skype Video Calling
    Facebook Messages
    Night Mode
    Multi User Access
    SMS and e-mail system to carers
    Multi Language

Developed from ideas and feedback given from service users and carers in trials of the system over the last 3 years, the user centred design ensures that it is ideal for people with no computer or IT experience and requires no interaction from the user for it to work.
how does it work?

myhomehelper comes pre-installed on a tablet computer that has been configured to run the system optimally from the moment that you turn it on.

A simple set-up system can be accessed by family, friends and carers to tailor the system to suit individual needs via the myhomehelper website, from anywhere that has access to an internet connection - be that at home, work or even on holiday.

It has been designed as an "always on" system and once set-up only needs to be maintained when new activities, appointments or photos etc need adding. The end user does not have to do anything but look at the display occasionally to benefit from it - there is no other interaction required.


how much does it cost?

myhomehelper costs £333.33 (ex VAT) for the first year and then either £7.49 per month or £77.88 per year thereafter to continue using the on-line features.

The price includes:

    a tablet computer configured for myhomehelper
    12 month myhomehelper subscription
    tablet stand
    18 month warranty
    on-line technical support

New US Goverment organization, the Administration for Community Living (ACL). WE should be able to live at home

About ACL

All Americans—including people with disabilities and older adults—should be able to live at home with the supports they need, participating in communities that value their contributions. To help meet these needs, the U.S. Department of Health and Human Services (HHS) created a new organization, the Administration for Community Living (ACL).
ACL brings together the efforts and achievements of the Administration on Aging, the Administration on Intellectual and Developmental Disabilities, and the HHS Office on Disability to serve as the Federal agency responsible for increasing access to community supports, while focusing attention and resources on the unique needs of older Americans and people with disabilities across the lifespan.

A caregiver is anyone who provides help to another person in need. In this section, we provide links to a wealth of information on the Internet designed to assist family members and caregivers.
  • Alzheimers.gov
    This site is the government’s resource for Alzheimer&rsqup;s and related dementias.
  • Alzheimer’s & Dementia Caregiver Center External Web Site Policy
    This site provides information about day-to-day help and services in your community; getting support; or preparing for the future.
  • ARCH National Respite Network External Web Site Policy
    The ARCH National Respite Network and Resource Center provides resources to help families locate respite and crisis care services.
  • Family Caregiver Alliance External Web Site Policy
    The site contains a wide array of publications and services based on caregiver needs, including a Family Care Navigator.
  • National Alliance for Caregiving External Web Site Policy
    The site contains publications and resources for caregivers, including the Family Care Resource Connection, where you can find reviews and ratings on over 1,000 books, videos, Web sites, and other materials on caregiving.
  • Caregiver Action Network External Web Site Policy
    The site offers a virtual library of information and educational materials for family caregivers.
  • eXtension External Web Site Policy
    This website was created by the United States Department of Agriculture (USDA), Cooperative Extension System. Here, caregivers and advocates can access a wide range of information and materials designed to help them learn about and provide supportive services to family and relative caregivers. Topics include disaster preparedness, military families, grandparents raising grandchildren, housing, and nutrition.
  • HHS Office of Women’s Health (OWH)
    The OWH website provides an extensive list of links of interest to caregivers.

Older Adults

  • Alzheimers.gov – This site is the government's resource for Alzheimer's and related dementias.
  • Eldercare Locator – The ACL Eldercare Locator is a website and call center that links you to state and local agencies on aging and community-based organizations that serve older adults and their caregivers.
  • Check for Benefits External Web Site Policy – The BenefitsCheckUp Website helps consumers find benefits programs that help them pay for prescription drugs, health care, rent, utilities, and other needs. The BenefitsCheckUp Website includes information from more than 1,650 public and private benefits programs from all 50 states and DC.
  • Find Helpful Publications and Website Resources – A part of the Eldercare Locator Website, here you will find useful topic-specific resources for older adults, caregivers and aging professionals.
  • Long-Term Care Planning – Long-term care includes a variety of services and supports to meet health or personal care needs over an extended period of time. The National Clearinghouse for Long-Term Care Information Website provides information and resources to help individuals plan for future long-term care.

Understanding theDementia Experience

by Jennifer Ghent-Fuller, B.A., R.N., M.Sc.N.

Smashwords Edition 2012

This ebook is licensed for your personal enjoyment. This free ebook may be given away to other people. If you would like to share this book with another person, please send the entire book only, not a partial sampling. This book may not be sold except if printed on paper in its entirety and only for the exact cost of the materials only. Thank you for respecting the hard work of this author. Further information about sharing is in 'Note Written in 2002.'

Copyright Jennifer Ghent-Fuller 2002
Thoughtful Dementia Care TM
ISBN: 978-0-9881678-2-7

Coach Broyle's Playbook alzheimersplaybook.pdf


Loads PDF file for reading on your browser now:
This “Playbook for Alzheimer’s Caregivers”
is a social model, not a medical model (doing things with
her, not for her). It was written to give you practical tips
to help guide you in taking care of your loved one with Alzheimer’s disease

Frank Broyles
University of Arkansas,
Razorback Athletic Director Emeritus

Available from Amazon | Coach Broyles' Playbook for Alzheimer's Caregivers: A Practical Tips Guide

Alzheimer's and Dementia: Global Resources

Alzheimer's and Dementia: Global Resources: Worldwide, at least 44 million people are living with dementia. To serve this global population, as well as their families and caregivers, the Alzheimer's Association has translated its most popular and unique online resources and tools.

Jean Dickinson
Vice President of Marketing & Communications at Alzheimer's Association, California Southland Chapter
It's time to celebrate. Our group is now 20,000 members strong. This includes many members from around the world. It's also indicative of the growing interest in Alzheimer's disease and related dementias and the increasing number of people affected each day.

The Alzheimer's Association has "gone global," too. Please take a moment to visit our new Web portal at http://www.alz.org/global/ It has information in many languages along with in-country resources. We encourage you to link to us!

Alzheimer's & Dementia: Global Resources
    Country-specific Alzheimer's statistics, research plans and local support services.
    Educational content covering risk factors, symptoms, diagnosis and treatment.
    An overview of the Alzheimer's Association role in funding critical dementia research.
    An interactive brain tour.
    A call to action for the global community to join the cause.

Content can be accessed by country or language.

Gina Shaw, It Takes a Team: How to coordinate your loved one's care—and take care of yourself in the process. -- American Academy of Neurology

It Takes a Team: How to coordinate your loved one's care—and take care of yourself in the process. -- American Academy of Neurology
 You may have been thrust into the role of caregiver for a loved one with a neurologic condition suddenly—perhaps as the result of a traumatic brain injury or stroke. Or it may have happened more slowly, with the progression of multiple sclerosis, Alzheimer's disease, or Parkinson's disease. Either way, you will need a team of experts to help you coordinate your loved one's care. These professionals can be of enormous help, but sometimes just figuring out who is involved in your loved one's care, and what they do, can seem insurmountable.

To help you, we've identified some of the key healthcare professionals involved in caring for someone with a serious...... condition. Here's how you can work with them.

ALZ Connected - Alzheimer's Association

ALZ Connected - Alzheimer's Association
Here's a
PDF brochure from the Alzheimer's Association that describes/discusses
legal planning and documents for the care of persons with AD/dementia.
It includes discussions on POAs and guardianships.


The Validity of Online Contracts

The Validity of Online Contracts      

 It is basic, black letter, first week in law school law
that in order to have a valid contract, there must be at least 3
essential elements.   These elements are an offer, acceptance and

        The concept of “offer” is simple: a web site offers goods,
services, software, membership in the site etc. etc. and that offer is
contained, for the sake of this article, in some sort of agreement
posted on the site.

        “Consideration” for the sake of extreme simplicity and
because it is not germane to this article, involves something of value
being exchanged between the parties.  Let’s just leave it at that.

        This article deals with how, in the context of the
Internet, the element of “acceptance” can be satisfied so that, assuming
the validity of a given offer and a valid consideration, a binding
obligation can be created.

Family Caregiver Stress Relief | Caregiver Stress

Family Caregiver Stress Relief | Caregiver Stress

 There are ways to make personal care tasks easier, though. As a senior
care professional, you’ve likely learned to overcome those awkward
situations with your patients as well. Here are seven suggestions you
can recommend to family caregivers. {end quote}

Ask Dr. Amy

Dr. Amy D'Aprix, MSW, PhD, CSA, is  Executive Director of the DAI Foundation on Caregiving.

Dr. D'Aprix's focus on providing service for seniors and their caregivers started at the State University of New York at Albany, where she concentrated on Aging Studies in both her BS and MSW programs. During her doctorial program at Case Western Reserve University in Cleveland Ohio, Dr. D'Aprix received a Doctoral Fellowship from the Mandel Alzheimer's Caregiving Institute. In addition to her university degrees, Dr. D'Aprix holds the designation of Certified Senior Advisor and is currently on the International Faculty for the Society of Certified Senior Advisors and the Canadian Academy of Senior Advisors.

Ten Things to Think About: Lawsuits - FindLaw

Ten Things to Think About: Lawsuits - FindLaw

are serious business, requiring plenty of time, energy, and money. Here
are some things to consider if you are involved in litigation - See
more at:
are serious business, requiring plenty of time, energy, and money. Here
are some things to consider if you are involved in litigation - See
more at:

are serious business, requiring plenty of time, energy, and money. Here
are some things to consider if you are involved in litigation. - See
more at:
are serious business, requiring plenty of time, energy, and money. Here
are some things to consider if you are involved in litigation. - See
more at:
are serious business, requiring plenty of time, energy, and money. Here
are some things to consider if you are involved in litigation. - See
more at:
are serious business, requiring plenty of time, energy, and money. Here
are some things to consider if you are involved in litigation. - See
more at:
are serious business, requiring plenty of time, energy, and money. Here
are some things to consider if you are involved in litigation. - See
more at:
are serious business, requiring plenty of time, energy, and money. Here
are some things to consider if you are involved in litigation - See
more at:
are serious business, requiring plenty of time, energy, and money. Here
are some things to consider if you are involved in litigation - See
more at:

IKOR of Greater Columbus: How to choose an aide/caregiver/unlicensed personnel

  • Who will be providing oversight? 
  • Who will conduct the background search to make sure this person does not have a criminal past? 
  • What happens if this person gets injured on the job? Are YOU willing
    to pay for workers comp insurance so the person does not try to sue you
    or your loved one if injured while caregiving? 
  • Will you document the care for tax reasons? Bills can add up quickly
    and can make a big difference during tax time if you can write off the
    expenses, or not write them off if you are not tracking expenses. 
  • What about other insurance and bonds to protect your loved one that is provided by reputable agencies. 
  • Again- not all agencies have these protections in place, make sure you do your due diligence!

Seniors staying in their homes more instead of moving to assisted living centers

Seniors staying in their homes more instead of moving to assisted living centers

"Samah Assad/SAssad@MorningJournal.com

 Samah covers Oberlin, Westlake, Sheffield, and crime and cops. She loves all things Cleveland. Reach the author at sassad@morningjournal.com
or follow Samah on Twitter: @SAssadMJ.

John Schlotterer, left, of Elyria has been the full-time primary
caregiver for his 85-year-old mother Helen. They have recently begun
utilizing the Home Instead Senior Care office that serves Lorain County"

 Karin Wolff, a registered nurse and owner of the Home Instead Senior
Care office, which helps seniors and their caregivers in Lorain County
prepare older adults for aging, said 85 percent of seniors have not
educated themselves as to dangers they could face in the home. The
center’s caregivers primarily visit homes and provide transportation,
housekeeping and personal care for seniors.

A Guide to Durable Medical Equipment And Medical Supplies - AgingCare.com

A Guide to Durable Medical Equipment And Medical Supplies - AgingCare.com

Caregiver Resilience: What It Is and Why It Matters for Family Caregivers | Griswold

Caregiver Resilience: What It Is and Why It Matters for Family Caregivers | Griswold

In Resilience, Steven Southwick and Dennis Charney (2012) outline ten ways that resilient people tend to cope with stress.  The good news is that these can be learned and developed.
1.      Realistic Optimism: Viewing life in a hopeful,
confident way. Anticipating a bright future.  Believing that good things
are coming and hard work will yield success.  Realistic optimism is the
foundation of resilience, and fuels each of the following resilience
2.    Social Support: Connecting with other people by
seeking out and accepting help that is offered, and also by giving help
to those in need.
3.   Facing Fear: Using thoughts and behaviors to triumph
over fear.  Acting in spite of fear to accomplish goals and become
4.   Religion and Spirituality: Turning to God, or a Higher
Power.  Engaging in formal religious services or private spiritual
practices.  Finding inspiration in nature or the arts.
5.   Meaning, Purpose and Growth:  Finding strength and
courage by pursuing an inspiring goal.  Using adversity as a catalyst
for growth.  Actively serving a purpose that is greater than
self-interest.  Transcending traumatic experiences by helping others who
have been traumatized.  Choosing to be a victor, rather than a victim.  
6.  Moral compass/Altruism: Engaging in right actions and avoiding doing wrong. Thinking of and serving others.
7.   Role models: Imitating people who demonstrate positive
ways of handling adversity.  Identifying real people, living or dead;
fictional characters, famous individuals or historic figures.
 Replicating small aspects of their behavior that have led to positive,
desired outcomes.
8.  Training: Improve physical health and preventing or
diminishing the effects of chronic illnesses by keeping the body fit.
 Mastering physical challenges to also improve mental health and
emotional regulation.   
9.  Brain fitness: Focusing thoughts, and challenging the
mind so the intellect is sharp and continues to grow.  Regulating
emotions to eliminate feelings that undermine effective coping.
10.  Flexibility: Employing a variety of mental and
emotional strategies to handle adversity; accept what can’t be changed;
learn from failure; transform negative energy into positive energy; and
find opportunity and meaning in adversity.

link should be shared by Alzheimer's caregivers, among their family and friends, in support groups, and with the over 150 million U.S. citizens that are touched by Alzheimer's and struggling to understand the disease.

How Alzheimer's Destroys the Brain -- Video | Alzheimer's Reading Room

 By Bob DeMarco

+Alzheimer's Reading Room

How Alzheimer's Destroys the Brain -- Video
I would like to see every single member of the Collective Brain of the Alzheimer's Reading Room share the link to this article with the entire Alzheimer's community.

The link should be shared by Alzheimer's caregivers, among their
family and friends, in support groups, and with the over 150 million
U.S. citizens that are touched by Alzheimer's and struggling to
understand the disease.

Anyone, regardless of stature or tenure in the Alzheimer's Community will benefit from watching this video.

A good understanding of how Alzheimer's effects the hippocampus in the
brain, and how plagues and tangles spread throughout the brain and cause
the various stages of Alzheimer's is important for anyone that wants to
deal effectively with an Alzheimer's patient.

Gatekeepers | Safety Gates | Stair Gates | Customized, Removable Safety Gates - Gatekeepers, DeForest, WI

Gatekeepers | Safety Gates | Stair Gates | Customized, Removable Safety Gates - Gatekeepers, DeForest, WI

Gatekeepers was born out of the need to protect our child with a
durable and completely reliable baby gate. But over the years, as our
company has grown, we’ve realized there are several different reasons to
install a safety gate in a home or business.  In addition to Baby Gates and Pet Gates
we’ve found that caretakers of older adults or children with special
needs find safety gates of great benefit. We also make gates to protect
little ones from fireplaces, provide containment on decks and for
businesses looking to restrict access to certain areas.

Not only are our gates absolutely beautiful, but most importantly, our gates are safe. Our popular Swing Gate has successfully passed the ASTM F1004 Performance Test
and has been pressure tested to 500 pounds.  Too many safety gates
offer little more than a visual deterrent, while Gatekeepers safety
gates are made of solid wood, securely mounted and feature sturdy

Every Gatekeepers specialty safety gate offers the following features:

  • Custom-crafted to fit any size stairway, door opening or hallway
  • Mounted with safe, strong, minimally invasive hardware
  • Innovative slide rail system allows for easy removal
  • Unique latches that offer a level of difficulty for a child, yet are simple enough for an adult to open with one hand
  • Available in maple, oak or cherry wood with unlimited Sherwin Williams stain/paint colors
Not only will you be impressed with our products, you’ll also appreciate the service and support Gatekeepers provides. From initial measurements and consultation to final installation of your new gate, we guarantee your satisfaction.

Elder Community Care | Marlborough, MA 01752

Elder Community Care | Marlborough, MA 01752

Elder Community Care a team of trained social workers & mental health clinicians

Elder Community Care is a network of agencies working together to serve elders in their own homes. We provide comprehensive assessment and counseling services to elders and their families in Metrowest. We provide comprehensive assessment, counseling and referral services.

Need a Patient Advocate?

Do I Need a Patient Advocate by Barbara Hales, M.D.
June 30, 2014

A patient advocate is someone who works for the benefit of patients and their families”. “A patient advocate can lend a helping hand when you need it most...”

“Individuals need an unbiased person to speak on their behalf while providing guidance, friendship and emotional support. Advocates help make choices and empower patients with access to relevant information.”

*Patient Advocates/Navigators – The responsibilities of a patient advocate are many and can include:
Medication reviews and coordinating various drugs
Explaining diagnosis and treatment options
Liaise between all the specialists that the patient is seeing so they know what was diagnosed, which treatments were given, and which tests were done or are pending
Assistance in monitoring in-hospital
Medical record reviews
Accompaniment to doctor’s appointments
Aiding in comprehension for the patient

*Health care Mediation and Conflict Resolution – A health care mediator seeks to facilitate an agreement between all the involved stakeholders, i.e. various family members, medical staff and friends.

*Shared Decision Makers 
*Health Exchange/Marketplace Navigators 
*Medical Bills and Claim Reviewers.

*Senior/Legal Advocates 
*Statutory Advocacy 
*Hospital Patient Advocates or Representatives – Hired by the hospital

*Health Coaches –

Patient advocates work for:

Hospitals – serving the patients while they are admitted
Social Service Agencies – for client outreach
Insurance Companies
Private/Freelance – serving the clients themselves

Read full article:

Hospice Drugs are Covered under Medicare Part A NOT Part D

Hospice Drugs are Covered under Medicare Part A NOT Part D
Hospice programs must provide individuals under
hospice care with drugs and biologicals related to the palliation and
symptom management of the terminal illness as defined in the hospice
plan of care. The only drugs covered by the hospice program are those
used primarily for relief of pain and symptom control related to the
individual‘s terminal illness. However, because hospice care is a
Medicare Part A benefit, the drugs provided by the hospice and covered
under the Medicare per-diem payment to the hospice program are not covered under Part D.

Hospice programs are specified in section 1861(dd) of the Social Security Act and in Federal regulations at Part 418.

DIY Feces And Diarrhea Stain Removal from carpet and Upholstery

Clean off the feces or diarrhea, or urine, as possible.

For a diarrhea stain cover with an absorbent, such as cornstarch or baking soda and let it soak in
Vacuum up the cornstarch or baking soda.You may need to repeat this step.

Make a solution of  cool water,  a little dishwashing liquid, and white vinegar.

Using this attack the stain.

Repeat  until the stains are removed.
Rinse carefully with plain cold water then dry.

If this does not completely remove the stain apply 3% hydrogen peroxide to the stained. Test this stain removal method in an inconspicuous area to make sure it does not cause harm.

Carefully rinse with plain cold water {cloth and sponge on upholstery} then dry.

Stop Digging By JoAnn Kunkle

"If You Find Yourself in a Hole, Stop Digging">
The quote is from Will Rogers, a simple talking
philosopher, who just asked us to look honestly at
ourselves, look around and appreciate what we see.

In preparing for a community course on interacting with
a dependent loved one to keep them stimulated and
positive, I was struck by the many technical supports
available and the real lack of hands on, relationship
builders for caregivers and the person they love.


JoAnn Kunkle
is a Volunteer Coordinator for the United Methodist
Homes Elizabeth Church Campus in Binghamton, New York.
She holds BS in Sociology, and graduated from SUNY at
Brockport.  She is a mother of two, grandmother of
nine and wife to one very wonderful man. She has been a
Social Worker at a Children’s’ Home, an Information
Specialist in a library and a Director of Social
Services. You can reach JoAnn at


All-Night Care for Alzheimer’s Restless Minds

Mr. Pomeranz at the , Hebrew Home at Riverdale, Took the day program and ran it at night. The activities mirror those done during the day: arts, crafts, exercise, and holistic remedies like meditation and pet therapy.

{quote} Participants are fetched from their homes by vans and spend 7 p.m. to 7 a.m. painting, potting plants, dancing and talking — or, for those immobilized by their disease, relaxing amid music, massage and twinkling lights. The patients rest as they need, for a few minutes or a few hours, and return home the next morning fed, showered and, usually, tuckered out. {end quote}

It takes just one person to encourage setting up Night-Care respite for those with dementia.

If YOU are using or involved with a assisted living facility, senior services, day-care, caregivers, senior center, or area agency discuss Night Care programs with your peers.

Sensible Coaching for Elderly Parents' Children | Endless Legacy

Sensible Coaching for Elderly Parents' Children | Endless Legacy

Is This You?

Worried Couple - Composite2

  • Are you suddenly burdened with care issues or other decisions for your elderly or aging parents?
  • Did you just receive that totally
    unexpected, out-of-the-blue phone call from some authority (doctor,
    police officer, emergency operator) advising you of the immediate help
    your aging elderly parent needs?



ACM Care 5 Tips to Dementia Proof Your Home

 Electronics with Automatic Shut-off. These are great for home
safety in general, but of extra importance when someone in the home has
memory loss. Electronics and appliance manufacturers are incorporating
an automatic shut-off feature in to an increasing number of products
ranging from humidifiers to Christmas tree lights. The ones you might
find most useful for a loved one with dementia include a curling iron,
iron, and coffee pot. It they still cook, a product called CookStop can
actually turn off a pot or pan that they have left on the stove too

How Joint Bank Accounts and Property Affect Medicaid Eligibility - AgingCare.com

How Joint Bank Accounts and Property Affect Medicaid Eligibility - AgingCare.com

When considering trying to qualify for Medicaid, many questions about jointly-held assets arise:

Should I re-title my house from joint names with my spouse into my name alone?

If I add my son's name to my bank account, will that affect my ability to qualify for Medicaid?

What do POD, TOD and JTWROS mean?

the purposes of Medicaid, there are two different instances when the
exact way an asset is titled can affect a family's finances: when a
family member applies for Medicaid, and following the death of a family
member who was covered by Medicaid.

4 Essential Caregiving Lessons from Home Care Nurses - AgingCare.com

4 Essential Caregiving Lessons from Home Care Nurses - AgingCare.com

Working in home care enables you to see certain elements of an
elder's life that may fly under the radars of their doctor, their
friends and, many times, even their closest family members.

people caring for your loved one—home health aides, registered nurses,
social workers, etc.—witness some of that individual's most vulnerable
moments as they handle real-time critical issues related to a senior's
health and well-being

Things You Can and Can't Do With POA - AgingCare.com

Things You Can and Can't Do With POA - AgingCare.com

Codependency: Caretaking vs. Caregiving

In a Caregiver Support Forum discussion group the question was asked: 
How can I begin to think positive about being a caretaker?

I came across Elizabeth Kupferman a counselor in Southlake, Texas (Dallas/Fort Worth area) dedicated to helping women overcome depression, grief, and anxiety so they can find happiness and achieve their dreams.

She has an excellent site with great information,which I quote  (material quoted was authored by Elizabeth Kupferman ):

{begin quote}
Codependency: Caretaking vs. Caregiving

Codependency is a group of behaviors that cause us to have unhealthy relationships.  Caretaking is one of those behaviors, and what we want is to replace caretaking with caregiving.  There are crucial differences between caretaking and caregiving and you will notice: the healthier and happier your relationship, the more you are caregiving rather than caretaking.

I view caretaking and caregiving on a continuum.  We usually aren’t doing both at the same time.  The goal is to do as much caregiving as we can and to decrease our caretaking as much as we can.  Caretaking is a dysfunctional, learned behavior that can be changed.  We want to change so we can experience more peace, more contentment and more fulfilling relationships.  The people in your life may resist your healthier actions, but modeling caregiving is a huge gift you are giving to your loved ones

Here are some key differences between caretaking and caregiving:
  • Caretaking feels stressful, exhausting and frustrating.  Caregiving feels right and feels like love.  It re-energizes and inspires you.
  • Caretaking crosses boundaries.  Caregiving honors them.
  • Caretaking takes from the recepient or gives with strings attached; caregiving gives freely.
  • Caretakers don’t practice self-care because they mistakenly believe it is a selfish act.
  • Caregivers practice self-care unabashedly because they know that keeping themselves happy enables them to be of service to others.
  • Caretakers worry; caregivers take action and solve problems.
  • Caretakers think they know what’s best for others; caregivers only know what’s best for themselves.
  • Caretakers don’t trust others’ abilities to care for themselves, caregivers trust others enough to allow them to activate their own inner guidance and problem solving capabilities.
  • Caretaking creates anxiety and/or depression in the caretaker.  Caregiving decreases anxiety and/or depression in the caregiver.
  • Caretakers tend to attract needy people.  Caregivers tend to attract healthy people.  (Hint:  We tend to attract people who are slightly above or below our own level of mental health).
  • Caretakers tend to be judgmental; caregivers don’t see the logic in judging others and practice a “live and let live attitude.”
  • Caretakers start fixing when a problem arises for someone else; caregivers empathize fully, letting the other person know they are not alone and lovingly asks, “What are you going to do about that.”
  • Caretakers  start fixing when a problem arises; caregivers respectfully wait to be asked to help.
  • Caretakers tend to be dramatic in their caretaking and focus on the problem; caregivers can create dramatic results by focusing on the solutions.
  • Caretakers us the word “You” a lot and Caregivers say “I” more.
As with changing any behavior, becoming aware of it is the first step.  Watch yourself next time you are with someone and ask yourself where you fall on the continuum.  It will take some work to change and you may experience some resistance and fear in the process — but what is on the other side is well worth the struggles of transformation.

I recommend the work of Melody Beattie who is a groundbreaker in codependency education.  If you find yourself in relationships with people who have addictions or if you struggle with your own addictions, I recommend Codependent No More:  How to Stop Controlling Others and Start Caring for Yourself (also Al-Anon, which is a 12 step group).  If you aren’t in relationship with someone who has an addiction or if you do not suffer from an addiction, I recommend her new book The New Codependency:  Help and Guidance for Today’s Generation.”
Reference:  Beattie, Melody (1991).  Codependent No More:  How to Stop Controlling Others and Start Caring for Yourself.
{end quote}

Please note:
Elizabeth Kupferman is a counselor in Southlake, Texas 
the great information,which I was authored by Elizabeth Kupferman :

▶ Meet Teepa Snow - YouTube: must watch for caregivers

▶ Meet Teepa Snow - YouTube

Maggie Pheasant said: I completed three of Teepa's trainings - she is simply not to be missed if she comes to your area - make every effort to clear your calendar and attend, whether you are directly a care giver or know someone who is, you will learn a lot.

Nursing Home Costs Covered by Medicare and Medicaid - AgingCare.com

Nursing Home Costs Covered by Medicare and Medicaid - AgingCare.com:

Medicare coverage of nursing home costs

In order for Medicare to cover a person's nursing home stay, the person must:

Have been hospitalized for medically necessary inpatient hospital care for at least three, consecutive days, not counting the date of discharge
Be admitted to the nursing home within 30 days after the date of discharge from the hospital,
Require skilled nursing or rehab care on a daily basis for a condition for which the patient was hospitalized, and
Receive a physician's order that such care is needed.

Respecting Different Approaches to Caregiving is Important - AgingCare.com

Respecting Different Approaches to Caregiving is Important - AgingCare.com: Respecting Diverse Approaches to Caregiving is Important

There is no one-size-fits-all approach to caregiving.

Short of neglect or abuse of the care receiver, nearly every family caregiver must be free to make choices that work best for their unique situation. Even then, the available choices aren't always ideal.

You simply have to try and acknowledge what it really means to just do your best.

Tips for Coping with Symptoms/Alzheimer's and Sundowning | alzcompend.info

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Surprisingly, that's not an easy question to answer. Sundowning is a descriptive term rather than a diagnosis. Different researchers have different definitions -- which has complicated attempts to study the symptom, determine what causes it, and find ways to treat it.

Broadly speaking, sundowning is a cyclical increase in agitation (which may include restlessness, confusion, disorientation, wandering, searching, escape behaviors, tapping or banging, vocalization, combativeness, and/or hallucinations) that takes place at roughly the same time every day. Despite its name, and the wide-spread belief that sundowning occurs in the late afternoon and early evening, studies have found that the peak of sundowning activity is more likely to occur in the early- to mid-afternoon (e.g., around 1:00pm), while in some patients, it may occur late at night. It may even peak in the early morning in a fairly high percentage of patients.

For those of you struggling to cope with sundowning -- whenever it peaks -- take heart: many researchers have reported that it tends to occur in the middle stages of dementia, and to disappear as the dementia progresses.


Many researchers consider sundowning to be a type of agitation, called "spontaneous agitation", that is caused by two factors, i.e.:
(1) Confusion, over-stimulation, and fatigue during the day, which results in increased disorientation, restlessness, and insecurity at night. And
(2) Fear of the dark, perhaps because of the lack of familiar daytime noises and activity and the lack of visual cues. The loved one may not be able to see as well in the gathering dusk, and/or be disturbed by strange shadows or reflections in window glass.

Others consider it to be a type of sleep disturbance that is "characterized by nocturnal wandering and confusion". Sundowning and sleep disturbance may appear to be related to each other since a sleep disorder, such as sleep disordered breathing, can be associated with a daytime behavior disorder.

However, more recent studies have concluded that sundowning is a chronobiological phenomenon that is unrelated to sleep disturbances. It is thought to be caused by a disturbance in the normal circadian rhythms, i.e., the "internal clock". Human circadian rhythms are biological cycles of ~24 hours that include sleep/wake, body temperature, and melatonin secretion cycles. They are regulated, in large part, by the suprachiasmatic nucleus (SCN), a cluster of neurons in the anterior hypothalamus. The SCN deteriorates significantly in Alzheimer's disease, contributing to disruption of circadian rhythms.

Decreased exposure to bright light has been suggested as a factor that contributes to the disruption of the circadian clock in dementia patients. Bright light (≥2,000 lux) is one of the most powerful synchronizers of circadian rhythms and directly influences secretion of melatonin, sleep/wake patterns, and body temperature cycles. Young adults and healthy older people are, on average, exposed to one hour of bright light a day, whereas Alzheimer's patients living at home are exposed to only 30 minutes a day, and Alzheimer's patients living in nursing homes are typically exposed to little or no bright light above 2,000 lux and only 10-20 minutes a day to light above 1,000 lux. However, it should be noted that the circadian rhythm disturbances in frontotemporal dementia (FTD) patients differ significantly from those in Alzheimer's patients. For example, in one study, Alzheimer's patients showed increased nocturnal activity and a significant phase-delay in their rhythms of core-body temperature and activity compared with FTD patients (and controls); whereas the activity rhythm of FTD patients was highly fragmented and phase-advanced in comparison with controls and apparently uncoupled from the rhythm of core-body temperature. The implication is that environmental factors such as exposure to bright light could not have caused differences between the two groups of dementia patients, suggesting a neurobiological basis for the time-dependent changes in activity.

Some studies have found no clinical evidence for the existence of sundowning per se. Studies that monitored agitated behaviors throughout the 24-hour day have repeatedly found that roughly the same number of patients exhibited cyclical agitated behavior in the early morning as those exhibiting it in the late afternoon/early evening. One conclusion was that disruptive behaviors which occur in the evening simply are noticed and reported much more frequently because they have a greater impact on caregivers. By the end of the day, the caregivers (whether at home or in a nursing facility) are too tired and irritated to cope with the loved one's behaviors as easily and effectively as they could when they were fresh and rested, and are also likely to be distracted by shift changes, family returning home from work/school, and evening chores such as preparing/serving dinner. Although often noticed, the "sunrising" phenomenon has rarely been studied, in and of itself, since cyclical early morning agitation has been dismissed as a symptom of depression, which is often worse in the early morning. However, a study designed specifically to determine whether there is a correlation between "sunrising" and depression did not find one.


Reports of sundowning in Alzheimer's patients are typically in the 10 - 25% range, but have been as low as 2.4% and as high as 66%. Not surprisingly, the prevalence that is reported depends on the definition of "sundowning" that is used, and the type of population involved in the study (e.g., the type and level of dementia and the environment in which the patients live).


Conventional recommendations for treating sundowning behavior revolve around trying to establish "good sleep hygiene", a reflection of the widely-held belief that sundowning is a sleep disorder. However, there are a number of other approaches to consider, as well.

4.1. Is it really sundowning?

First, be sure that what you are observing actually is "sundowning". Is the behavior new and did it appear suddenly? Have the doctor check for infections (especially urinary tract infections, UTIs) and dehydration. Perhaps your loved one recently had a new stroke or was hurt in a fall. Flare-ups of chronic diseases such as diabetes or heart, liver, or kidney disease can also cause agitation or delirium.

Pain is undiagnosed or undertreated in a staggeringly high percentage of dementia patients, and is a major cause of agitation and sleeplessness. Could your loved one be suffering from arthritis, constipation, gastroesophageal reflux, or sitting all day in an uncomfortable position? Tools to help you evaluate whether your loved one is in pain can be found at the University of Alberta and AlzBrain websites:

Perhaps your loved one takes a medicine that would control some source of discomfort, and that is wearing off at the time when the "sundowning" behavior appears.

Conversely, a medicine might be causing the symptoms you're seeing. Medicines that are commonly prescribed for dementia patients often have side effects that negatively affect sleep and wakefulness, or cause agitation or discomfort. Aricept, for example, can cause dream disturbances and/or insomnia. Antidepressants (especially SSRIs) can induce or exacerbate periodic limb movements in sleep (PLMS). Atypical antipsychotics increase daytime fatigue and somnolence, and may induce restlessness or akathisia. Check any medicines that your loved one takes -- even those he has been taking for a long time -- for possible adverse effects. ( http://www.rxlist.com ) Also, consider the possibility of drug interactions that can exacerbate adverse effects or make one or both of the drugs less effective. ( http://www.drugs.com/drug_interactions.php ) Talk with the doctor or pharmacist about the possibility that your loved one is on the wrong dose, possibly due to kidney or liver problems, or weight loss or gain.

Your loved one may be getting tired and irritable due to a sleep disorder. There are many different sleep disorders that may develop in dementia patients, such as sleep-disordered breathing, PLMS, restless legs syndrome (RLS), obstructive sleep apnea, nocturnal myoclonus, and parasomnias (e.g., REM sleep behavior disorder, RBD.) The treatments that are most likely to be helpful depend on the specific type(s) of sleep disturbances involved. For example, patients suffering from sleep apnea have difficulty breathing; depending on the cause of the apnea, treatment may be, e.g., a change in diet, simple devices to encourage sleeping in a different position, an oral appliance which prevents airway blockage, or a CPAP (continuous positive airway pressure) machine. RLS is caused by a functional disturbance in the dopaminergic system, and so the treatment of choice consists of dopaminergic drugs or dopamine agonists such as pergolide or pramipexole.

Depression is very common in dementia patients. Diurnal mood variation, a pattern of mood variability in which a person’s worst and best moods vary in a predictable fashion, is a symptom of major depression. Mood is most commonly worse in the morning and better in the early evening, but the opposite pattern occurs as well. As noted elsewhere, variability in mood associated with depression is not sundowning (or "sunrising"), and may be responsive to an antidepressant.

Specific interactions with other people might be the culprit. For example, a dementia patient in a nursing home might become upset by visitors they don't recognize or don't like, or by strangers who are visiting other residents of the facility. Because visiting hours are time-regulated, this reactive agitation might appear to have a temporal association.

Your loved one's behavior might even be due to something as simple as hunger and/or thirst. Try serving dinner earlier, or offering a snack or something to drink until dinner is ready.

4.2. Good sleep hygiene

Conventional wisdom for treating sundowning has been to try to help re-establish a "normal" sleeping pattern, coupled with taking steps to minimize factors that might trigger fear or confusion:
• Increase your loved one's daytime activities, particularly physical exercise, and discourage inactivity and napping during the day. If fatigue is exacerbating the sundowning, try a brief (one hour) nap, early afternoon or just before the usual sundowning time. If the loved one won't nap, an hour of quiet time -- sitting quietly and talking together, for example, or listening to soothing music -- may help.
• Since an Alzheimer's patient is usually better able to tolerate outings, activities and increased stimulus during the earlier part of the day, plan trips to the grocery store, involvement with kids, visits to day care and so forth during the morning.
• Even during the earlier part of the day, an Alzheimer’s patient can tolerate only so much stimulation and commotion. Take steps to eliminate over-stimulation such as noisy television or radio, boisterous children, quick movements, and many things going on at one time.
• Sometimes excessive stimulation cannot be avoided. Make sure that there is a private "time out" place where your loved one can retreat for peace and quiet. Make it off-limits to children and general traffic; even the caregiver should try not to intrude unless absolutely necessary.
• Don’t physically restrain the loved one. Let him pace where he is safe. A supervised walk outdoors can help reduce restlessness. Indoors, clear all clutter and obstacles (e.g., low coffee tables and foot stools) from your loved one’s walking paths. Keep knickknacks to a minimum and the tops of tables, shelves, and other surfaces as clear as possible. Mirrors and pictures may be interpreted as unfriendly visitors; complicated, noisy appliances can be frustrating. Avoid making changes once you have things simplified.
• Give diuretics and laxatives early in day.
• Plan for the afternoon hours to be quiet and calm, to allow your loved one to unwind and relax. However, structured, quiet activity is important. Perhaps take a stroll outdoors, play a simple card game, or sing favorite songs together.
• Early evening activities that are familiar from an earlier time in the person’s life may be helpful, for example, walking the dog, a pre-dinner drink, or assisting with preparing dinner or setting the table.
• Physical discomfort -- hunger, being wet or soiled, or feeling cold/hot -- can play a part in sundowning. Light snacking during the day can be helpful. Apples and other fruits can help replace lost energy; even a loved one who is pacing back and forth does not have an endless supply of energy.
• Turning on lights well before sunset and closing the curtains at dusk will minimize shadows and may help diminish confusion.
• Discourage drinking stimulants (e.g., caffeine) or smoking near bedtime.
• Set a quiet, peaceful mood in the evening to help the loved one relax. Keep the lights low, and try to reduce the noise levels, e.g., from television and radios. Some loved ones are comforted by soft toy animals, pets, hearing familiar tunes, or an opportunity to engage in a favorite pastime.
• Have a bedtime routine. Try to have the loved one go to bed at the same time each night. Have a routine for getting ready for bed, such as taking a bath and having some warm milk, a back rub, or perhaps reading out loud.
• Make sure the loved one gets enough rest at night. Provide a comfortable bed. Create a calm atmosphere for sleeping. Reduce noise and light. Stuffed animals or a pet may soothe the loved one and allow them to sleep. Soothing music may help, or a recording of ocean waves or a mountain stream, or even "white noise" from, e.g., a fan.
• Have the loved one use the toilet right before bedtime, to minimize the need for nighttime toileting. Place a commode next to the bed for nighttime urination. Walking to the bathroom in the middle of the night may wake the loved one up too much, making it difficult to get back to sleep.
• Close the curtains and leave night lights on in the bedroom, hall, and bathroom if the darkness is frightening or disorienting.

Most of these recommendations appear (to me) to be based on common sense. A few, however, might be somewhat controversial, as will be discussed later.

Such recommendations have rarely been studied in clinical trials. I did find one, called "NITE-AD" (McCurry et al 2005), which was focused primarily on sleep disturbances. At the end of six months, loved ones whose caregivers were trained in a combination of sleep hygiene, daily walking, and light exposure interventions were found to have fewer nighttime awakenings, less total time awake at night, and less depression. The researchers noted that, given the design of the study, it was impossible to determine whether an individual intervention or some combination of interventions had the greatest effect on the outcomes.

I found it curious that the paper did not present any data on "secondary outcomes" other than depression, such as disruptive behaviors -- even though the data was collected -- and ignored the worrisome (to me) observation that NITE-AD patients exhibited a trend toward more-rapid cognitive decline over time. Granted, the trial was very small and the data might have been skewed ... but that is true of all the data, not just the rates of cognitive decline.

4.3. Support a "normal" circadian rhythm

As sundowning is being established more firmly as a chronobiological phenomenon, measures intended to help re-establish a "normal" circadian rhythm are being suggested more often for treating it. These include:

- Designing ChEI therapy to support, rather than disrupt, the circadian rhythm

Deterioration of the brain's cholinergic system is a hallmark of Alzheimer's, with degeneration of cholinergic neurons in the basal forebrain being one of the first biochemical changes that is seen. The cholinergic system comprises the neurotransmitter acetylcholine, the enzyme cholinesterase (whose function is to destroy excess acetylcholine), and cholinergic receptors. The Alzheimer's brain does not produce adequate acetylcholine for optimum neurotransmission. Drugs such as Aricept/donepezil, Razadyne/galantamine, and Exelon/rivastigmine are cholinesterase inhibitors (ChEIs), i.e., they prevent the enzyme from destroying as much of the acetylcholine as usual, thereby effectively increasing its levels in the brain and increasing cholinergic activity.

The cholinergic system has a pronounced circadian rhythm upon which sleep, waking, and fundamental aspects of learning depend. For example, in general, the healthy brain has low levels of acetylcholine during slow-wave sleep, and high levels during wakefulness. ChEIs have the potential to either mitigate disease-induced disturbances of the cholinergic rhythm by raising acetylcholine levels (increasing cholinergic activity) during the day, or to exacerbate sleeplessness and agitation by preventing the normal fall in acetylcholine levels (and thereby interfering with the normally reduced cholinergic transmission) at night.

The ChEI drug that is used and the time of day at which it is given can determine whether the normal cholinergic transmission and rest-activity cycles are supported or undermined. For example, Aricept/donepezil has a very long half-life (70 hours) in the body. Since its concentration in the blood doesn't vary much over the course of a 24-hour day (once the loved one has reached steady state, i.e., has been taking a given dose of the drug for a couple of weeks), it maintains high levels of acetylcholine in the brain at night, even if the drug is given in the morning. Aricept therefore has the potential to disrupt sleep and trigger insomnia. Razadyne/galantamine, on the other hand, has a much shorter half-life (7 hours). The extended-release formulation administered in the morning, in particular, helps support the normal circadian cholinergic rhythm, maintaining higher levels of the drug in the blood (and thereby higher levels of acetylcholine in the brain) during the day and lower levels at night.

- Bright light therapy

Since exposure to light plays a major role in regulating the phase relationships among core body temperature, melatonin rhythm, and the circadian rest-activity cycle, bright light therapy is frequently suggested as one simple way to help treat sundowning.

There is evidence that bright light can be used to change the timing of circadian rhythms (the circadian "phase") or, when administered at certain times of the day, may increase the amplitude of circadian rhythms without necessarily affecting the phase. Some -- but not all -- studies have found that circadian rhythms in older adults are phase-advanced, that is, the rhythms are shifted to an abnormally early time, resulting in the adults falling asleep and waking up earlier than usual. Conversely, some Alzheimer's patients have phase-delayed activity, that is, sleep onset and morning rising are shifted to abnormally late times. Evening bright light has been shown to delay circadian rhythms, whereas early morning light has been shown to advance circadian rhythms. As a result, advanced rhythms, such as those seen in healthy older adults, might be beneficially delayed with exposure to evening light, whereas a phase delay such as that seen in Alzheimer's may be beneficially advanced with exposure to morning light.

Results from clinical studies on dementia patients, however, have been inconsistent -- quite possibly due to differences in the type of light that was used, the length of exposure, and the time of day the therapy was implemented. Some researchers have suggested that more consistent results might be obtained if only one type of dementia were included in a study, or if the studies did not focus on severely impaired institutionalized patients who are likely to have incurred more marked SCN degeneration. Women show different patterns of sleep and circadian physiology during aging than men, so perhaps the genders should be studied separately. Some researchers suspect that other factors are likely to have been involved, that were not detected due to lack of appropriate controls. One wonders whether more consistent results might have been seen if subjects were screened to eliminate dementia patients who suffer from sleep disorders and other common causes of agitation (e.g., pain), for example.

In any event, some of the largest and best-designed studies found no improvement in nighttime sleep or daytime alertness from bright light therapy, and/or no improvement in agitated behavior, and one study actually reported an increase in behavioral problems. (Note: bright light can contribute to eyestrain and headaches, and can cause glare and reflection off polished surfaces which, in turn, can cause confusion, agitation, and anger.)

- Melatonin supplements, alone and in combination with bright light therapy

As noted above, circadian rhythm disturbances have been linked to abnormalities in the SCN. Rhythmic nocturnal melatonin secretion from the pineal gland is directly generated by the circadian clock located in the SCN. Because several studies suggest that melatonin levels are either low or dysregulated in Alzheimer's, oral melatonin supplements have been proposed as a treatment for sundowning.

However, clinical trials on the use of melatonin for treating sundowning or sleep disorders have failed to show that the approach will be broadly beneficial for dementia patients. A recent multicenter, placebo-controlled trial of melatonin for sleep disturbance in Alzheimer's disease found, on average, no significant improvement in objective measures of sleep. Some patients showed improved sleep quality (less interrupted sleep and reduced daytime sleepiness and agitation), some showed no effects on sleep, and some patients became more aggressive. Three double-blind, placebo-controlled studies with objective assessment criteria for measuring sundowning behavior itself -- not sleep per se -- produced conflicting results. Two concluded that there was a small but statistically significant improvement in sundowning/agitated behavior, although one of these noted that melatonin was less effective than morning bright light therapy. The third controlled study concluded there was no improvement.

The stage of dementia may affect the potential benefit of melatonin. For melatonin to have an effect, it must be able to bind to melatonin receptors. Since the numbers of melatonin MT1 receptors in the SCN are extremely low in late-stage Alzheimer's patients (i.e., only 10% of those found in age-matched controls), supplementary melatonin in the late stages may not have a discernible effect on circadian rhythm disorders. Moreover, the sleep/circadian timing systems are the product of complex interactions among multiple brain regions, neurotransmitter systems and modulatory hormones. The rhythmic levels of many other hormones besides melatonin (e.g., cortisol, vasopressin, pulsatile luteinizing hormone, testosterone secretion, dehydroepiandrosterone, beta-endorphine) may be affected in Alzheimer's patients. Since abnormalities in any key neurotransmitter system will impinge on the sleep/circadian timing systems at multiple levels, oral supplements of a single hormone are unlikely to readjust the entire, complex sleep/circadian timing systems as the dementia progresses and more of these neurotransmitter systems are damaged.

Studies on bright light therapy in combination with melatonin supplements have also produced conflicting results. Haffmans et al (2001), for example, found that bright light therapy has a positive effect on sundowning, whereas bright light therapy plus melatonin does not. They hypothesized that the treatment, as designed, "overshot" the chronobiological synchronization of the melatonin supplement. (In healthy people, the density and the sensitivity of melatonin receptors are elevated during the daytime, when endogeneous melatonin levels are low. Hence, a melatonin dose given at a time when melatonin receptor density and sensitivity are lowest may show no effect compared with the same dose given when receptor density and sensitivity are highest.) Others found that the combination reduced agitation and improved several sleep parameters, although some adverse side effects were reported (dysphoric mood, irritability, dizziness, and headache.)

One recent study concluded that melatonin should only be used in combination with bright light therapy. Melatonin by itself shortened sleep onset latency and increased total sleep time; however, it also decreased affect ratings and increased withdrawn behavior, which were counteracted by light therapy. ("Affect" refers to the experience of feeling or emotion.)

All of these were relatively short-term studies. It should be noted that the safety of long-term use of melatonin supplements has never been established. Melatonin can cause a number of serious side effects -- including confusion and depression -- which become more likely as the patient continues to receive it. Supplemental melatonin may exacerbate seizure disorders, which is a concern for Alzheimer's patients since they can develop seizure disorders at any stage. Since melatonin shrinks arteries, it may be contraindicated in loved ones with cardiovascular disease (including vascular dementia). It may also aggravate autoimmune disorders (which can cause dementia symptoms) such as arthritis and severe allergies.

Daily administration of melatonin, even of a low dose (e.g., < 3 mg) can cause the loved one to build up a tolerance, and can eventually disrupt, rather than improve, sleep in some people. Also, melatonin can have serious interactions with a number of medicines, including the antidepressants that are often prescribed for Alzheimer's patients, blood thinners (e.g., warfarin, heparin), blood pressure medications (especially nifedipine), drugs that may affect the immune system (e.g., azathioprine, cyclosporine, prednisone), and fluvoxamine. Anyone considering starting a loved one on melatonin should first discuss it with the doctor and the pharmacist.

- Physical activity

Numerous studies have concluded that exercise can help minimize or eliminate agitated behavior in dementia patients. Exercise also has been linked to phase shifting of circadian rhythms as well as promotion of more restful sleep in older adults, and is considered to be likely to do the same for dementia patients, although no controlled trials that looked at the isolated effects of exercise on sleep in dementia have been done, to my knowledge. Regular exercise also builds muscle mass, improves strength, reduces falls, and improves mood. There do not appear to be any down sides to physical activity, as long as the exercise program is designed for the capabilities and interests of the loved one, whereas there are many potential benefits.

4.4. Let them eat chocolate

Over the past dozen or so years, Alzheimer's care has been undergoing a major paradigm shift, toward "person-centered care". Person-centered care is based on the premise that the personality of the loved one is increasingly concealed rather than lost, and therefore seeks to personalize the loved one's care and environment, to honor who he is and what brings him joy.

This has led to recognition of the fact that the loved ones' behaviors may often be understood as expressions of their individual desires and needs, rather than simply as symptoms of the disease process. As the loved ones' dementia advances, they experience increasing deficits in all aspects of their lives, but most especially and importantly, they lose the ability to verbally communicate their needs -- physiological, psychological, spiritual, social, and comfort needs -- to others. Their behaviors become the conduit for expressing their needs, pleasures, and frustrations. Stress, from fatigue, changes in routine, caregiver, or environment, demands that exceed the loved one's ability to function, multiple and competing stimuli, perceptions of loss, and physiologic factors such as illness, pain, discomfort, and adverse effects of medications, can result in anxiety and increasingly dysfunctional behaviors. In this context, behavioral "symptoms" -- both verbal manifestations such as repetitive questioning or vocalizations and non-verbal ones including withdrawal or physical violence -- can be interpreted as communications meant to convey specific messages and to achieve particular goals relating to unmet needs. Comfortable people do not hit, scream, pound on tables, or call out.

If the loved one's needs remain unmet while the caregivers' energies are directed toward curtailing the behaviors themselves, the likely outcome of this miscommunication is a vicious cycle of further withdrawal and isolation due to perceived inability of the loved one to interact effectively with others, leading to increased depression and anxiety, leading to more dysfunctional behaviors.

Here we get to the crux of it: If the loved one's circadian rhythm is out of whack, and we struggle mightily to force the loved one into wake-sleep patterns that fit our own circadian rhythms instead of his, won't we be in danger of increasing his agitation, as an expression of his stress, fears, and discomfort? And to my way of thinking, this concern is supported by the rash of studies, both recent and not so recent, which have shown that allowing dementia patients to be active when they choose to be active, and sleep when they choose to sleep, may decrease, or even eliminate, serious behavioral problems.

For example, in a study of more than 50 nursing homes (Sloane et al 1998), the proportion of residents who exhibited an agitated behavior varied from "none" in several homes to 38% in one home. Lower rates of agitation were seen in homes that had higher proportions of residents in bed during the day.

More recently, the Parker Jewish Institute in New Hyde Park, NY, implemented a "midnight snack" program, giving wanderers access to food and beverages at will in the middle of the night, instead of insisting that they go back to bed. They report that the program resulted not only in far less agitation among their residents, but also in a sharp decrease in falls and related injuries, and even a huge decrease in pressure sores.

The Hebrew Home at Riverdale in New York established "ElderServe at Night", an "Adult Night Care" program that offers activities and socialization, meals and showers, and even evening trips to the circus or nearby restaurants, for loved ones who are active at night and sleep during the day. Both the patients and their caregivers are enthusiastic about the program. The patients are more alert and happy, and exhibit far fewer behavioral problems, while their families can sleep soundly through the night.

Beatitudes nursing home in Phoenix has gone even further, setting up a person-centered care facility in which residents are allowed to sleep, be bathed, and dine whenever they choose, and eat and drink whatever appeals to them -- even a little alcoholic "nip" now and then. There is a 24-hour restaurant which functions as the primary dining room and snack area. There is an around-the-clock activity program, that offers a balance of sensory-calming and sensory-stimulating activities individualized to each resident. Instead of group activities such as bingo, in which few residents could actually participate, they conduct one-on-one activities -- block-building, coloring, simply conversing -- and use art, music, and exercise to "generate positive emotions", and the outdoors to create connections with the wind, bird song, and sunshine. They have eliminated anything that might be considered restraining, from deep-seated wheelchairs that hinder standing up to bedrails (although some beds are lowered and protected by mats). Bathing is a pleasurable experience and the towel bath method is an option for those who no longer enjoy a shower. Instead of using antipsychotics to treat serious behavioral issues, emphasis is on adequate pain medication and antidepressants. There is no sundowning -- even though the facility is specifically for patients with moderate to severe dementias (of all sorts, including frontotemporal dementia and dementia with Lewy bodies), and accepts those who previously exhibited serious behavioral problems; and even though residents are allowed to stay until they die.

In 2005, Beatitudes instituted a training program for qualified and interested nursing facilities to learn best practices in person-centered dementia care. Those facilities similarly report a reduction in the use of antipsychotic, antidepressant, and sedative medications, decreased use of physical restraints, decreased weight loss, and less hospitalization and emergency department use.

In short, it seems prudent to adjust "conventional wisdom" recommendations to take personal preferences of the loved one into account, including preferences for wake/sleep cycles and napping, to the greatest extent practicable. One caregiver on a discussion forum noted that her loved one was very resistant to staying in bed at night, and was developing behavioral problems. The situation was resolved simply by offering a midnight snack. Beatitudes emphasizes that it is much easier and more effective to anticipate needs rather than wait for a behavior to occur. Caregivers need to be sure to identify discomfort (such as pain, constipation, skin deterioration, malnutrition, physical exhaustion, and adverse drug effects) and manage it effectively. Offer food and drink frequently; anticipate bowel and bladder needs by regularly escorting the loved one to the bathroom (on the loved one’s schedule); and assure other comfort needs are met such as comfortable clothing, room temperatures, and lighting and noise levels. Activities need to be meaningful to the loved one, with the opportunity to make connections to the people and the environment around him; and should be offered to the loved one, not forced on him. Remember that too much stimulation can be just as harmful (if not more so) as too little.

It is one thing for a well-staffed facility to cater to its residents' unique needs, but it may not be practical for the at-home caregiver to adjust the entire household to the rhythms of the loved one. If your loved one simply must be active in the middle of the night, one thing that might be considered is setting up a "safe room" where your loved one can safely pace, which allows you to sleep more soundly. Beverly Bigtree Murphy (if you're not familiar with her website, you should be) describes the "safe room" she set up for her husband -- who paced at night for two years -- at: http://bigtreemurphy.com/Symptoms%20of%20Taking%20Charge%20Stage%20of%20Care.htm#Sundowing,%20Ritualistic%20Behaviors,%20Ccompulsions

5. When all else fails

Learning person-centered care techniques sounds like a lot of hard work and effort. Actually, the sooner the caregiver begins learning "how to speak Alzheimer's", the better off everyone will be, and the less likely that behavioral problems will crop up. Studies have repeatedly shown that caregivers trained in non-drug interventions can not only reduce the frequency and severity of behavioral symptoms and produce higher quality of care for their loved ones, but also reduce their own depression and burden.

Are there medicines that may help? There is some evidence that antipsychotics may help reduce agitation in select patients, but little evidence to support the use of other drugs that are sometimes suggested, such as benzodiazepines, antihistaminics, anticonvulsants, monoamine oxidase inhibitors, or SSRIs. To date, there is no published Class I evidence that any of these drugs are useful for treating sundowning per se. Moreover, there is an increasing reluctance on the part of educated doctors to prescribe medicines for "treating" sundowning because (a) evidence indicates that non-drug interventions are more likely to be beneficial, (b) antipsychotics and benzodiazepines further weaken the already unstable sleep-wake rhythms and further decrease neuronal metabolic activity, and (c) each class of drugs carries considerable risk, ranging from increased likelihood of falls and hip fractures, confusion, psychoses, weight loss, stroke, and/or heart attacks, to increased likelihood of sudden death. Concomitant use of cholinesterase inhibitors (Aricept/donepezil, Razadyne/galantamine, and Exelon/rivastigmine) and antipsychotics may increase the risk of extrapyramidal symptoms by disrupting the acetylcholine/dopamine balance in the striatum. In addition, some drugs are contraindicated for loved ones with some types of dementia, such as the antipsychotics to which Lewy body dementia patients are typically extremely sensitive.

However, each loved one is different. If all else fails, yours might be helped by a drug that is not generally beneficial. Given the risks associated with the candidate drugs, plus possible interactions with other medicines your loved one may be taking, it would be prudent to seek the help of a highly qualified and experienced neuro or geripsych to manage the treatment for your loved one. Be sure to discuss the risks with the doctor, and ask what adverse effects to watch for.

If you are willing to consider trying something outside-the-box, there have been two successful (albeit tiny) clinical trials on using prazosin to treat agitation and aggression in Alzheimer's patients. Two larger trials are now recruiting. Prazosin is a mild antihypertensive with a good safety profile, is inexpensive, and is becoming more and more widely used to treat sleep disruption and agitation associated with PTSD. Given an hour before bedtime, low doses of prazosin reduce light sleep, normalize REM sleep, and increase total sleep time. An additional daytime dose was found to reduce residual daytime agitation symptoms of civilian trauma victims.

Further reading and references

General overviews on sundowning, circadian rhythms, and sleep disturbances

- Volicer L, Harper DG, Manning BC, Goldstein R, Satlin A. Sundowning and circadian rhythms in Alzheimer's disease. Am J Psychiatry 2001;158 (5): 704–11.
- Bachman D, Rabins P. "Sundowning" and other temporally associated agitation states in dementia patients. Annu Rev Med. 2006;57:499-511.
- Kim P, Louis C, Muralee S, Tampi RR. Sundowning Syndrome in the Older Patient. Clinical Geriatrics 2005; 13(4):32-36.
- Klaffke S, Staedt J. Sundowning and circadian rhythm disorders in dementia. Acta Neurol Belg 2006; 106:168-175
- Theison AK, Geisthoff UW, Förstl H, Schröder SG. Agitation in the morning: symptom of depression in dementia? Int J Geriatr Psychiatry 2009 Apr;24(4):335-40.
- Wulff K, Gatti S, Wettstein JG, Foster RG. Sleep and circadian rhythm disruption in psychiatric and neurodegenerative disease. Nat Rev Neurosci. 2010 Aug;11(8):589-99.
- Ancoli-Israel S, Ayalon L. Diagnosis and Treatment of Sleep Disorders in Older Adults. American Journal of Geriatric Psychiatry 2006; 14:95–103
- Harper DG, Stopa EG, McKee AC, Satlin A, Harlan PC, Goldstein R, Volicer L. Differential circadian rhythm disturbances in men with Alzheimer disease and frontotemporal degeneration. Arch Gen Psychiatry 2001;58:353-360
- Weldemichael DA, Grossberg GT. Circadian Rhythm Disturbances in Patients with Alzheimer's Disease: A Review. Int J Alz Disease 2010; Article ID 716453.
- Huybrechts KF, Rothman KJ, Silliman RA, Brookhart A, Schneeweiss S. Risk of death and hospital admission for major medical events after initiation of psychotropic medications in older adults admitted to nursing homes.CMAJ 10.1503/cmaj.101406

Nondrug interventions

- Kolanowski AM, Litaker M, Buettner L. Efficacy of theory-based activities for behavioral symptoms of dementia. Nurs Res 2005 Jul-Aug;54(4):219-28.
Note that the patients engaged in the activities for "up to 20 minutes per day", and the authors referenced Kovach and Wells (2002) who found that the daily activity schedule had to be balanced, since over-stimulation as well as under-stimulation can contribute to agitation.
- Teri L, Logsdon RG, McCurry SM. Exercise interventions for dementia and cognitive impairment: the Seattle Protocols. J Nutr Health Aging. 2008;12:391–394.
- Baehr EK, Eastman CI, Revelle W, Olson SH, Wolfe LF, Zee PC. Circadian phase-shifting effects of nocturnal exercise in older compared with young adults. Am J Physiol Regul Integr Comp Physiol. 2003;284:R1542–R1550.
- McCurry SM, Gibbons LE, Logsdon RG, Vitiello MV, Teri L. Nighttime Insomnia Treatment and Education for Alzheimer's Disease: A Randomized, Controlled Trial. J Am Geriatr Soc. 2005;53(5):793-802.

Person-centered care

- Long CO, Alonzo TA. (2008). Palliative care for advanced dementia: A model teaching unit. Practical approaches and results. Arizona Geriatrics Society Journal, 13(2), 14-17.
- Long CO. Palliative care for advanced dementia. J Gerontol Nurs. 2009 Nov;35(11):19-24.
- Belluck P. Giving Alzheimer’s Patients Their Way, Even Chocolate. New York Times Dec 31, 2010.
- Buckley C, Estrin J. All-Night Care for Dementia’s Restless Minds. New York Times June 12, 2009.
- Girshman P. Midnight Munchies Keep Elderly Safer In NY Nursing Home. Kaiser Health News Mar 16, 2010.
- Sloane PD, Mitchell CM, Preisser JS, Phillips C, Commander C, Burker E. Environmental correlates of resident agitation in Alzheimer's disease special care units. J Am Geriatr Soc 1998; 46:862-869.
- Gauthier S, Cummings J, Ballard C, Brodaty H, Grossberg G, Robert P, Lyketsos C. Management of behavioral problems in Alzheimer’s disease. International Psychogeriatrics 2010
- Smith M, Buckwalter K. Behaviors associated with dementia. AJN 2005; 105(7):40-52.
- Rader J, Barrick AL, Hoeffer B, Sloane PD, McKenzie D, Talerico KA, et al. (2006). The bathing of older adults with dementia. American Journal of Nursing 106(4), 40-48.
- Whall AL. Changing the care provided persons with dementia -- The role of experiential knowledge and philosophy of science.
- McGeorge, S. (2008) Acute Mental Health Issues, in Older People and Mental Health Nursing: A Handbook of Care (eds R. Neno, B. Aveyard and H. Heath), Blackwell Publishing Ltd, Oxford, UK.

Person-centered care at home

- Brackey J. Creating Moments of Joy: A Journal for Caregivers, Fourth Edition. Purdue University Press; (September 1, 2008)
- The Savvy Caregiver training program
(You may be able to get a 20% discount with code AADVD20 .)
- Feil N. The Validation Breakthrough: Simple Techniques for Communicating with People with 'Alzheimer's-Type Dementia, Second edition. Health Professions Press (January 15, 2002).

Bright light therapy

- Forbes D, Culum I, Lischka AR, Morgan DG, Peacock S, Forbes J, Forbes S. Light therapy for managing cognitive, sleep, functional, behavioural, or psychiatric disturbances in dementia. Cochrane Database Syst Rev. 2009 Oct 7;(4):CD003946.
- Skjerve A, Bjorvatn B, Holsten F. Light therapy for behavioural and psychological symptoms of dementia. Int J Geriatr Psychiatry. 2004 Jun;19(6):516-22.
- Ancoli-Israel S, Martin JL, Gehrman P, et al: Effect of light on agitation in institutionalized patients with severe Alzheimer disease. Am J Geriatr Psychiatry 2003;11:194-203.
- Barrick AL, Sloane PD, Williams CS, Mitchell CM, Connell BR, Wood W, Hickman SE, Preisser JS, Zimmerman S. Impact of ambient bright light on agitation in dementia. Int J Geriatr Psychiatry. 2010 Oct;25(10):1013-21.


- Melatonin. Alzheimer Research Forum.
- Gehrman PR, Connor DJ, Martin JL, Shochat T, Corey-Bloom J, Ancoli-Israel S. Melatonin Fails To Improve Sleep Or Agitation In A Double-Blind Randomized Placebo-Controlled Trial Of Institutionalized Patients With Alzheimer’s Disease. Am J Geriatr Psychiatry. 2009 February; 17(2): 166–169.
- Asayama K, Yamadera H, Ito T, Suzuki H, Kudo Y, Endo S. Double blind study of melatonin effects on the sleep-wake rhythm, cognitive and non-cognitive functions in Alzheimer type dementia. J Nippon Med Sch. 2003 Aug;70(4):334-41.
- Singer C, Tractenberg RE, Kaye J, Schafer K, Gamst A, Grundman M, Thomas R, Thal LJ. 2003. A multicenter, placebo-controlled trial of melatonin for sleep disturbance in Alzheimer’s disease. Sleep 26(7): 893–901.
- Serfaty M, Kennell-Webb S, Warner J, Blizard R, Raven P. 2002. Double blind randomised placebo controlled trial of low dose melatonin for sleep disorders in dementia. Int J Geriatr Psychiatry 17(12): 1120–1127.

Bright light and melatonin

- Haffmans PM, Sival RC, Lucius SA, Cats Q, Van Gelder L. Bright light therapy and melatonin in motor restless behaviour in dementia: A placebo-controlled study. Int J Geriatric Psych 2001; 16[1]:106-10
- Dowling A, Burr Robert L, Van Someren Eus JW, Hubbard Erin M, Luxenberg JS, Mastick J, Cooper BA. Melatonin and bright-light treatment for rest-activity disruption in institutionalized patients with Alzheimer's disease. J Am Geriatr Soc 2008; 56(2): 239-246.
- Riemersma-van der Lek RF, Swaab DF, Tiwsk J, Hol EM, Hoogendijk WJ, Van Someren EJ. Effect of bright light and melatonin on cognitive and noncognitive function in elderly residents of group care facilities: a randomized controlled trial. JAMA. 2008;299:2642–2655.

Cholinesterase inhibitors (ChEIs)

- Nieoullon A, Bentué-Ferrer D, Bordet R, Tsolaki M, Förstl H. Importance of circadian rhythmicity in the cholinergic treatment of Alzheimer’s disease: focus on galantamine*. Curr Med Res Opin. 2008 Dec;24(12):3357-67.
- Davis B, Sadik K. Circadian cholinergic rhythms: implications for cholinesterase inhibitor therapy. Dement Geriatr Cogn Disord. 2006;21(2):120-9.
- Robert P. Understanding and Managing Behavioral Symptoms in Alzheimer’s Disease and Related Dementias: Focus on Rivastigmine. Curr Med Res Opin. 2002;18(3).


- Wang LY, Shofer JB, Rohde K, Hart KL, Hoff DJ, McFall YH, Raskind MA, Peskind ER. Prazosin for the treatment of behavioral symptoms in patients with Alzheimer disease with agitation and aggression. Am J Geriatr Psychiatry. 2009 Sep;17(9):744-51.
- Wang LY, Petrie EC, Rohde K, Hart KL, Hoff DJ, Shofer JB, Rasking MA, Peskind ER. P2-277: Prazosin for treatment of disruptive agitation in Alzheimer's disease. Alz & Dementia 2008;4(4):T453
- Two larger trials are now recruiting.
- Taylor FB, Martin P, Thompson C, et al. (2008) Prazosin effects on objective sleep measures and clinical symptoms in civilian trauma posttraumatic stress disorder: a placebo-controlled study. Biol Psychiatry 63:629–632.
- Raskind MA, Peskind ER, Hoff DJ, et al. (2007) A parallel group placebo controlled study of prazosin for trauma nightmares and sleep disturbance in combat veterans with post-traumatic stress disorder. Biol Psychiatry 61:928–934.
- Raskind MA, Peskind ER, Kanter ED, Petrie EC, Radant A, Thompson C, et al. Reduction of Nightmares and Other PTSD Symptoms in Combat Veterans by Prazosin: A Placebo-Controlled Study. Am J Psychiatry. 2003;160:371–373.
- Taylor F, Raskind MA. The alpha1-adrenergic antagonist prazosin improves sleep and nightmares in civilian trauma posttraumatic stress disorder. J Clin Psychopharmacol. 2002;22:82–85.
- Taylor F, Lowe K, Thompson C, McFall MM, Peskind ER, Kanter ED, et al. Daytime prazosin reduces psychological distress to trauma specific cues in civilian trauma posttraumatic stress disorder. Biol Psychiatry. 2006;59:577–581