The Whitworths of Arizona, bringing science to you in everyday language.

Thursday, September 14, 2017

An International Honor!

Today, we are tooting our own horn. We are so honored that our book, The Caregiver’s Guide to Lewy Body Dementia, has received international recognition: It has been included in the Caregiver Homes list of The Best Dementia Books: 50 Essential Reads For Anyone Coping With Alzheimer’s Disease Or Dementia. Caring Homes, located in the UK, has been providing direct support to family caregivers caring for patients with complex or chronic diseases for almost two decades. Criteria for inclusion in their list included:
  • Being on best seller lists. The Guide has been Amazon’s bestselling book about Lewy body dementia since 2011.
  • Earned high ratings by readers: The Guide has 125 five-star reviews and counting on Amazon alone.
  • Won awards. The guide received a Caregiver Friendly Award from Today’s Caregiver Magazine in 2012. It has also been named “Book of the Week” twice by Alzheimer’s Weekly and Dementia Weekly and is a featured book in the Colorado Chapter of the Alzheimer’s Association’s list of recommended books.
  • Written by experts. Nope. Neither Helen nor James were experts when they wrote the book, but their experience and research since then definitely qualifies them as “Dementia Caregiver Advocates” now.
  • Written by loved ones who shared insights into supporting and caring for someone with dementia: James shares his story of going through the Lewy body journey with his first wife, Annie in the late 1990’s, early 2000’s, when little was known about the disorder. Helen includes some stories about caring for her sister with late stage Parkinson’s. However, this book is not just about them. It is a go-to book illustrated by stories from many caregivers besides the Whitworths.
Since the Guide was written, we (Helen and James Whitworth) have written three more books and are working on a third. All of our books are written in our signature style, with well-researched, fact-filled but easy-to-read language illustrated by many caregiver stories. All of these book (except the one yet to be published) are available on Amazon, and on our website, LBDtools.com.
  • Riding a Roller Coaster with Lewy Body Dementia was actually their first book, written for staff. This book has been updated and republished. It has been used as a book accompanying trainings that we have presented and can be bought on Amazon. It makes a great gift to give to your in-home helper or to a residential staff member.
  • Managing Cognitive Issues of Lewy Body Dementia and Parkinson’s is about the early symptoms of LBD and the non-motor symptoms of Parkinson’s and how to deal with them, using a variety of non-drug options to limit the use of drugs themselves.
  • On the Road with the Whitworths. This is a hilarious memoir of our first year of RVing and teaching about LBD in Arizona, California, Oregon and Washington. A great book to read just for fun when you need a break from caregiving!
  • Unpublished: (working title: Dealing with the Behavioral and Psychological Symptoms of Lewy Body and Other Dementias.) This book walks the reader through the way dementia changes the brain and causes behavioral and psychological symptoms of dementia (BPSD). Then using this information, the book offers methods for dealing with these BPSD using more effective interactions, non-drug options and fewer drugs. Should be out by early 2018.
We also maintain this blog and our website LBDtools.com.  Our blog entries have been limited this summer while we enjoyed our travels but look for weekly blogs entries starting in October.

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Wednesday, September 6, 2017

Electronic Monitors

At a recent support group meeting, members were talking about various ways to electronically monitor their loved ones.

By the time I get to bed, I'm so exhausted that I sleep really deeply. My daughter came to visit and told me that she her father got up in the middle of the night and tried to go outside "to find your mother." She talked him into going back to bed, but how long has this been going on? What if he figures out how to unlock the door? I need a warning system. -- Maxine

Judy, another group member, recommended an alarmed door stop. They sell on Amazon sell from $3 to $7 each. (Or you can pay hundreds, but Judy says her cheaper one works just fine. ) These work just like one of those old rubber stoppers except that trying to move the door sets off an alarm. Here's a page of door stop alarms.

Howard takes afternoon naps that almost always last a couple of hours. I'd like to be able to get out and do some shopping and such when he's sleeping but I wouldn't feel safe doing that unless I could monitor him. I know there are baby monitors but I don't want to carry something like that around. Isn't there something I can put on my phone? -- Linda

A group member told Linda about the smart phone app she used as a monitor. We found a couple for you to consider. Which one you would prefer would depend on personal preference:

Presence requires two I-phones i05 or better. You set up one to be the camera to video and use your personal iPhone as the monitor. It can be set to start recording when it detects motion. You can also use the monitoring phone to initiate a two-way conversation. Neither picture nor audio is great, but it might get the job done. This app is free from the Apple Store.

iCamSpy comes in iPhone, Android and PC/Mac versions. It uses a PC with a webcam and microphone for surveillance and the phone for monitoring. You don't have any two-way features but the video is apparently quite good. You can set it up to start with low, medium or high motion sensitivity. This works well with Wi-Fi but poorly with 3G/4G. This app costs $4 from the Apple Store or Google Play.

We have the opposite problem. Jimmy likes to take walks and its pretty safe in our neighborhood. He can go around the block and never have to cross a street but still I worry. I've heard about tracker watches but don't know what to buy. -- Gladys

Colin is in a memory care facility. Our home is too far away for me to go every day but we can phone although Colin can't figure out how to use a cell phone and the land line is long distance. Surely there's something out there that will work for us. -- Yvonne

The Verison Gizmo Gadget would probably work for both Gladys and Yvonne. Caregivers who have tried it report that it is designed as a child's watch but "doesn't look childish." It has a GPS that Gladys can use to keep track of Jimmy. It is also a very simple phone. Colin need only tap a "ringing phone" icon twice to answer the phone or call a preprogrammed number. If Colin doesn't answer, the phone automatically answers in ten seconds, which would allow Yvonne to know what's going on around Colin. You have to be a Verizon customer to use this gadget and it costs $149 initially plus an additional $5 a month. However, it does have great reviews in a variety of places. This PC Magazine article describes it and Verison's ad does too. It has other features too but they only show up if you want them to. All Colin would see are the phone icons.

Getting Lew in and out the car is almost impossible for me anymore. I wish doctors still make home visits. We Skype my son and his family all the time. Wouldn't it be great if we could just Skype the doctor? -- Janice

We wouldn't recommend that Janice give up taking Lew to the doctor altogether, but Teledoc is a virtual health service that might act as a supplement for things like a UTI. Virtual visits to qualified doctors take place over the phone or through video. They also offer two- and three-party calling to keep you as the caregiver involved with every visit, giving you more flexibility. Available any time of day, seven days a week, they cover non-emergency care for such conditions as colds, flu, rashes, respiratory infections and more. The first visit may be free and following visits are $45 until Oct. 31, 2017, after which they are $49. AARP CARECONNECT for Family Caregivers.

To help collect information for your virtual doctor's visit you might like to use a fitness tracker. The URBST Fitness Tracker for is also a wireless Bluetooth 4.0 heart rate monitor and sleep monitor. It acts as a traditional watch as well. Sync it wirelessly to your smart phone or PC. Because it is waterproof and has a long life battery, it doesn't have to be removed very often. (I've worn a similar one for almost two years!) $38.90 on Amazon. It does only come in black. This one was relatively inexpensive and had five stars--a winner in our book! Click here to review or buy.

Feel free to make more suggestions. If we get enough, we'll do another blog!

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.


Sunday, August 20, 2017

NUTRITION THERAPY FOR DEMENTIA: USING ESSENTIAL OILS

This blog is by guest blogger, Regina Hucks, our consultant on alternative therapies.

You will find an enormity of Essential Oils on the web, in health food stores, specialty shops, even grocery stores but one thing I can state as absolute fact … Essential Oils are NOT alike.

Rather than use an explanation from a biased source (a manufacturer or supplier) I’ve gone to the dictionary to answer the question, “What IS an Essential Oil?”

“An essential oil is a concentrated hydrophobic liquid containing volatile aroma compounds from plants. Essential oils are also known as volatile oils, ethereal oils, aetherolea, or simply as the oil of the plant from which they were extracted, such as oil of clove. An oil is "essential" in the sense that it contains the "essence of" the plant's fragrance—the characteristic fragrance of the plant from which it is derived.[1] The term essential used here does not mean indispensable as with the terms essential amino acid or essential fatty acid which are so called since they are nutritionally required by a given living organism.[2]

Essential oils are generally extracted by distillation, often by using steam. Other processes include expression, solvent extraction, absolute oil extraction, resin tapping, and cold pressing. They are used in perfumes, cosmetics, soaps and other products, for flavoring food and drink, and for adding scents to incense and household cleaning products.”

Essential Oils cannot be reproduced in the pharmaceutical industry. Chemists can replicate some of the known constituents but it would be next to impossible to successfully replicate or recreate an essential oil in the laboratory without sacrificing purity and therapeutic value.

Essential Oils embody the regenerative, protective and immune strengthening properties of plants. These are very powerful antioxidants that neutralize free radicals which can cause cellular damage in the body. Many essential oils have antibacterial, antifungal, antiviral, anti-infectious, antimicrobial, antitumor, anti-parasitic and antiseptic properties.

So, right now you're asking, what does all of this have to do with dementia and nutrition? The answer is….quite a lot.

To read more about using Essential Oils in Nutrition Therapy, click here:

http://alternativetherapiesfordementia.blogspot.com/

To reach Regina with your questions or feedback, please, click the link below and fill in the form.
http://www.lbdtools.com/contact2.php

Next up: Touch and Massage Therapy using Essential Oils – We’ll discuss the recommended oils to use in both therapies and oils for specific disorders / diseases, improved sleep, reducing stress, depression and anxiety as well as effective massage techniques you can easily learn.

References:

1. Kiecolt-Glaser JK, et al. Omega-3 supplementation lowers inflammation and anxiety in medical students: a randomized controlled trial.
http://www.ncbi.nlm.nih.gov/pubmed/21784145

2. Kiecolt-Glaser JK, et al. Depressive symptoms, omega-6:omega-3 fatty acids, and inflammation in older adults. http://www.ncbi.nlm.nih.gov/pubmed/17401057

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Neither Regina Hucks nor Helen and James Whitworth are doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.



Saturday, August 5, 2017

Traveling with Stress

We've been traveling, and experiencing multiple challenges. Every year we plan to leave Arizona and spend a good share of the summer in Washington State. Usually we leave in late May or early June. We make a leisurely trip north, taking a couple of weeks, with stops along the way to visit family and friends. This year was different. We weren't able to leave until mid-July and we didn't have time for visits on the trip north.

Just getting ready to leave overly warm Arizona was a challenge. Jim needed several unplanned-for doctors appointments first. We finally left with stitches in his arm where the doc had removed a skin cancer. Nurse Helen removed the stitches and that is now fine. The thermometer hit 120 degrees before we were finally able to pack up and go. We managed a marathon five-day trip in the motor home, driving 7-10 hours a day to arrive in Kettle Falls WA, up near the Canadian border for a family reunion I'd been helping to plan. Then we went from there to the family farm where my daughter lives for some more family time. Both were enjoyable but we ate something...or did something...and we've been laid low with digestive problems ever since. (I definitely do not recommend living in a motor home with two people with diarrhea!)

Jim's illness was more serious than mine. It was also more worrisome because anything stressful can trigger his Crohn's disease which has been thankfully dormant for over a year. Thus, I have had the honor of being caregiver when I wasn't feeling my best. I am blessed that even when he hurts, Jim is a gentle patient. Even so, we are both stressed and that of course, makes everything worse--and the likelihood of the Crohn's greater although so far, it is still quiet. The whole thing is a vicious circle that is hard from which to escape The difference for us is that we know that we will both recover and be able to move on with our lives. Our hearts go out to all of you who are dealing with less temporary situations.

We are now on our own in a favorite RV park. I am feeling better and we hope that soon Jim will too. From the time we left until now, we've not opened our laptops and so this is the first chance I've had to post. I think that is the longest I've gone without checking at least my email for over a decade! Sorry this is so late. I planned to post ever two weeks but it's been much longer. That's the way it is when life throws you curve balls.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, July 7, 2017

INCORPORATING ALTERNATIVE THERAPIES FOR DEMENTIA CARE

This week, our blogger is Regina Hucks. See the x blog to learn more about this very knowlegable woman.

Medicine is traditionally considered a healing profession, and modern medicine claims legitimacy to heal through its scientific approach to medicine.[1]

The marriage of science and medicine has empowered physicians to intervene actively in the course of disease, to affect cures, to prevent illness, and to eradicate disease.[2] In the wake of such success, physicians, trained as biomedical scientists, have focused on the diagnosis, treatment, and prevention of disease.[3] In the process, cure, not care, became the primary purpose of medicine, and the physician’s role became “curer of disease” rather than “healer of the sick.”[4] [5]

The medical definition of ALTERNATIVE MEDICINE is : any of various systems of healing or treating disease (as homeopathy, chiropractic, naturopathy, Ayurveda, or faith healing) that are not included in the traditional curricula taught in medical schools of the United States and Britain.

There is an enormity of evidence that Alternative Therapies are becoming the norm rather than the rarity.[1] Physicians across the globe are now integrating alternative therapies into their practices as pharmaceuticals become more dangerous to use, lessening the effect of traditional treatments.

When Alternative Therapies are used in combination with traditional medical practices, it is called complementary medicine, or more likely, INTEGRATIVE MEDICINE. Many Americans have never heard of Integrative Medicine, but this current movement has left its imprint on many of the nation's hospitals, universities, and medical schools in recent years yet has been common practice in many European countries.

The Duke University Center for Integrative Medicine is a classic model of integrative care. It combines conventional Western medicine with alternative or complementary therapies, such as herbal medicine, whole food nutrition therapy, acupuncture, massage and touch therapy, biofeedback, music – sound therapy, yoga, and stress reduction techniques -- all in the effort to treat the whole person. Proponents prefer the term "complementary or alternative" to emphasize that such therapies are used to complement mainstream medicine, and not used as replacements for standardized medical treatments.

With progressively degenerative disorders, such as Parkinson’s, LBD or Alzheimer’s, the treatment goals are to alleviate pain, decrease stress and improving quality of life. Due to the serious issues with many of the drugs when normally used to meet these goals, traditional medicine has been only minimally effective.

Alternative therapies are often welcome additions to the traditional treatment regimen. These less conventional modes of treatment have the advantage of being much safer than traditional drug treatment while often being even more helpful. Caregivers can also benefit from incorporating these therapies into their daily care regimes.

One of the most important things I could ever say to you is this: Integrative medicine starts with and depends upon a partnership between the patient, caregiver and the doctor, where the goal is to treat the mind, body, and spirit [3], all at the same time. If you are reliant on your physician for traditional care, please discuss incorporating Alternative Therapies into a daily care regime before starting anything new.

While some of the therapies used may be non-conventional, a guiding principle within integrative medicine is to use therapies that have some high-quality evidence to support them.

Read more in Regina's blog, Alternative Therapies for Dementia, including:

TREATING THE WHOLE PERSON

PROVIDING OPTIONS

WHAT ARE COMPLEMENTARY AND ALTERNATIVE THERAPIES?

HOW ALTERNATIVE THERAPIES WORK WITH CONVENTIONAL MEDICINE IN RELATION TO NEUROLOGICAL DISORDERS:

The Problems with Conventional Medicine

Commonalities in Complementary and / or Alternative Therapies

SCIENTIFIC EVIDENCE OF THE MIND, BODY, SPIRIT CONNECTION & YOUR HEALTH

References [1 through 5] can be found at the end of Regina's full blog.

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Saturday, June 24, 2017

Being Flexible

Because their job is so important to them, care partners often get caught in the trap of having much higher expectations for themselves than they do for anyone else. Wallowing in guilt and self-blame, they believe that if they lose patience, or don't do something as it "should be done," then they have failed. Everything that goes wrong must have been their fault. If they'd just done it better, or differently, or more, or.... This is a setup for stress, followed quickly by the behavior and psychological symptoms of dementia (BPSD).


Being flexible helps you to let go of those unrealistic expectations and escape the destructive guilt trap by accepting what is. Being flexible allows you to stop using failures as badges of shame and see them as learning tools, reminders, and yes, warnings. It is a process that involves:

  • Recognizing the problem or the failure, 
  • Looking for the lesson, 
  • Experiencing any guilt involved and making amends, 
  • Worrying a little and looking for a better way,
  • Taking action 
  • Trying again and again
  • Moving on.

Last night, George watched his favorite detective story on TV. Then I think he chased those bad guys all night long in his dreams. It was his favorite show...he's been watching it for years. -- Mary

• Recognize the problem. Sometimes that's easy. the PlwD expresses discomfort with BPSD. Often, it's less clear, as when the care partner is feeling overwhelmed. Sometimes it takes something serious such as a fall for awareness to come. More often it is simply a failure of some sort, like George's restlessness.

But I guess it is too exciting for him now. I know should have noticed this sooner. -- Mary

Feel the guilt and look for the lesson. Guilt's job is to trigger you into expressing your concern to anyone you may have hurt (including yourself!) and to point out the need to try a different way. Then, guilt's job is over.

Oh, well, I guess I'm not perfect! -- Mary

• Forgive yourself. Be as compassionate with yourself as you would be with anyone else. Making a mistake, even a serious one, does not make you a bad care partner. Like Mary, you aren't perfect. You don't have to be! Love yourself anyway. This self-caring will be mirrored by the PlwD as positive feelings towards them as well as yourself.

I remembered that someone in my support group talked about using DVDs instead of TV and I decided to give that a try. -- Mary

• Worry a little and look for a better way. A moderate amount of worry can lead to constructive, thoughtful evaluations of the situation, and motivate a person into taking action. What can I do? Who should I ask? What are my options? Is this the right one? Can I think of anything better? What else can I try? Then worry's job is done.

I ordered some with some old programs for him to watch instead. -- Mary

• Take action. This might mean that you'll set up a plan of what to do later. Or it may mean that you'll do something right away. But there needs to be a feeling of "doing" involved, even if it is only making a decision to do nothing. This helps you to let go of the guilt and worry and move on.

The first one I tried he hated. Then I put in Andy of Mayberry. He likes it and it doesn't make him restless. -- Mary

• Try, try again. If the first thing you try doesn't work, try again. This is a big part of being flexible too.

We are both happy campers!-- Mary

• Move on. Once guilt and worry have done their jobs, it is time to let them go. All too often a person hangs onto these and tries to use them to control the past and future. "If I can't do anything else, at least I can feel guilty or worry about it."

Flexibility may mean lowering your standards. Your house doesn't have to be spic and span. The PlwD may not need a shower every day, and so on.

It's got so I realize that I need 24/7 care for George, but our finances are limited. I checked with the state. They will help if he goes into a residential facility but not if I keep him at home. I did my research and found a wonderful assisted care facility. The problem is that the state will only pay for a two person room. I had so hoped that George could have his own room. -- Mary

Flexibility comes into effect with finances too. Dementia care is expensive. Even with help from the state or other sources, you may not be able to afford what you really want. Don't let this stop you from getting the best help you can afford. You can seldom have it all. Mary may need to accept a two person room in a good facility. She just has to make the best choice she can with the resources she has and then let go of what might have been and move on.

An a different subject, we are exercising our own flexibility by moving to a twice monthly blog for the summer. We will be traveling and researching for blogs becomes more difficult. Expect blogs around the 7th and 21st days of the month.

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Sunday, June 18, 2017

Medicaid Requirements for Long Term Care

(Italicized words are defined in the mini-glossary below.)

Residential care is expensive…more expensive than many of us can afford, but there is help in the form of Medicaid. Each state has different names for this and different standards, although some things are basic government requirements. If you have assets that you want to pass on to your children, you need to start planning early. Any assets you give to your family beyond minimal amounts in the five years prior to your “snapshot date” will still be considered yours when eligibility for financial assistance is determined. This includes trusts. Always consult an elder attorney before making these plans, but here is a simplified outline of what is offered.

The following Medicaid requirements take into consideration the Federal Spousal Impoverishment rules:
  • Countable assets of both spouses are totaled as of the date the institutionalized spouse enters a hospital or long-term care facility and stays for at least 30 days.
  • The community spouse can keep ½ of this total, up to a specified amount (from $23,844 to $119,220 in 2016 depending on the state). State rules differ. Some states allow the community spouse to keep up to the specified amount of the combined total instead of being limited to half.
  • Income of the institutionalized spouse is counted for eligibility, but in most states, that of the community spouse is not.
  • The institutionalized spouse can keep about $2000 (differs with state).
  • The rest of the institutionalized spouse’s assets must be ‘spent down’ before they will be eligible for Medicaid. This can be spent only in certain ways. For example, it cannot be gifted, except in very small amounts. Don’t wait to give your children anything you want them to have. If you wait too long, it may fall within the five years prior to your snapshot date and will be counted as still belonging to you as far as eligibility goes. Consult an elder attorney about the ways to give gifts, and the limitations involved.
Post eligibility requirements:
  • Community spouses with higher incomes may be required to help pay for cost of the institutionalized spouse’s care. (Varies with states)
  • If the community spouse’s income is less than the state’s minimum monthly maintenance needs allowance (MMMNA), then they can keep some or all of the institutionalized spouse's income. (up to $2002.50 a month in 2016)
  • The home equity of the institutionalized spouse must be less than the state standard ($552,000.00 to $828,000.00 in 2016). 
  • The institutionalized spouse is allowed to keep a personal allowance of $60 a month.
  • The institutionalized spouse’s medical costs are also considered.
  • The institutionalized spouse is required to pay the institution what is left of their income after deducting the amount the amount that can be kept by the community spouse, their personal allowance and the allowed amount for medical costs.
It is always a good idea to consult an elder attorney when planning for retirement, long term care, and upon a diagnosis of any eventually incapacitating disease such as Parkinson’s or any dementia. At that time, ask about Medicaid requirements for long term care and how they apply to your specific situation.

Be aware that these requirements can change as the lawmakers in Washington DC hammer out new rules for the Affordable Care Act.

Mini-glossary:

Assets: Anything of monetary value: real property, art work, savings, pension plans, stocks and bonds, cash, etc.

Community spouse: the spouse who is NOT living in a hospital or residential facility.

Elder attorney: A lawyer who specializes in laws concerning the elderly.

Federal Spousal Impoverishment Rules: Medicaid rules which provide special protections for the spouses of Medicaid applicants to make sure that they have the minimum support needed to continue to live in the community while their husband or wife is receiving long-term care benefits.

Home equity: The  fair market value of a home, less debts, divided by the number of owners. Thus the institutionalized spouse’s share of a $900,000 mutually owned home where $100,000 is still owed, would be $400,000.

Institutionalized spouse: the spouse who is living in a hospital or residential facility.

Medicaid: Called by different names in different states. There are basic federal requirements and payments but states can add to these.

Minimum monthly maintenance needs allowance (MMMNA): a minimum monthly income standard for the community spouse, set at one-and-one-half times the Federal Poverty Level for a single person living alone. ($1,991.25 to $2,980.50 in 2016)

Residential care: Care in a hospital or an assisted living, memory care, rehabilitation or nursing home facility for at least 30 days.

Snapshot date: the date a person enters a hospital or residential care facility for a stay of at least 30 days.

For information about Medicaid requirements for long term care specific to your state, go to Find an Attorney, click on your state, and then "Key Medicaid Information" for that state.

For more information about Spousal improvishment standareds:
2016 SSI and Spousal Impoverishment Standards

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors or lawyers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's or lawyer's advice.

Saturday, June 10, 2017

Regina Hicks, Alternative Therapies Consultant

Over the course of the next few months, our Alternative Therapies Consultant Regina Hucks will be guest writing an occasional blog about the use of alternative therapies in dementia care. Raised by a university professor of quantum physics and a master chef, it’s no wonder Regina chose to study the science behind essential oils and the importance of whole nutrition. She holds certification in both Clinical Aromatherapy and Therapeutic Massage, with a focus and extensive research on the chronically ill, dementia, depression and anxiety disorders. Regina teaches the importance of whole nutrition in promoting cellular health, emotional stability and physical healing as well as the benefits of alternative therapies for wellness in everyday life.

Feel free to email your questions to Regina through this link or at the end of this article. Please fill out the short questionnaire so that she can provide a more complete answer.

AN INTRODUCTION TO ALTERNATIVE THERAPIES FOR DEMENTIA CARE:

We do not advocate the use of alternative therapies as your sole source of treatment. We are here to inform, educate and empower you and your charges. Alternative therapies provide benefit to both patient and caregiver. They can work in conjunction with pharmacology to enhance treatment while providing positive and beneficial results. On their own, they have been shown to alleviate, and in many cases, eliminate a multitude of symptoms. Unlike many pharmaceuticals, alternative therapies do no harm. Side effects, if any, are negligible.

We suggest working with your physician to incorporate alternative therapies into your care plan. Many physicians find value and embrace their use while others are strictly by the book. Alternative therapies have been used for centuries, it has only been in the last 20 years or so that our modern medical community has begun to see their value. Physicians, hospitals, hospice and dementia care facilities are relying more and more on the use of a non-pharmacological approach.

I highly suggest taking a look at www.lbdtools.com . Authors, Jim and Helen Whitworth wrote their award winning books and created this website to help caregivers better understand Lewy body dementia and how to provide appropriate care for their patients and loved ones. The Whitworth’s will tell you, caregiving isn’t a job, it’s a labor of love, personal sacrifice and commitment that can take its toll on your physical, mental and emotional wellbeing well beyond what you can imagine.

A positive side to incorporating Alternative Therapies into your caregiving routines is the impact it has on the caregiver over and above the impact it has on the patient. Many of these therapies require physical contact, others, a connection on the spiritual and/or emotional level. As a caregiver, this contact with the therapies may provide you with the same or similar positive experience your charge will have.

While there are a multitude of therapies, we will cover those therapies that:

  1. Are evidence based in nature and have been shown to have great impact on the health and well being of the dementia patient as well as their caregivers
  2. Are a range of affordable services provided by licensed, trained therapist with a history and extensive experience working with dementia patients
  3.  Are therapies (most) that can be taught to caregivers who desire to implement them in the care of their patients or loved ones
  4. We have researched for higher than average results with recommendations for specific products that meet the highest standards in the industry
  5. Have been found to have a significant impact on behavioral and physical problems found in patients suffering from dementia.

Please visit my Healing Things blog  for upcoming weekly articles covering:
  • Incorporating Alternative Therapies
  • Essential Oils and their role in dementia care:
    • Essential Oils for Nutrition Therapy
    • Essential Oils and Massage Therapy
    • Essential Oils and Touch Therapy
    • Essential Oils for Aroma Therapy - Stress Reduction, Improved Sleep, Memory and Cognition
  • Music Therapy
    • Healing Frequencies, Tones and Vibration – Impacting the body on a Cellular Level
    • Music and Memory
  • Art Therapy
    • Memory and Motor Function
    • Color and How it Relates to Dementia
    • Fractal Therapy
  • Meditation and Stretch Yoga
  • Nutrition Therapy – Dealing with Toxicity
  • CBD Oil – Researching the Best, Purest, Cleanest and Organically Grown Product and the Positive Impact on Dementia and Overall Health.on Dementia and Overall Health.

To reach Regina with your questions or feedback, please, click here below and fill in the form.

Friday, June 2, 2017

The Five Senses

The following is a chapter in our newest book, to come out this fall. More about it in later blogs.

senses: Sight, smell, hearing, taste, and touch; faculties by which the brain receives external stimuli.

The senses are the brain's information gathering system. When they are damaged, the information they deliver may be distorted from the beginning. Dementia itself doesn't damage the senses. Age can, or other illnesses can, but dementia doesn't.

However, attention deficit is a common dementia symptom. It limits one's ability to narrow their focus and pay selective attention. Everything is giving equal billing, making it difficult to choose what to ignore what to zero in on. This broader view sends fuzzier, less accurate information to the brain for processing, even when the senses themselves are not damaged. (reference)

In communication, when words and non-verbal cues picked up via these senses differ, it is human behavior to believe the cues over words. That's because words are symbols that must be decoded, requiring an extra processing step. Non-verbal cues are not so difficult to decode and therefore are processed more quickly.

It is important for a care partner to know not only what dementia has taken away, but also what is left to work with. For example, as language skills wane, a PlwD will turn to using non-verbal cues to communicate their own needs and wishes instead of words.

Vision. As a person ages, one's peripheral vision tends to narrow. Dementia tends to cause this to happen sooner. Thus a PlwD will probably have poor peripheral vision and as the dementia progresses their field of vision narrows to a small area right in front of them. They need you to stand inside their field of vision, but off to one side a little so that you don't block their whole field.

The quality of vision still left also degenerates with age, other health issues, and possibly even with dementia. Things that were once clear can become blurry, faded and distorted. Use bright color and contrasts to help with this. (Reference)

Hearing. Dementia does not make people hard of hearing and using a loud voice will not improve their ability to hear. The louder a voice, the more distorted the sound and the less it will be understood. However, many people with dementia are of the age where being hard of hearing is common. The higher registers tend to be more affected more than the low ones. Use a normal voice, pitched as low as possible, to have the best chance to be understood.

Unless some other problem has caused hearing damage, a person with dementia will usually be able to hear no matter how far they are into their journey--and may be able to comprehend as well. Use care with what you say around a PlwD who appears to be comatose or inattentive. Inappropriate words can cause great agitation.

Smell. There is some early research suggesting that Parkinson's disease (PD) starts in the nose, not the midbrain. An early PD symptom is loss of smell, which supports this idea. (Reference) LBD care partners often name loss of smell as an early symptom even when PD wasn't involved. The good news is odor receptors (olfactory nerves) reside in many areas of the body besides the nose, including the skin. This means that smell-based alternative therapies may still be helpful. (Reference)

Touch. Touch seems to be a long-lasting sense like hearing. This is especially true for the more sensitive areas of the body: lips and tongue, fingers and palms, soles of feet and genitalia. That's why you will see a PlwD touching things or putting them in their mouth. A person can also continue to feel and enjoy touching from others. Use a gentle but firm hand. Avoid a light feathery touch that might cause unpleasant feelings of tickling or even "bugs."

Taste. PlwD often have altered food preferences. Dementia may take away the ability to identify and remember tastes. But typical aging is even more of a problem. Like vision, the efficiency of the taste buds fades with age. Thus a person will tend to prefer sweets or other foods with strong tastes. The ability to enjoy food and the cultural processes around eating last however. This enjoyment can be increased when meals are made into a special time of relaxed togetherness.

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, May 26, 2017

Dopamine: For More than Mobility

About half of those dealing with LBD also have Parkinson's disease (PD). Anyone dealing with PD soon learns about the need for adequate dopamine.

Dopamine has several functions in the brain, including:
  • Facilitating mobility. This is the function that PlwPD are most aware of. Without adequate dopamine, symptoms such as slowness of movement, tremor and stiffness occur.
  • Reward-based behavior. Anything we consider a treat will increase the secretion of dopamine which facilitates positive emotions. Certain drugs also cause an increase of dopamine, which can make them addictive.
  • Executive functions. In the cortex of the brain, dopamine and acetylcholine play a delicate balancing act that is seldom a problem until cognition becomes an issue.
  • Pain management. In multiple areas of the brain, dopamine acts to decrease pain. Too little dopamine results in more pain, as in restless leg syndrome and an increases susceptibility to pain for PlwPD.
Drug issues. The body protects the brain with a barrier that prevents most substances from passing from the general blood stream into the brain. This is called the blood brain barrier (BBB). Dopamine by itself cannot cross the BBB and so doctors have to find ways around it.
  • Levadopa is a precursor of dopamine that can cross the BBB. Once it is inside the brain, it transforms into dopamine. While levadopa works well for mobility, its effect on mood is limited. Thus, depression is a common PD symptom not treated well with levadopa.
  • Cognition. When PD advances to PDD, with decreased acetylcholine levels, levadopa further interferes with the acetylcholine-dopamine balance and increases already present cognitive issues like hallucinations and slow thinking.
  • Dopamine agonists are drugs that mimic the action of dopamine and can cross the BBB. These drugs appear to have a better effect and may improve depression. However, when dementia is already present, they can increase cognitive dysfunction and compulsive behaviors.
Outside the brain, dopamine has many other functions. It regulates:
  • In the cardiovascular system and kidneys, dopamine acts to increase sodium and water retention, increase heart rate and constrict your blood vessels. Inadequate dopamine can cause low blood pressure and sluggish circulation.
  • In the pancreas, dopamine's job is to regulate insulin production. Too much insulin triggers the release of dopamine, which may also may find its way into the brain where it functions as a reward. Eating high carbohydrate "comfort food" is an example of eating to produce higher levels of dopamine.
  • In the immune system, dopamine retards lymphocyte activity, acting as a brake for when the immune system gets out of control and attacks healthy cells. Inadequate dopamine would result in increased levels of diseases such as arthritis.
  • In the GI tract, dopamine again acts as a brake, reducing gastrointestinal motility and protecting intestinal lining. Too much dopamine can cause constipation. Too little might cause diarrhea and sores on the gut lining.
And so the bottom line is that when a person has PD or PDD, any of these other issues may come into play.  (Reference) (Reference)

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, May 19, 2017

The 2017 Arizona Alzheimer's Consortium Conference

Yesterday we attended the annual Arizona Alzheimer's Consortium Conference. We started out on a rather negative note. We left in plenty of time to enjoy the advertised pre-session Continental breakfast. But, long story short, we went to the wrong place MILES away from the right one! By the time we finally arrived, the speaker had already started. At our age, such incidents always end with us asking ourselves, "Is this a sign of impending dementia?"

But on to serious stuff. This is a conference directed at scientists, which we definitely are not. It is also strongly focused on Alzheimers rather than LBD. Nevertheless, we always come away from this conference in a hopeful frame of mind. This wonderful group of nine Arizona institutions collaborate to do research that a single one would find difficult if not impossible, reaching out to other institutions in the country and the world as well. Every year, they have a special focus for their conference. Several years ago, it was actually Lewy body dementia and other less common dementias. Another year, it was caregivers. This year it was students. Most of the presenters this year were students and they were great.

Of course, much of what we heard went over our heads. But we did learn that there are some amazing minds out there working on learning how to identify Alzheimer's early on. That's exciting because what they learn about AD will be translated to others like LBD very quickly. Here are some highlights of the conference:

Precursors: Several presenters talked about trying to discover what the precursors of Alzheimers. They weren't looking at external things like toxins, but on changes in the molecules themselves and what they do to other proteins that turns them into the plaques and tangles of AD. What seems to drive the changes? How common are they? Which changed molecules are present in people known to be at risk for AD and which ones aren't? And so on. The idea is that if they can discover these precursors, then they can find a way to stop them. Further, r researchers can use the methods they develop to look for precursors of LBD and PD and other neurogenic diseases in the same way.

Drugs. Most of us are aware of the damage anticholinergics can cause for anyone with LBD or even at risk for LBD. There's also a lot of the research that shows that the elderly who use these drugs are at greater risk than those who don't. A young researcher (a high school student!!) reported on his findings that middle aged people (40-50 year-olds) who used anticholinergics are at low risk for dementia. This was a primary finding and needs a lot more research, but quite interesting! Another researcher reported on findings that antidepressants like Prozac are fairly safe to use with dementia and in fact, may retard the development of AD.

Clinical trials. One of the roadblocks to research is the need for participants. Naturally they need people with the disease but they need healthy folks too, for their controls. We'd recommend that everyone who can should sign up for the Alzheimer's Prevention Registry. We also learned about the GeneMatch program that they have to help researchers working at the gene level. If you are 55-75 years old, live in the US and don't have a diagnosis of cognitive impairment, you are eligible to sign up for this too.

Caregiver care. Finally, we talked to a group called H.O.P.E. for building Health, Optimism, Purpose and Endurance in family caregivers and people with dementia. We were so pleased to see such a caregiver-oriented program represented at this conference. Their focus for the conference was anticipatory grief...which anyone dealing with LBD knows about...or should. They recommended the book, Loving Someone Who Has Dementia by Pauline Boss. "It's the book every dementia caregiver needs to have. It helps you deal constructively with that ambiguous loss that happens as your loved one gradually disappears in mind but is still there in body." Yes! We agree. It's a book you need in your library.

Oh, and we did get something to eat besides the muffins that we stealthy nibbled on while listening to the first speaker. They had a great lunch buffet with lots of healthy food and some decadent little desserts. Interestingly enough, they also had sodas. Have you heard about the latest research that people who have just one carbonated diet soda a day are three (3!!) times more at risk for dementia? And there's more research showing that drinking sugary sodas is linked to dementia too. Scary, huh? (More about this later.)

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Saturday, May 13, 2017

Helpful Sites for Care Partners

We recently received two lists of links of for care partners that we believe are worth passing on. The first is from Natalie Kelly, who represents a group of educators and librarians called Forever Curious. The commentary is mine:

Transportation Resources for Older Adults
A very thorough brochure from always helpful Eldercare.gov that lists many suggestions for tranportation once a person can no longer drive. It also lists some agencies to contact for more suggestions in your area.

Selling a Home with Modifications for Older Adults
This valuable group of articles offered by Home City Real Estate are about so much more than selling a handicap-modified home. Anyone with a loved one whose daily living skills are challenged living at home needs to read this. It covers the types of modifications a person can do to make living easier, how these modifications will affect resale value in different areas of the country and how to do these modifications to avoid damaging resale value.

Fall Prevention
A brochure from the National Council on Aging that offers lists of programs to prevent falls by area and several lists on tips for preventing falls. The information is good but the links require patience--they are slow to load.

Assistive Technology Buying Guide
This extensive list of articles was compiled by RetailMeNot for their online shopping advisor, The Real Deal. They accurately advertize it as "Everything you need to know for buying assistive technology smartly." The articles cover everything from what is Assistive Technology and the equipment involved to where to find the best deals, and even how to get at least part of the cost covered. A great read before you buy any of this kind of equipment.

Special Needs Seniors: Planning for the Future of this Vulnerable Population
Retiring Wise is a blog by OneReverseMortgage of Quicken Loans. This particular blog entry discusses financial, medical, communication, and other concerns that seniors face as they age, with an extensive list of links to national, state and private agencies that offer assistance. This article also addresses the advantages of planning ahead, with information about Special Needs Trust, Long Term Care Insurance, and other things to consider early on. A must read, the earlier in the dementia journey the better.

Legal Guide for Newly Disabled Seniors
This article by Just Great Lawyers discusses the issues that every person with a disability and their care partner faces, including dealing with the change to being disabled, applying for services, protecting one's legal, financial and medical rights and more, with links galore for each subject. Every dementia care partner should read this no matter where they are on their journey.

Brain Support Network Blog
The second list comes from Robin Riddle and the Brain Support Network. I've written about their work in helping people donate brains, but now they have a blog that offers lots of information for care partners. Check it out. If you'd like to have the blogs emailed regularly to you, join their email list for LBD and general caregiving. Here is a list of some of the recent blogs:
* "Living Guilt Free" - notes from a one-hour talk
* "Respite Care: Finding and Choosing Respite Services"
* "Grieving Before a Death: Understanding Anticipatory Grief"
* "How do we cope with anger as a caregiver"?
* "13 Secrets That Make Caregiving Easier"
* Urinary problems in Parkinson's - webinar notes
* Complementary and alternative medicine in Parkinson's - webinar notes
* "Beyond Alzheimer's Disease" (including LBD) - webinar notes
* Overview of LBD symptoms and treatment - webinar notes
* Johns Hopkins Overview of Dementia with Lewy Bodies
* Five E’s of empowered living with chronic illness

Happy reading!

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, May 5, 2017

The Value of Exercise

We've all heard and read about how exercise is so important as we age, and how it continues to be important for anyone dealing with dementia, both the PlwD and the care partner. Exercise increases blood flow...and oxygen...to the brain, increasing general functioning. But there is so much more!

Exercise is a great stress reliever. It immediately increases the levels of serotonin, noradrenalin, dopamine and endorphins.
  • Serotonin is a feel good chemical that fights depression, common with most dementias, most chronic diseases--and most caregivers.
  • Noradrenalin improves awareness and increases the ability to focus. Apathy, inattention and a short attention span are common dementia symptoms, all involving awareness and focusing.
  • Dopamine facilitates small motor function and decreases depression. Dopamine is one of the chemicals targeted by Lewy bodies, making depression a chronic LBD symptom. (And of course, dopamine also facilitates small motor function, decreasing the tremors, slowness of movement and stiffness of PD.)
  • Endorphins are natural pain relievers. Dementia is mostly a disease of the elderly, who have other illnesses such as arthritis. However, traditional pain relievers are often not recommended due to gastric discomfort or drug sensitivities. And there's more yet! 
Exercise increases cognitive function. It immediately increases the level of Brain Derived Neurotrophic Factor (BDMF), a growth factor chemical that facilitates new brain cells and maintains long term growth.
  • BDMF increases a person's ability to maintain focus, or to switch their attention to something else. Most PlwD have a very short attention span unless they obsess, in which case, they can't stop easily.
  • BDMF may also increase a person's ability to access abstract thinking, allowing them to move out of the here and now and to imagine new situations, and to be more creative. (This hasn't yet been tested on people.)
Finally, research has shown over and over that regular exercise decreases the risk of cognitive dysfunction in the future. That is, it won't stop the dementia that's present, but it may prevent dementia from showing up in the future...and it may slow down any that's present. It doesn't really matter what kind you do. Just exercise. Do whatever type you enjoy most. Do it with the PlwD. Do it with family. Do it with friends. Do it by yourself. Just do it!

Thanks to Wendy Suzki for this information.

* Acronyms:
BDMF: Brain Derived Neurotrophic Factor
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, April 28, 2017

Dealing with Shadowing

One of the behaviors that can be very difficult for a care partner to deal with is shadowing, that is, constantly following, often very closely, and getting very anxious if the care partner goes into a different room, outside, or shuts the door to use the bathroom.

Charlie follows me everywhere. I can't even go to the bathroom by myself anymore. I hate it--it actually makes me feel claustrophobic. I tell him to stop, but he just ignores me. Marion

To deal with shadowing effectively, Marion needs to recognize the cause and address it. Like most BPSD, shadowing is driven by negative emotions: anxiety and fear. Charlie is not trying to irritate or control her. Address the fear, not the behavior! All of the suggestions in last week's blog on defusing negative emotions are applicable.

As Charlie's memory and perceptions become faulty, Marion becomes the one safe and known aspect in Charlie's life...his life raft in a sea of uncertainty. Anything she can do to maintain structure and stability will help. Last week's blog names several of these, such as establishing rituals and routines. In addition a care partner can:

Develop some alternative means of orientation such as identifying notes on furniture and doors.

Install white board for daily updates and messages so that the PlwD will be used to using these when calendars and clocks become useless. Using this can help to maintain orientation: "Today is Wednesday, June 1" or "I'll be at golf until 2pm."

Use distractions such as a favorite snack, a meaningful activity or looking at family photos. When the PlwD is past doing these, she can offer him a squeeze ball or a brightly colored scarf to hold, with a "Please hold this for me, honey."

Play recordings of the PlwD's favorite music or of the care partner speaking reassuring words.

Ramp up verbal reassurance and physical touching. Do this all day long, not just when the PlwD is hovering.

Try using an egg timer for short absences. Set the timer in front of the PlwD, and give them something to hold, like a book or a napkin. Say, "I'm going to the bathroom and I'll be back when the bell rings. Your job is to watch the clock." Don't say anything more--that is confusing! Set the timer and go. Make sure to maintain trust by being back on time! Then, reinforce: "See, I'm here even before I said I'd be back!"
If you still leave the PlwD alone, program a simple cell phone with your number on an easy dial button and give it to them before you leave. This will help the PlwD feel less isolated and deserted. (Even so, expect lots of calls...)

Marion also needs to take care of herself so that she doesn't radiate negative emotions that Charlie will mirror with increased shadowing. As care partner you need to:

Watch your attitude, and work to avoid your own negative feelings. "It's the disease, not my loved one" is a good mantra. So is "It's a symptom, not an intentional irritant."

Give yourself a time out if you begin to feel irritable, even if it is just turning your back or closing your eyes. Take a deep breath, repeat your mantra to yourself and then come back and give the PlwD a hug.

Build free time into your schedule, using the friends/family/daycare routines, the timer, white board and phone. Maintain routine and rituals religiously--for your sake, as well as the PlwD's!

Use some of that free time to attend a support group, and use it to vent and ask for help.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, April 21, 2017

Dealing with BPSD: Hallucinations

Last week's blog was about how to defuse negative emotions. That's an important basis for dealing with most behavioral and psychological symptoms of dementia (BPSDs).
  • These emotions often drive the resulting acting-out behaviors such as aggression or withdrawal.
  • Without these energy-robbing feelings, the PlwD has more personal reserves for dealing with the dementia symptoms themselves, such as hallucinations.
There are also ways to deal with each symptom as well. Today's symptom is hallucinations.

My dad, Hank, has LBD. Lately, he's been having a lot of hallucinations. Most of them are harmless and manageable--workmen in his house or on his property. But some aren't. How do I convince him that there really isn't a man in his house holding a gun to his head? He thinks I'm nuts when I tell him it isn't real. Someone suggested that I use a spray bottle to get rid of the hallucinations, but that didn't work. Dad just thought it was silly. His doctor suggested Namenda. I plan to research Abilify too. -- Maude

LBD tends to attack a person's thinking skills even before it affects memory. When Hank first started getting hallucinations, he may have known that they weren't real. But as his ability to think abstractly fades, he can no longer tell the difference between hallucinations and reality. They are HIS reality and he is stuck with them.The more Maude tries to convince him of HER reality, the more frustrated, hurt, or angry he will get. (Think about how you'd feel if someone tried to convince you that you didn't really live in your home. Sounds absurd, doesn't it? Insulting, even, for them to even think they could do this. Well, that's how Maude's father feels when she tries to spray away his reality. "How silly and insulting!" he thinks. Maude has tried some things that don't work well.

These is what you can do:
  • Ask if the people are bothering your loved one. If they aren't, they are not the one with problem. YOU are. Relax. Let it go. Learn to deal with the hallucinations by accepting them as a part of the disease. (See previous blogs on hallucinations and delusions.)
  • Be willing to join the PlwD's reality and "play along" enough to get rid of an annoying or frightening hallucination. (See previous blogs on improv theater.) Do more or less what you would do to get rid of the situation if it were real. For instance, Maude can tell the man to take his gun and leave. Stand at the door and usher him out. Close the door. (Understand that this just takes care of this time. The "man with a gun" can show up again. Even if you took the gun away, her dad wouldn't remember that.)
  • Do consider dementia drugs like Aricept, Exelon, Razadyne and Namenda. They address more than just cognition. If your father also has Parkinson's, ask his doctor to review his PD drugs. They can also cause hallucinations. But your accepting attitude will help more than anything.
  • Be careful with antipsychotics like Abilify. Research shows that while it is not as dangerous for a PlwD as Haldol, it is more dangerous than Seroquel and about as dangerous as Resperdal, Zyprexa and Geodon. All of these drugs except Haldol are "second generation" antipsychotics often prescribed for BPSDs. All of them should be monitored very carefully to assure that they don't cause more problems than they solve. (reference)
  • Do take care of yourself. The PlwD mirrors your feelings. A calm, healthy, happy caregiver means fewer dementia symptoms, including hallucinations. (See previous blogs on dealing with emotions and on caregiver care.)
Future blogs about dealing with BPSD will be on shadowing and being in the moment,

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Saturday, April 15, 2017

Defusing Negative Emotions

Last week's blog was on emotions in general. If you haven't read it, or the previous one on thinking, please do so before you continue. Emotions are usually either negative or positive. The stronger negative emotions drive evasive behavior--often acting out behavior. The more subtle positive emotions bring comfort and peace. The goal is to avoid or defusing the negative emotions while encouraging the peaceful ones.

Negative emotions include anxiety, anger, confusion, frustration, fear. As dementia progresses the ability to judge more or less decreases and so a PlwD tends to feel most emotions at their highest level. I'm not just a little frightened; I'm AFRAID. I'm not sort of anxious; I'm FILLED WITH ANXIETY. I'm not irritated; I'm ENRAGED. The longer my feeling lasts, the more intense it gets. These are the feelings that drive the behavioral and psychological symptoms of dementia (BPSD). Therefore, it is in everyone's best interest to avoid triggering these feelings whenever possible, and to defuse them quickly when they do occur.

Negative emotions are usually a response to stress. The problem is that the PlwD may no longer be able to connect cause and effect--this requires abstract thinking. Thus, they may not know why they are acting angry, or frightened. Thus, the care partner's job is to recognize and avoid such stresses whenever possible and to end them as quickly as possible when they do happen.

You can't use reason or time-related solutions. Dementia takes away a person's ability to reason and which requires abstract thinking. It also keeps them in the here and now--they don't understand "later." But there are many things you can do. Start preparing as soon as you have a diagnosis...or sooner! Don't wait until the PlwD's abstract thinking is all gone to start.
  • Add structure to the PlwD's life by establishing daily and weekly routines and rituals. Structure promotes positive the feelings of comfort and safety and limits negative feelings of confusion and fear. The sooner in your journey you do this, the easier it will be to do.
  • Routines should include events that encourage sociability such as visits from family and friends (one at a time). Start adult daycare before it is needed, so that it can be accepted and even enjoyed.
  • Routines should also include meaningful activities, such as folding clothes, doing dishes, working jigsaw puzzles or playing a card game.
  • Add simplicity. Remove clutter, unnecessary knickknacks and furniture. Like structure, simplicity replaces confusion and fear with feelings of comfort and safety.
  • Develop a play list of the PlwD's favorite music. Music is very calming and thereuptic.
  • Learn what things are most likely to cause negative emotions for the PlwD, and avoid these whenever possible. (These will be different with each person. Dave may be afraid of dogs, Mary may get upset when she is rushed, June may do very poorly in crowds.)
In the present:
  • Continually use verbal reassurance. "I love you. You are safe. Everything is/will be OK." Compliments and positive messages need to be voiced over and over to be really effective. (It takes 6--or more--positives to counteract a negative.)
  • Practice hugging and loving touch. (Custodial touching doesn't count. That is, helping them onto the toilet, into a chair or into bed don't count. The touching needs to be volunteered because you want to, not because you need to. (Remember the 6 to 1 rule.)
  • Maintain routine and rituals religiously. Always have friends in on the same day at the same time. Always make folding clothes, or doing dishes, or whatever, the PlwD's job. Always ...
  • Make no unnecessary changes of furniture or decor. Replace old clothes with similar ones. Don't offer "new" foods. Variety is no longer fun!
  • Recognize acting out as a stress-related response, and look for the trigger, then deal with that, not the behavior.
  • Use music as much as you can, starting with that play-list of favorite songs, and going on to others that the PlwD enjoys. Music in the house is soothing and brings about positive emotions.

Finally, take care of yourself. An overextended, sleep-deprived, ill, or unhappy caregiver is a strong stressor for the PlwD. They will mirror your feelings and add their own feelings of inadequacy and fear of desertion. (See other blogs on caregiver care.)

Next week, we start talking about using your knowledge about emotions with specific symptoms.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, April 7, 2017

Emotions Drive Behavior

Last week's blog was about thinking skills. Because we use abstract thinking to evaluate and make decisions about emotions, it is important to know about the different kinds of thinking. If you haven't already read last week's blog, please scroll down and read it now.

This week's blog is about emotions in general. Understanding how they work can help the care partner deal better with the often frustrating behavioral and psychological symptoms of dementia (BPSD).

Emotions drive behavior. This is the case with everyone. We run away or relax, depending on the emotions we have and how we chose to respond to them.

Negative emotions are motivators, and can be quite stressful. These emotions cause the body to secrete those "fight or flight," stress-increasing hormones. They are usually intense, drawing and holding one's attention, and demanding change, and pressing for movement away from the discomfort they cause.

Positive emotions are calming. They cause the body to secrete "feel good," stress-reducing hormones. These emotions are centering, bringing about relaxation and calmness. They are seldom intense; instead their mildness allows a person to stay in a comfortable space.

The ability to feel emotions does not fade. It lasts to the end of life. Apathy can weaken emotions, but they never completely disappear. As the ability to think abstractly fades, emotions take a greater part in a person's decision-making. That is, the PlwD acts on feelings without considering their validity.

It takes about six (6) positive events to counteract one (1) negative event. This is because positive emotions tend to be subtle and negative emotions tend to be intense. Ex: Six complements to counteract one complaint. Because in our culture, we tend to discount positives, it could take even more!

There are drugs that can affect emotions, but they usually have other actions too. Therefore, try non-drug options first. Even if they don't work alone, they will often decrease the amount of drugs needed for the effect you want.

With these principles in mind, a care partner can work to avoid or remove anything that might cause negative feelings while preserving or bringing about anything that might cause positive ones. The more comfortable and relaxed a PlwD is, the fewer BPSD they will have. That's actually the basis for stress management: decrease negative feelings and increase positive feelings.

Of course, it isn't always easy to identify what will elicit the negative feelings. As cognitive ability fades, emotions become more important as they replace reasoning. Normally, a person filters emotions through a variety of thought processes:

An event or thought causes an emotion, followed by an action based on the emotion. Mary, Joe and Dana see a tiger chasing a child on TV.
  • Mary, who does not have dementia, has an automatic fear response to the virtual event, but she immediately uses abstract thinking to determine that the tiger is not real and then to makes the decision to reject the fear and relax.
  • Joe, a PlwD*, has lost the ability to tell the difference between virtual and real event. He perceives the tiger as real--and becomes very frightened and agitated.
    Helpful hint: An understanding attitude, reassurance that the situation on TV had a happy ending, and lots of TLC is in order. Don't tell the PlwD that is isn't real. That just makes the situation worse. In the future, avoid exciting TV shows.
  • Dana, with MCI*, is able to identify the tiger as virtual, but can't get rid of the fear. It was the first piece of information she had about the tiger and she is stuck with it. The fear becomes free-floating agitation, an unpleasant negative feeling that is hard to defuse.
    Helpful hint: This is why even a person with even mild dementia should avoid exciting TV shows.
Interactions are often emotional. Someone says something that feels insulting to Mary and Joe.
  • Mary uses her thought processes to determine that she isn't sure about what the person said and so she asks for more information. The new information shows that the comment was meant as a compliment.
  • Mary may also decide that her first feeling was accurate, but didn't need action. For instance, the comment was meant to be insulting. She can FEEL insulted without acting on it. She can choose to ignore the feeling and move on.
  • Joe hears the insult and is stuck with it. He accepts what he hears literally and reacts automatically. He is unable to evaluate its validity, consider the need for additional information, or choose to ignore the feeling.
    Helpful hint: Distraction can often be a good tool for helping a loved one drop a negative feeling and move on.
Next week, more on emotions.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, March 31, 2017

What Dementia Does to Thinking

Thinking can be divided into two types: abstract and concrete. Good thinking requires a balance of both. Children start with concrete thinking and as their brain develops, they learn to add abstract thinking.

Abstract thinking uses executive skills (judgment, reasoning, organizing, etc.) to develop concepts and ideas, and to reason. Abstract thinking expands into things that aren't material-- like time, possibilities, generalizations or comparisons. When a person becomes too abstract, they lose clarity. Politicians are good at being abstract--at saying a lot without saying much at all! Abstract thinking is about concepts, ideas built in the mind.

But as dementia progresses, executive skills are lost. This is especially true with LBD, where the loss of these skills often occurs before memory loss. When this happens, the PlwD is left with concrete thinking. Concrete thinking is based on information derived from the senses, what the person can see, hear or touch this minute.
  • Is literal: Idioms and generalities don't compute. A "hot potato" is just a very warm vegetable and "man" is about a specific man, not men in general.
    Application: Be careful how you word your requests or comments. What you actually say is what the PlwD gets, not what you may mean.
  • Is two-dimensional. Something either is or isn't. It is here or not here (i.e., nowhere), now or not now (i.e., never), mine or not mine (no one's).
    Application: Word your communications so that they are in the present, not the past or the future. "Let's go to the car." not "If we leave now, we can get home in time to watch your video."
  • Is single-minded. Can only focus on one issue at a time. Leads to obsession.
    Application: Distraction, deflection and bribes work well. If you can get the person to change their focus, they will let go of the obsession, at least for the moment. With LBD, memory may still be intact and so they may return to an obsession however.
  • Is closely connected to emotions, which aren't material, but can be felt. Unlike thinking, emotions remain.
    Application: Take careful notice of emotions, both yours and the PlwD's. Residual emotions, those left over from past events, will be the first piece of information a PlwD receives about an event.
  • Is based on the FIRST information received. If a person sees a dog and experiences fear, the dog is the cause of the fear--and thus, dangerous. The fear is often residual, i.e., from a past experience, but that doesn't matter.
  • Application: Try to discover the residual feeling that led to the conclusion, and work with that, not the conclusion itself.
    Is inflexible. Once something is decided upon, that's the way it is; there is only "what is," not "what might be."
    Application: Do not try to change a PlwD's mind. This is futile. Instead, align with the residual feeling, join the person's reality and move the action from there.
    Is impulsive. Without the ability to see cause and effect, there is no consideration of future consequences. If the thought arises, the action follows.
    Application: Refuse to be upset by inappropriate words or actions. Distract and deflect instead.
    Is about instant gratification. Without the ability to see the value of future benefits, now is all that counts. A spoonful of ice cream now is better than the promise of a whole bowlful later.
    Application: This can be used a distraction or bribe. Bribes work well with PlwD. With children, bribes can backfire when the child learns to manipulate. But dementia has decreased the ability to learn and so the bribe simply serves as a distraction.
    Lacks empathy. Without the ability to consider other ways of seeing an event or to oneself in the other's place, it's all about "me."
    Application: Don't expect the PlwD to be able to see that their behavior or words are painful to you. They are not trying to hurt you. In their view, they are the only one affected, the only one in pain.

Friday, March 24, 2017

Driving, Part Two: Making Quitting Easier

Last week’s blog was about how to know when it was time for the PlwD* to quit driving. This week’s blog is about how to make that happen when the time comes.

Right after John’s diagnosis, we talked about how LBD* would gradually erode the abilities he needs to drive safely. Once a month we’d go through those red flags and see how he was doing. The first time I answered “yes” to a question, he didn’t. But the second time, he did…and then he handed me his keys. “I guess it’s time,” he said.  - Janice

This is the storybook answer that we all hope for and seldom get. It usually goes more like this:

Don loves to drive but I’m getting worried. He takes chances and doesn’t see things. Yesterday, he ran a stop sign. “Don’t worry,” he told me. "We were the only ones there, weren't we?” I tried to tell him it was time to quit driving, but he won’t listen. I’d tell him I won’t ride with him anymore, but I’m afraid to let him drive without me. How can I make him quit?  - Marsha

Or even like this:

We talked about this early on, but now Hank can’t see that his driving is no longer safe. He says “Everyone makes mistakes now and then and I’m as safe as the next guy on the road…safer than most of these morons, in fact.” Yes, that’s one of the red flags I checked: He’s always getting mad at the “other guy” when he drives. -  Beverly

John and Janice did their homework early on and continued to address it regularly as a symptom of his disorder, not unlike poor balance. This made it possible for John to make “an adult” decision to quit driving when it became an issue. Don and Marsha didn’t talk about his driving until his dementia was so far advanced that he couldn’t see cause and effect…he only saw his need to continue driving, to continue to “be a man.” Hank and Beverly did their homework, but Hank avoided his problems by blaming them on others…a common ploy when dementia takes over and we don’t like to admit we aren’t as able as we used to be.

What are some of the ways a care partner can help the PlwD to make that crucial decision to stop driving?

Avoid reasoning, explaining or anger. It’s probably too late for these to work and they will simply make things worse. You are now dealing with someone who sees only the immediate positives and none of the possible negatives.

Mention grandchildren. “The grandkids are scared to ride with you” might do the job, when you saying you are scared doesn’t.

Make someone else the bad guy. Talk to the doctor and ask them to tell the PlwD that it is time to stop driving. Often this is all it takes. Of course, the PlwD may forget, and so you must act quickly to remove temptations.

Remove temptation. Hide the keys—or “lose” them, let the driver’s license lapse, and even disable the car if necessary. If you have more than one vehicle, get rid of the extra one. “We need the money,” or “grandson wants wheels” often work for explaining this.

Use physical disabilities: As we age, other physical disabilities, such as poor mobility, poor eyesight or poor hearing can play a part in one’s ability to drive. These are often more easily accepted by the PlwD as reasons for stopping driving than mental issues. Get a doctor’s support to identify these problems as physical hazards that make the PlwD’s driving unsafe.

Develop a “love of driving.” Make it a point to get into the driver’s seat first. Sometimes, this unspoken taking over of the driving task is easier for the PlwD to tolerate than discussing it.

When a PlwD vents about not being able to drive, avoid expressing your own relief or how their driving was unsafe—this makes you the bad guy again. Instead speak to their feelings and commiserate about how awful it is to lose one's driving privileges. This feels supportive and helps them to accept what is.

Finally, find as many alternatives to driving as possible. Of course, the most common one is that the care partner takes over the driving. But there are other options as well. Care facilities often provide transportation for adult day care. Most communities have handicap busses that can be scheduled for doctor’s visits and other events. Some volunteer organizations offer driving services for people who can’t drive. Talk to the local senior center staff. They will likely know who to contact.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here foreducational purposes only. It should never be used instead of a physician's advice.