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

Friday, December 29, 2017

Happy Holidays

This week, my family is enjoying visits from distance relatives, holiday get-togethers and fun, to include our very first hot air balloon ride. We hope you are also enjoying this holiday season. 

Next week will start what will probably be a series on sleep and how it affects a person living with dementia...and their care partner.

For more 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, December 22, 2017

I Want to Go Home, Part Two

Merry Christmas everyone!

A month ago, the blog was about the PlwD* who wanted to go home and suggested that the care partner would get further if they first saw the issue from the PlwD's point of view: That "home" equaled comfort and discomfort equaled "not home." If you haven't read that already, I'd suggest that you do it now. Just click here.

When you try to convince your loved one that they are indeed home, this feels to them like they are being lied to which generates more negative feelings, over and above the ones of discomfort that initated the feeling of not being home in the first place. That is a very short synopsis of that blog, but if you haven't read it, you would do well to do so before you read further here.

The first step is to validate the PlwD's feelings:
  • Unless you validate PlwD's negative feelings, you will not be able to redirect them to something more positive.
Try it. Imagine you are the PlwD and someone tells you that you are wrong. "But I know," you say. "I know that this isn't my home." If that person still insists on their way, what happens to your negative feelings? Did they increase? Now imagine that the person said something like, "OK, but I need to do something first." or "Tell me about home" or speaks to your feelings by saying something like "That must feel scary?" Can you feel the release? Can you feel the relief that being heard, being understood brings?
  • The PlwD have a short attention span. Once the negative feelings are deflected, they can be redirected.
Try it: First imagine that you are experiencing the above negative feelings. Can you feel the resistance to a distraction, like the offer of a cookie? That's normal. The job of negative feelings is to keep a person on tract until the need is met. Next, re-imagine the release you felt when you were validated. Now how about that cookie? Notice how much more receptive you feel. With fewer negative feelings, you can respond to the positive feelings engendered by the idea of a yummy cookie.

And so the bottom line is:
  •  Speak to the underlying feelings instead of arguing, explaining or reasoning.
Once the negative feelings have been validated their job is done and they will leave.
  • The PlwD lives in a black and white, either/or world. Either they are angry or they aren't. Either they are happy or they aren't. Therefore, once the angry feelings are validated, the PlwD is open to distraction almost immediately.
Then you can deflect the PlwD's train of thought with something they enjoy and it will usually work. By the time they've had their treat, they will likely be even more relaxed and will have forgotten their prior anxiety.

Another method:

If the PlwD is mobile enough for causal car trips, agree to take them home, but stop "on the way" for a treat. As above, when the PlwD feels heard, their negative feelings decrease enough to be replaced by the positive ones from the ride and the treat and the changed environment. Since they can't think of more than one thing at a time, they "forget" their concern about their home. By the time they return, they will usually "see" it as their home, especially if you make sure there are plenty of positive feelings accompanying the return...smiles, hugs, and such--remember "comfort" means "home."

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, LBD, DLB, MCI, PD, PDD, etc: person/people living with dementia
(Substitute your loved ones name here!)
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, December 15, 2017

EASEE Holiday Hints

Holidays can be meaningful, enriching times for both the person living with dementia (PlwD) and the whole family. Maintaining family rituals and traditions helps all family members feel a sense of belonging and family identity. However, some of these can be difficult for anyone with sight or sound sensitivities. Some can be confusing for a person who needs continuity and sameness to feel safe. And some can even be frightening for the person who feels lost in all the temporary changes.

As for care partners, your already heavy load may get heavier when you add holiday chores like sending out cards and hosting family visitors. How do you balance it all? How can you keep the feeling of tradition and family but save your own sanity and protect the PlwD as well?

Here are some hints for helping you celebrate the holidays that are important to you and include the PlwD as much as possible, using EASEE (encourage, simplify, adapt, explain and enjoy).

Visitors:

Encourage: Encourage friends and family to visit even if it’s difficult. Being social is an important part of dementia care, for both the PlwD and for you.

Adapt: You may not be able to do things you've always done the way you've always done them. Choose alternatives, such as asking family to stay elsewhere while they visit, or dinner out instead of a big family meal at home.

Simplify: Set limits so that you aren't overworked and the PlwD isn't overwhelmed. Limit the number of visitors at any one time, or have a few people visit quietly with the PlwD in a separate room.

Explain: Be clear about what your limits are, what you can and can't do, and what works best with the PlwD. This is especially important with visitors who haven't seen the PlwD for a while, or have only seen the PlwD during a LBD Showtime, where they appeared much more able than they usually are.

Enjoy: Give yourself time and permission to relax and enjoy your visitors. Remember the less stress you have the less stress the PlwD will feel. Make sure the PlwD has a quiet space to escape to when they get overstimulated.

Preparations:

Encourage: Encourage the PlwD to participate in the preparations, which will foster valuable feelings of usefulness and togetherness. Even when they can't help, observing will familiarize them with the upcoming festivities.

Adapt: Change your usual preparations to be less work intensive. For example, instead of decorating a tree, hang a knitted or macraméd tree on the wall or  scatter a few decorations on tables and shelves.

Simplify: Limit what you do. Not only will your workload be less, but the PlwD will be able to participate more. How much cooking do you really need to do? Which tasks, such as sending cards can be limited or deleted?

Explain: When it isn't possible for your PlwD to participate in the preparation, just observing as you talk about what you are doing and what it means to you will help to familiarize them with the upcoming festivities. To help the PlwD recognize an expected guest, begin showing a photo of a guest week before arrival. Each day, explain who the visitor is while showing the photo. To help a visitor know what to expect from the PlwD, arrange a phone call between the visitor and the PlwD. This is also another opportunity for the PlwD to become familiar with the visitor.

Enjoy: Focus on the joy of the season and take time to truly enjoy it. Help your PlwD to feel the fun of anticipation, the togetherness with friends and family, and to reminisce about past times. Include quiet distractions such as a family photo album for times when the PlwD feels upset, anxious or just needs a break.

Activities

Encourage: Encourage yourself! If you are invited to celebrations that the PlwD cannot attend, go yourself. Ask a friend or family member to spend time with the person while you’re out.

Adapt: Chose activities for the PlwD where there is less likelihood of loud conversations or other loud noises. Adjust your lighting so that it isn't too bright or too dark. Replace rich foods with healthier ones and limit alcohol.

Simplify: Limit the number of activities, choose those with smaller groups and avoid crowds.

Explain: When in a group of people who have not been around your PlwD at all or later, you may need to explain about the disease what they might expect, such as the PlwD being unable to know what is expected or acceptable. Warn people that the disease may have taken away the PlwD's ability to know them but that the PlwD can enjoy their company anyway. Unwarned, it can be quite painful to discover that a once loving relative doesn't recognize you.

Enjoy: To help the PlwD the enjoy holidays and holiday visitors, keep the PlwD's routine as close to normal as possible and make sure they get plenty of rest. To help you enjoy the time, keep your own stress down with plenty of sleep and self care.

For more 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, December 8, 2017

Essential Oils Most Helpful with Dementia

This week's guest blogger is our Alternative Therapies consultant, Regina Hucks. Her last blog was about the benefits of Touch and Massage therapies for both caregiver and patient. This blog is about the Essential Oils (EOs) most helpful for persons living with dementia (PlwD). It is a condensation of the entry on her own Alternative Therapies for Dementia Care blog. Do check it out the get the whole story and much more.

As a caregiver, YOU can change the way you respond to stress but dementia takes this ability away from PlwD. However, by incorporating Aromatherapy and Touch Therapy into their daily routine you can help them to achieve those changes. First, some suggestions:
  • Not all EOs are alike. To get the best results, I recommend using those that are marked "Certified Pure Therapeutic Grade."
  • EOs are strong. Prevent possible skin irritation or desensitizing.by blending them with Fractionated Coconut Oil (4-5 drops to 1 drop EO) when used topically. 
  • You can apply a small amount of the same EO you use for Touch Therapy massage to the back of the neck where the brain stem is, to increase effect.
Why essential oils work:

Essential oils contant sesquiterpenes, chemical compounds that enable oil molecules to cross the blood brain barrier (BBB). The BBB is the filtering mechanism between the circulating blood and the brain. Its job is to prevent damaging substances from reaching brain tissue and cerebrospinal fluid. The ability to cross this barrier is essential for the treatment of brain diseases and disorders, yet, up to 98% of small molecule pharmaceuticals cannot do so. (Pardridge; 2009). In contrast, Essential Oils with a high level of sesquiterpenes can pass through the BBB, where they can impact the brain directly by therapeutically interacting with glycine, dopamine and serotonin neurotransmitter receptors. (Wang et al., 2012; Okugawa et al., 2000)

Even those EOs that don't cross the BBB can still affect the brain through activation of the olfactory bulb. Odors and emotions are both processed in the brain's limbic system. The oils below are listed because of their beneficial impact and/or their ability to cross the BBB. However, each person will differ in their response so it is important to do a bit of research to see which ones impact your PlwD in the most positive of ways.

Best applications for essential oils:

Topical application via hand massage, (or Touch Therapy as discussed in my last article) is highly effective for both care giver and PlwD. Although massage alone is relaxing for both of you, massage with specific EOs is even more helpful. A 1998 study in Australia found that when patients in a dementia day-care facility received a 10 to 15 min hand-massage with a mix of essential oils, the patients had significantly improved feelings of well-being, alertness and sleeping patterns and significantly decreased aggression and anxiety. (Kilstoff and Chenoweth, 1998).

Aromatherapy is best performed with a misting diffuser, which breaks up the oil is into minuscule drops that are misted into the air. There are a multitude of diffusers on the market with each having its own bells or whistles. My recommendation is the GreenAir©SpaVapor. (Go to Regina's  blog to read why she prefers this type and to find out how to buy them.)

RECOMMENDED OILS FOR TOPICAL APPLICATION and AROMATHERAPY:

Often recommended for use by PlwD and related disorders. These high intensity oils have helpful enhancement and equalizing properties as well as other health benefits although they are not in high in sesquiterpenes:
  • Sandalwood: Helps to calm, harmonizes and balances the emotions, enhances brain function, and improves memory. (Blends well with Frankincense, Lemon, Myrrh and Ylang Ylang.)
  • Frankincense: Helps focus and improve concentration while minimizing distractions. It eases impatience, irritability and restlessness and can enhance spiritual awareness and thought. (Blends well with Clary Sage, Lemon, Sandalwood, Peppermint; can blend with any oil as an enhancer.)
Oils highest in sesquiterpenes:
  • Ginger: Improves digestion, acts as a soothing agent and reduces anxiety, helps to increase energy and appetite. (Blends well with Lemon, Rosemary and Frankincense)
  • Myrrh: Very soothing to the body. Works directly on the immune and nervous systems as an anti-inflammatory. May help to improve waning appetites. (Blends well with Frankincense, Lavender and Sandalwood)
  • Vetiver: May help to decrease depression, insomnia, extreme nervousness and stress. (Blends well with Clary Sage, Lavender, Sandalwood and Ylang Ylang)
  • Ylang Ylang: Aids in balancing the equilibrium. Helps to slow rapid breathing, alleviate frustration, balance heart function, reduce infection and eliminate shock. Has been used for centuries to reduce fatigue by stimulating the adrenal glands. Can have a calming and relaxing effect and alleviate anger. (Blends well with Lemon, Sandalwood and Vetiver)
Other oils recommended for use by PlwD:
  • Coriander: A gentle stimulant for those with low physical energy. Can also decrease stress, irritability and nervousness, provide a calming effect to those suffering from shock or fear. Regular use may slow memory impairment. Use sparingly; can be stupefying if over done. (Blends well with Cinnamon, Clary Sage, Ginger, Sandalwood and Frankincense)
  • Rosemary: Calms and relaxes. Found in multiple dementia studies to enhance the quality of memory. Combining Rosemary and Lavender in a diffuser has been shown to relax, calm, improving memory and provide extended periods of cognition. Combining Rosemary and Peppermint in a diffuser provides a more energetic and stimulating effect while improving memory and recall. (Blends well with, Peppermint, Lavender, and Frankincense)
  • Lemon: Invigorating, with strong anti-stress, anxiety and depressant properties. May help to improve memory and concentration. Recommendation: Drink 5 drops in a glass of water several times a day. A refreshing drink that aids digestion, decreases dehydration, limits fluid retention, strengthens the immune system and promote energy. (Blends well with Frankincense, Peppermint, Sandalwood and Ylang Ylang)
  • Clary Sage: Widely used to alleviate depression, insomnia, fatigue, mood swings and the muscle fatigue of Parkinson's. (Blends well with Lemon, Sandalwood and Frankincense.)
  • Lavender: calming, anti-depressant properties and is used for restful sleep. When in doubt, use Lavender. Recent studies have shown that combining Rosemary and Lavender in a diffuser will relax and calm while improving memory and provides extended periods of cognition. (Blends well with Clary Sage and Lemon.)
  • Peppermint: Known for centuries. Wide variety of uses: Improving alertness, reducing fevers, nausea and other digestive issues, muscle aches and headaches. A purifier and stimulant, it is used to improve memory and mental performance, and to decrease anger, depression, fatigue, and hysteria. (Blends well with, Rosemary, Lemon and Frankincense) CAUTION: Use sparingly when dealing with hypertension / high blood pressure. In this case, diffusing is best.

Coming up next month: Meditation: Slowing the Progression of Dementia

I wish you all a most Happy Holiday Season filled with love, joy, hope and peace.
To reach me with your questions, feedback or to find out how to purchase these oils at wholesale pricing, please click here and fill in the form.
For more in depth information about Essential Oils and the health benefits, please click here.
Regina Hucks, Alternative Therapy Consultant

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, November 24, 2017

Happy Thanksgiving

Yesterday was Thanksgiving. We spent the day with family and friends and we hope you did too.

We hope your holiday was happy.

  • That you had a few family or friends with you, but only a few so that your loved one could enjoy the time too. 
  • That you had a convivial holiday meal that included everyone's favorites--even if they were a bit odd! 
  • That you made a point of listing the many things you had to be grateful for. 
  • That you let go of the need to be the perfect caregiver and allowed yourself time and space to enjoy the day--even if that meant hiding off somewhere and reading a trashy novel for an hour.
  • That you took time to reminisce, to tell stories of past adventures and joys and to encourage your loved one to share their stories. 
  • That you got to share lots of hugs, and affectionate words and other expressions love and care.

And if you didn't have this, we hope you will make an effort to do so soon. It doesn't have to happen on any certain day, you know. You can make your own Thanksgiving Day on any day of the year.

Next week, the blog will be the blog I actually promised you this week: I Want to Go Home, Part 2.

For more 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, November 17, 2017

I Want to Go Home, Part One

Almost ever care partner has heard this request. Most start out by telling the PlwD,*  "But you are home" only to find out that instead of making things better it made them worse. The same is true for the care partner who tries to explain to a PlwD in a care facility that this is now their home.
Look at it from the PlwD's view:

Something isn't right. I don't really know what's wrong but I do know that when I'm home I feel comfortable and safe. Since I don't feel comfortable and safe right now, I must not be home.

"But you are home. We've lived here for 20 years!" your care partner says.

That can't be. What is she trying to tell me something that clearly isn't so. This isn't my safe, comfortable home.

"Look around," she tells you. "See this is your very own chair, and that's the carpet we bought a few years ago and..."

I have to say she's gone to a lot of trouble to fool me. The chair and the dresser do look like mine, but I KNOW this isn't home. I wouldn't feel the way I do in my own home. She can't fool me. I'm so mad.

Does this sound like some of your interactions, but from a different point of view? Here are some basics to remember and some suggestions for putting yourself in your loved one's frame of mind. To get the most out of this, rely on what your senses and emotions first tell you. Don't think about it. PlwD don't--they can't.
  • Emotions trump reality. What the PlwD feels is more important that where they really are. "Home" means comfort, thus discomfort means "not home."
Try it: Think about how you feel about "home." Is this the place where you feel most comfortable, most safe? Is it where you want to go when you don't feel well?
  • First impressions are all there is. The PlwD doesn't do the abstract thinking that change requires. The PlwD bases their impressions on the first feelings they experience after they perceive something and that's what they are stuck with. Their brain can't change.
Try it: What are your first impressions, your first feelings? Imagine that someone tells you something that you know isn't true. Say, that the blue car you are looking right at is really red? React at face value. Don't add or subtract anything--that takes abstract thinking. So now, go back and look for your first feelings. Incredulity ? Affront? Disbelief?
  • The PlwD bases further feelings on their initial response. That is, once the PlwD decided that this isn't home, they will respond just like you did about the car---and with negative feelings about being lied to.
Try it: Imagine that someone that you depend on seriously tells you that this isn't your home. Would you feel lied to? Hurt? Belittled? Angry? Scared?
  • The PlwD responds to negative feelings with negative behaviors. They will do the first thing they feel like doing without considering the effect or consequences.
Try it. What is your first impulse upon feeling lied to? What is the very first action you consider? Do you want to strike out, resist, argue, withdraw, hide, cry? You can choose not to do these things but the PlwD can't. If they feel it they will act it out.

All is not hopeless. With this inside view of the PlwD's cognitions, a care partner can choose words and actions that will help a PlwD feel more at home. Next blog will be about "going home."

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, LBD, DLB, MCI, PD, PDD, etc: person/people living with dementia
        (Substitute your loved ones name here!)
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, November 10, 2017

Affirmations to Keep You Going

Today's blog is about mantras, or motivating statements, like the “I think I can, I think I can” that you can chant over and over to yourself when the going gets rough. It can express a basic belief, be a guide for behavior, or be a personal affirmation. You can make a mantra an affirmation and make it your own by using "I:"I am open to receive..."  or "I choose...". When you leave off the pronoun, it is more of a command...and sometimes, that may be what you need! Just don't use "You" which puts distance between your mantra and you and makes it less helpful.

The following affirmations were adapted from a list of mantras collected by the LBD Caring Spouses online support group by Rosemary Dawson. All mantras are helpful but I believe that they are most effective as personal affirmations. Not every affirmation will have meaning for every care partner. Some will have meaning at one point on the Lewy journey with different ones resonating at other points. Which can you relate to now? Which ones do you use? Which ones will you choose to use today?
  1. I am open to receive the gift of the day.
  2. I choose the lesser stressor.
  3. I don't look back. I don't look forward. I focus on today.
  4. I don't worry about tomorrow; today is what matters.
  5. I don't take the bait.
  6. I drop the rope.
  7. I find joy each day with (your loved one's name).
  8. I find not just issues, but blessings.
  9. I go along to get along.
  10. Home, Hospice, Heaven!
  11. I am doing the best I can.
  12. I don't like the music, but I am still going to dance.
  13. I forgive (your loved one's name).
  14. I forgive myself.
  15. I love you.
  16. It's Lewy, not (your loved one's name).
  17. I keep in touch (by touching) .
  18. I kiss slowly, forgive quickly, play hard, take chances, give everything, and have no regrets.
  19. I laugh when I can, apologize when I should, and let go of what I can't change.
  20. I let go, let God.
  21. Life is too short to be anything but happy!
  22. I look for treasures in the darkness.
  23. One day (hour/minute) at a time.
  24. Outsmart Lewy.
  25. I pick my battles!
  26. Sooner rather than later.
  27. Start low, go slow!
  28. I stay calm and avoid the ER.
  29. Thank you for ....(e.g., being you, loving me, sharing my life, helping me with......)
  30. This is doable. This too will pass ...
  31. This was the best day of our life!
  32. To dream the impossible dream.
  33. Toujour Ensemble.... Always together.
  34. When it rains, I look for rainbows. When it's dark, I look for stars.
  35. I can't control the waves, but I can learn how to surf.
  36. (Your loved one's name) is doing the b•est s/he can.
If you are interested in joining an online LBD caregiver support group:

The Caring Spouses is a private online group limited to spouses of people living with LBD. If you are a LBD spouse, you can CLICK HERE to request to subscribe.

The Yahool LBD Caregiver's Support Group is open to LBD caregivers and anyone interested in LBD caregiving. To subscribe, CLICK HERE, then enter "LBD Caregivers" in the search box.

The Lewy Body Dementia Support Group on Facebook is a closed group, but easy for anyone interested in LBD to join. Enter "Lewy Body Dementia Support in the Facebook search box.

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, November 3, 2017

Touch and Massage Therapy Incorporating Essential Oils:

Today's blog is from our Regina Hucks, our Alternative Therapies Consultant.

Touch is powerful.
The Human Touch is a powerful thing. Often a touch can be something as simple as placing a comforting hand on a shoulder or another’s hand or a more powerful touch found in a hug or gentle embrace. For someone with dementia, this is huge.

The number 1 question I get from caregivers is “What can I do to dispel agitation and anxiety.” While everyone responds differently, you may need to try several things before finding that particular therapy that works best for your charge. There are several basic things I will suggest doing that may well be your key to preventing episodes from occurring but it is important to try first to discover the source of his or her trigger. Consider this exercise much like child-proofing a home.

Anxiety and agitation may be caused by a number of different medical conditions, medication interactions or by any circumstances that worsen the person's ability to think. Ultimately, the person with dementia is biologically experiencing a profound loss of their ability to negotiate new information and stimulus. It is a direct result of the disease.

Situations that may lead to agitation include:
  • Moving to a new residence or nursing home
  • Changes in environment, such as travel, hospitalization or the presence of houseguests
  • Changes in caregiver arrangements
  • Mis-perceived threats
  • Fear and fatigue resulting from trying to make sense out of a confusing world
There are 5 basic things you will want to do to prevent or reduce agitation:
  1. Create a calm environment. Remove stressors. This may involve moving the person to a safer or quieter place, or offering a security object, rest or privacy. Try soothing rituals and limiting caffeine use.
  2. Avoid environmental triggers. Noise, glare and background distraction (such as having the television on) can act as triggers.
  3. Monitor personal comfort. Check for pain, hunger, thirst, constipation, full bladder, fatigue, infections and skin irritation. Make sure the room is at a comfortable temperature. Be sensitive to fears, misperceived threats and frustration with expressing what is wanted.
  4. Simplify tasks and routines.
  5. Provide an opportunity for exercise. Go for a walk. Garden together. Put on music and dance or paint or draw.
NOTED SUGGESTION: I know this is off the subject of Touch and Massage therapy but creating the calming environment is first and foremost. Research has shown that a combination of Rosemary and Lavender Essential Oils in a diffuser reduces or eliminates anxiety. Rosemary has been shown to increase cognition while Lavender acts as a calming and soothing agent. Regular daily diffusing helps to create and maintain a calming environment.

Once you have done all you can to ensure the creation of a calming environment and you are confident there isn’t any medical issue needing your attention yet anxiousness or agitation still persists, Touch Therapy and the use of specific Essential Oils will generally provide immediate relief.

Touch Therapy is our primary focus in this blog today. Touch Therapy is easily learned and incorporated into a daily routine while Massage Therapy should only be performed by a licensed practitioner with knowledge and experience working with dementia’s and the aged. Above all else, Touch Therapy and Massage Therapy present SIDE-EFFECT-FREE alternatives to everyone.  More.... 

 (Find the rest of Regina's information on Touch Therapy in her blog, Alternative Therapies for Dementia. To contact her visit this page and fill in the form.)

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, nor is Regina Hucks. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Tuesday, October 31, 2017

Lewy Body Phrase for 10-31: Our Upcoming Book

What better day than Halloween to talk about a book that helps care partners deal with the frightening and bewildering behavioral and psychological symptoms of dementia (BPSD) that start showing up far too early with LBD but eventually show up with most dementias?

We plan to have our upcoming book published in time you to use it as a Christmas gift. If you've been following daily October blogs, you already know what it is about. Each of these blogs is a tiny sample of the information in the book.

Of course, since these blogs were kept very short, they contained only a few of the items covered in the book under each subject and seldom included the many quotes that make the book so much more personal.

We plan to offer versions of the book: one for care partners and one for care staff. You can get one for yourself and one as a gift for your helper. We will list it on LBDtools.com and on Amazon so watch for a notice!

For information about Lewy body disorders, read our present 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.

Monday, October 30, 2017

Lewy Body Phrase for 10-30: Sense-based Therapies

These non-drug options for management of the behavioral and psychological symptoms of dementia (BPSD) all use the sense pathways to the brain, which lasts longer than language or reason.

Aromatherapy uses diffuses healing oils into the air to calm, fight infection, or energize. It is easy to use and can be effective even with people who have lost their sense of smell.

Non-custodial touch (vs. that used in physical care) can decrease anxiety, agitation, physical pain and stress while improving comfort, relaxation and reassurance.

Massage therapy soothes and relaxes. Simple massage can be learned quickly by care partners and provide wonderful together time.

Acupressure uses finger pressure to calm, improve sleep and speech and relieve pain. While less effective than acupuncture, it can be easily learned and used by care partners.

Sound therapy uses sound vibrations, music and rhythm to enhance mood, relaxation and cognition.

Visual stimulation uses light, color, shape and motion to stimulate and relax.

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.


Sunday, October 29, 2017

Lewy Body Phrase for 10-29: Relaxation Exercises

Relaxing the body relaxes the mind, lowers stress and decreases behavioral and psychological symptoms of dementia (BPSD).

Relaxation sessions can:
  • last a few minutes, as with deep breathing, or longer, as with yoga.
  • be easy, as with listening to music or following the directions of someone in a soothing monotone
  • be more involved as with yoga or meditation.
  • be as helpful for the care partner as the person living with dementia (PlwD).
  • have calming and clarifying results that last for hours afterward.
Deep breathing is the simplest of these but quite effective and can be done almost anywhere. It is also contagious. When a care partner deep breathes, a  (PlwD) will follow suit and relax too.

Find a relaxation exercise that the PlwD likes and start it early in the disease. If started too late, the more complicated ones may be too frustrating to learn.

For more 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, October 28, 2017

Lewy Body Phrase for 10-28: Enhancing Activities

Enhancing activities like mental stimulation, sociability and music enhance self-esteem, enjoyment and quality of life, thus decreasing behavioral and psychological symptoms of dementia.

Mental stimulation improves and maintains brain function.
  • Adapt to lower skill levels with easier books, puzzles or games, but don't quit.
Socialization fosters positive emotions, cognitive function, well-being and better quality of life.
  • Invite friends or family members (1-2 a time) to visit in the person's home.
  • Encourage continued participation in beloved sports, games and hobbies, simplified for more socialization and less challenge.
  • Encourage continued participation in social and religious organizations. Choose smaller groups when possible.
Music and rhythm provide a different pathway to the brain. It can be calming or energizing, and can increase cognition for hours after a session.
  • Make a playlist of the person's favorite songs that they can listen to with earphones.
  • Use rhythm to facilitate movement.
These are only three of a long list of enhancing activities....
    For more information about Lewy body disorders, read our books:
    A Caregivers’ Guide to Lewy Body Dementia
    Managing Cognitive Issues in Parkinson's and Lewy Body Dement

    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, October 27, 2017

    Lewy Body Phrase for 10-27: Healthy Living Practices

    Healthy living practices decrease behavioral and psychological symptoms of dementia (BPSD) by providing the brain more reserves for dealing with them:
    • Exercise: "Better dementia therapy than any drug." Lack: muscle pain, depression, slower thinking and confusion.
    • Socialization stimulates mental function and improves self-worth. Lack: isolation, depression, confusion, and more.
    • Fluids hydrate the body, transport nutrients, prevent constipation and regulate temperature. Lack: BPSD, confusion muscle cramps and more.
    • Sleep is when the body restores and strengthens its resources. Lack: BPSD, confusion, pain sensitivity, weakened immune system.
    • Proper diet and nutrition support a healthy body in general which frees up resources for dealing with dementia symptoms. Lack: malnutrition, overweight, susceptibility to illnesses, more dementia symptoms.
    For more 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.

    Thursday, October 26, 2017

    Lewy Body Phrase for 10-26: Preventative Therapies

    We can sometimes prevent behaviors and psychological symptoms of dementia (BPSD) by:

    Controling the environment:
    • Avoid clutter, crowds, loud noises and bright lights and extremes.
    • Use routines, rituals, transitional cues and familiarity.
    Preventing infections:
    • Monitor for symptoms and treat early
    • Use healthy living practices
    • Avoid pressure sores
    Manage pain:
    • Monitor for non-verbal cues suggesting pain
    • Treat early, first with non-drug options
    • When using drugs, choose the mildest possible
    • Consider medical marijuana
    Tomorrow's phrase: Healthy living practices

    For more 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.

    Wednesday, October 25, 2017

    LBD Phrase for 10-25: Rehab Therapies

    Rehabilitation therapies are the most common non-drug options recommended by physicians to help deal with the stresses that lead to behavioral and psychological symptoms of dementia (BPSD).

    • Physical therapy: Can improve self-image, increase independence and manage pain.
    • Occupational therapy: Can increase independence and maintain self-worth.
    • Speech therapy: Improves communication ability.
    • Psychological counseling: Helps person and care partner deal with stressful disease related changes, family issues and grief.

    Tomorrow's phrase: Prevention

    For more 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.

    Tuesday, October 24, 2017

    Lewy Body Phrase for 10-24: Improv Acting

    Care partners sometimes see playing along with a person's delusions as dishonest. Improvisational theater (improv acting) is a non-drug option for behavior management that allows a care partner to see them selves as actors playing a part rather than feeling dishonest.

    Guidelines:
    • Listen carefully.
    • Accept the person's reality and agree in action if not in words.
    • Focus on the emotion and respond to that rather than the words.
    • Stay in the here and now.
    • Contribute by offering words that fit the person's reality. (This may mean an apology if that is what they need!)
    • Once you are working together, move the action forward towards a needed goal.
    Read more about improv in our 6/10/16 and 6/19/16 blogs.

    For more 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.

    Monday, October 23, 2017

    Lewy Body Phrase for 10-23: Empathetic Communication


    Empathetic communication is a non-drug option for behavior management based on the fact that to a person without abstract thinking, their delusions are true and their hallucinations are real.
    1. Accept that your reality is as false to them as theirs is to you.
    2. Accept that their beliefs are unchangeable.
    3. Accept that explaining, defending or arguing is futile.
    4. Use empathy to consider how you'd feel if you were them.
    5. Respond in the way you'd want to be responded to.
      • Agree, at least by action if not in words, (nod).
      • With delusional accusations: Apologize and move on.
      • With hallucinations: Check for safety and go with the flow.
    For more 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, October 22, 2017

    Lewy Body Phrase for 10-22: Care Partner Care

    A person living with dementia (PlwD) who has a healthy, rested, happy care partner will have fewer behavioral and psychological symptoms of dementia (BPSD) than one whose care partner is sick, overburdened, tired, or irritable.

    A PlwD mirrors care partner stress as a negative emotion of their own and, without impulse control, acts it out.

    Martha is tired, her back hurts and she's worried about the car that needs repairs. Dave picks up on Martha's stress, identifies it as his own residual fear that his life is disappearing, and begins to shadow her everywhere she goes.

    Short term solution: Martha needs to take a few hours of respite so that her stress level will decrease. With less stress of her own, Dave will also be less stressed, he won't feel so fearful and his shadowing will decrease.

    Log term solution: Martha may need to hire or ask for help so that she can get the rest she needs, see a doctor about her back, join a caregiver support group and/or talk to a financial guide about budgets. See our many blogs about caregiver care or read about it in our books.

    For more 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, October 21, 2017

    Lewy Body Word for 10-21: Hallucinations

    Hallucinations: seeing, hearing or feeling something that isn't really there.

    With LBD: Well formed visual hallucinations often appear before thinking abilities fade.
    With Parkinson's: Similar hallucinations appear well after motor symptoms but while thinking is still intact.
    • At first, the person believes the care partner's explanation that the hallucinations are simple Lewy playing tricks again. Earl said, "I know the little army men aren't real but they are fascinating."
    • As abstract thinking fades, Earl will begin to believe his little men are real. As with delusions, this belief cannot be changed.
    With other dementias: Hallucinations can occur, usually after thinking abilities fade.

    Delusions: Once thinking fades, hallucinations are often combined with delusions into elaborate dramas that the person truly believes.

    Best reaction: Empathetic communication (tomorrow's blog)

    For more 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, October 20, 2017

    Lewy Body Word for 10-20: Delusions

    Delusions: Dramas brought about by faulty thinking often combined with residual emotions. Delusions show up early with LBD because thinking fades earlier too.

    Dave see his wife on the phone:
    • This triggers his residual fear of abandonment. 
    • To make sense of this fear, his dementia-damaged-brain offers the delusion that that she is talking to her lover. 
    • Now, also angry, he accuses her.
    • When she tries to explain, he becomes even angrier.
    Considering the validity of a thought requires abstract thinking. Without it, the delusion becomes Dave's truth. Consider how you would feel if someone tried to tell you that something was not the way you knew at the very core of your being that it was. This is how strong delusions are. Explaining, defending or arguing DO NOT work.

    For more 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.

    Thursday, October 19, 2017

    Lewy Body Phrase for 10-19: Non-Drug Options

    Non-drug options should be tried first before behavior management drugs. They:
    • Are generally safer than behavior management drugs and often equally efficient.
    • Often take more care partner time and effort to use than popping a pill.
    • Can provide opportunities for care partner and loved one togetherness.
    • Can be used alone or in combination with behavior management drugs, which often results in the need for fewer drugs.
    Non-drug options includes the following and much, much more:
    • care partner care
    • occupational therapy
    • infection control
    • relaxation methods
    • music and rhythm therapy
    • aromatherapy and massage
    Tomorrow: Rehabilitation therapies
      For more 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.

      Wednesday, October 18, 2017

      Lewy Body Phrase for 10-18: Drugs and Sensitivity

      No drug can cure LBD but some can treat its symptoms.
      • Dementia drugs work to improve cognition and other LBD symptoms.
      LBD can cause a person to be super-sensitive to certain drugs.
      • Which drugs are "Lewy-sensitive" for each person is very individual.
      • Lewy-sensitive drugs act as though the person had a much larger dose than normal, with often severe results.
      Behavior management drugs are often Lewy-sensitive. Use very carefully if at all.

      Drugs for other symptoms should be reviewed for Lewy-sensitivity before use. (LBDA Medications Glossary)

      All drugs should be started in the smallest dose possible, increased until they do the job or cause problems, and stopped when no longer needed.

      For more 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.

      Tuesday, October 17, 2017

      Lewy Body Word for 10-17: BPSD

      BPSD stands for behavioral and psychological symptoms of dementia. BPSD are triggered by stressful irritants that can be:
      • physical, as with an infection.
      • external, as with an overheard phone conversation.
      • perceptual, as with the person's perceived view of that their spouse is "calling their lover."
      • emotional, as with the fear the perception of the call generates.
      • a combination of these, as with:
        • frustration at being unable to explain the discomfort of an infection
        • anger at being "lied to" by the spouse whose explanation is different from the person's hard-wired belief.
      BPSD are often rational behaviors based on incorrect information derived from faulty thinking. They include but are not limited to:
      • agitation, anxiety and irritation
      • threatening, aggressive or disruptive physical or verbal behavior
      • delusions, usually of infidelity, abandonment or theft
      • depression and withdrawal
      • hallucinations
      • paranoia
      • repetitive activity
      For more 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.

      Monday, October 16, 2017

      Lewy Body Word of the Month for 10-16: Stress

      When dealing with dementia, there is lots of stress. Each person has a stress threshold, the amount of stress they can handle without calling in the reserves. Any illness, including dementia, stresses the body which lowers this threshold.

      The body gives managing stress overload high priority. When it overflows one's threshold, the body diverts resources from lower priority tasks, such as managing dementia symptoms, to deal with this overload.

      Stressors are anything that causes physical, emotional, or environmental discomfort or distress.

      You can often decrease dementia symptoms (or the symptoms of any disease) by decreasing their stressors.

      For more 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, October 15, 2017

      Lewy Body Phrase for 10-15: What's Left

      Dementia takes away a lot. Here are three functions that are left:

      The senses: Seeing, hearing and touching may be affected by other issues, but not dementia, although it can change one's perception of what the senses deliver.

      • Communication tools: Smiles and gentle touch.

      Emotions remain long after thinking has faded. When the senses deliver information about an experience, be aware that the emotion attached to that information is often one left over from a previous experience.

      • Communication tools: Hugs and loving words.

      Concrete thinking: This basic, unfiltered thinking lasts to the end. It accepts what the senses deliver and the attached emotion and does its best to make sense of the experience. The result is often a delusion, or a faulty belief.

      • Communication tools: Simple words and acceptance. (Uh, huh, acceptance...not belief, but definitely acceptance!)

      For more 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, October 14, 2017

      Lewy Body Dementia Word for 10-14: Emotions

      Emotions drive behavior.
      • Emotions remain after abstract thinking fades. A person will respond to the first emotion they experience during an event.
      • Negative emotions are motivators. They are stressful, strong and intense. Their job is to drive you away from a perceived danger or discomfort.
      • Positive emotions are comforters. They are centering, calming and relaxing. Their job is to encourage us to stay in a comfortable space.
      • The first emotion experienced is often residual, left over from an earlier event. Residual emotions are usually negative; they are stronger and last longer.
      Make care partnering easier by avoiding negative emotions and promoting positive ones.

      For more 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, October 13, 2017

      LBD Phrase for 10-13: Concrete Thinking

      Concrete thinking is
      • What a person is left with as abstract thinking fades. 
      • Based on information gathered by the senses.
      • Literal; a "hot potato" is just a very warm vegetable.
      • In the present, with no past or future, no ability to wait or to accept delayed gratification.
      • Single-minded and based on the brain's first information.
        • If the first thought about a spouse's phone conversation is "she's talking to her lover" that's the only truth.
      • Able to accept only what the person experiences personally.
        • The little men that the person sees are real and not hallucinations.
      • Hard-wired and can't be changed with explanations, defending or arguing.
      For more 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.

      Thursday, October 12, 2017

      LBD Phrase for 10-12: Abstract Thinking

      Thinking comes in two forms: we start out with concrete thinking and gradually develop abstract thinking.
      Abstract thinking is for reasoning and developing concepts. It is what a person uses when they:
      • Accept their care partner's explanation that the little men they see are hallucinations.
      • Realize that what they first thought was fire is just a flash of light.
      • Make a decision based on information from an outside source, such as a book or other person.
      • Tell time, do finances or organize a party.
      • Understand the punchline of a joke.
      As the ability to think abstractly fades, concrete thinking remains. That's tomorrow's phrase.

      For more 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.

      Wednesday, October 11, 2017

      LBD Word for 10-11: Treatable

      LBD is treatable. We've been teaching about treating LBD for over a decade! 
      • Symptoms can be addressed individually, often with good results. 
      • With good treatment, a person with LBD can have a good quality of life for many years.
      • Some drugs can help: dementia drugs, anti-depressants, and mild anti-psychotics and others for specific symptoms, but drugs can also be very problematic. 
      • Non-drug options, alone or combined with drugs in lower doses than when used alone is often the best option.
      For more 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.

      Tuesday, October 10, 2017

      LBD Phrase for 10-10: Progressive and Incurable

      Today's word is progressive and incurable.
      • Like most neurological diseases, LBD grows in the body for years before a person has diagnosible symptoms. 
      • By this time, the disease is too far along to cure or stop. It's like cancer that has become inoperable. Don't believe the claims that this miracle herb or that miracle drug has cured LBD, Parkinson's or any other neurological disease.
      • Hopefully,  researchers will have figured out something that works in the next decade or so.
      • When they do, it will likely be something that stops the disorder either before it happens, or very early on, before it has expanded too much to stop.
      Tomorrow's word is treatable. LBD isn't curable but it is treatable.
        For more 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.



        Monday, October 9, 2017

        LBD Word for 10-9: Diagnosis

        Today's word is diagnosis:
        • LBD often goes undiagnosed or is diagnosed as another disease such as Alzheimer's or Parkinson. It often shows up in combination with other dementias, making diagnosis even more difficult.
        • Like other neurological diseases, LBD must be diagnosed mainly via patient history and symptoms.
        • Diagnosis is very important because a) many of LBD symptoms are treatable and b) the wrong treatment can make it worse.
        • A person is usually seen by three to five doctors before finally being diagnosed with LBD, and is usually diagnosed with at something else first, such as depression, Alzheimer's or Parkinson's.
        • When taking anyone to a specialist for a diagnosis of any kind of dementia symptoms, make sure the specialist is Lewy-savvy to assure a more correct diagnosis.
        For more 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, October 8, 2017

        LBD Word for 10-8: Individual

        LBD is very specific to each individual, and thus hard to diagnose, especially by non-LBD savvy doctors--and there are many of those!
        • No two people will experience this disorder the same way.
        • No two people will have the same symptoms.
        • When two people have a similar symptom, they will likely express it differently, or with more or less intensity.
        However, there are enough similarities that knowledgeable (Lewy-savvy) doctors can diagnose it and differentiate it from other dementias.

        For more 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, October 7, 2017

        LBD Word for 10-7: Statistics


        • LBD affects 1.4 million Americans and likely many more who are undiagnosed.
        • LBD is the second most common progressive dementia after Alzheimer's disease (AD).
        • Like AD, LBD is caused by damaged proteins, but they are not the same ones.
        • LBD is a neurological disease caused by damaged proteins called Lewy bodies that spread in time throughout many areas of the brain.
        • Researchers believe that Lewy bodies occur due to a combination of genetics and toxins in the environment.
        • Symptoms depend on where the Lewy bodies are in the brain.
        For more information about Lewy body disorders, read our books:
        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, October 6, 2017

        October: Lewy Body Dementia Awareness Month

        For the rest of the month, I will post a LBD Word or Phrase of the day. Today's word about Lewy Body Dementia is disease.
        • LBD is so much more than just dementia. Dementia is just one if it's many symptoms.
        • It is a disease that affects many areas of the body besides the brain.
        • It is a disease that is progressive and as yet incurable.
        • It is a disease where many of the symptoms are treatable.
        • It is a disease that we don't know nearly enough about. We don't fully know how we get it or how to stop it--yet.
        • It is a disease that needs a lot more research!
        Tomorrow's word: statistics

        For more 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, September 29, 2017

        Home After a Summer of Fire

        I’m using my blog this week to talk about the weather. Although it isn’t specifically about LBD, it certainly affects our loved ones, especially those with breathing problems.

        We’ve heard so much about the awful hurricanes on the East Coast, but the West Coast has been in crisis too, with far more forest fires than usual. Although mostly only our precious wildlife and forests died,  there was still great danger. For months this summer, an ever pervasive blanket of smoke covered most of British Columbia, Washington, Oregon, Idaho and Northern California, making it difficult for many to breath and filling the hospitals with people who already had breathing problems. Next year, it is likely to be even worse.

        We actually had a lovely summer in the Pacific Northwest, visiting with family and friends and enjoying lots of unusually warm weather and very little rain. However, we were among the fortunate ones. While the East Coast dealt with hurricanes, the West Coast forests were on fire and smoke covered the west. Although we visited areas where smoke was eventually very heavy, we were long gone by then and in more secluded areas before that happened.

        However, no one in Washington or Oregon, Idaho or Northern California could avoid the smoke completely. It was everywhere. Even in our secluded area, we saw the sky turn murky and the sun become a dull orange ball.  I cried when I read about the devastating fires turning places I'd known and loved for years into blackened trees. Even now, my eyes tear up as I type.

        When the rains did finally came in September, we joined our neighbors in cheering and hoping they would be strong enough to put out the fires. In most cases, they weren't. The rains helped but many of the fires still rage, although they are all now partially contained. The word is that the larger fires won't be totally out until December!

        So much more devastation this year because of the lack of rain leaving the forests overly dry and it is not predicted to get better.

        A few numbers to consider:
        • 0.07 degrees Fahrenheit. That's the annual average temperature increase since 1880.(Yes, the world is in a normal warming cycle, but it was very gradual until lately.)
        • 0.17 degrees Fahrenheit. That's the average temperature increase between 1970 and 2017, over twice what it would be if it followed the above trend.
        • An increase in yearly wildfires for the last 12 years, compared to the annual average from 1980 to 2000.
        • 5 month  fire season in the early 1970's.
        • 7 month fire season in 2017, with twice the smoke, and more burned area.
        And people still insist we don’t think we don't have a global warming crisis?

        I suspect a person could compile similar statistics about hurricanes and earthquakes and other natural disasters. I believe that they will all increase as our planet's protective covering is burned away by excess carbon emissions.

        OK, I'll get down off my soapbox now and next week, I'll be back to talking about LBD. Thanks for allowing me to use this blog for something else that I feel strongly about.

        References:
        Environmental Protection Agency
        NOAA

        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.