The Internet: A Useful Tool

I’ve been using the internet for more than 25 years. In the early 1990’s, it was a place where I made friends via chat groups. Then friends and family began to get email addresses and I began emailing them instead of writing letters or phoning. By now, it is my telephone book, my cookbook, my research library and my encyclopedia. I tend to communicate via email instead of phone, and I visit my distant loved ones via Skype.

Many seniors aren’t as comfortable with computers or the internet. They might look recipes up in favorite cookbooks and go to the library or ask a doctor or other expert for information. Even so, most do have email mainly, they say, “to keep up with the grandkids.” Many go on Facebook for the same reason. So do I! But for caregivers especially, there is so much great information and support available on the internet, that it is worthwhile making the effort to learn a bit more about how to use these resources. Here are some of the ways the internet can help caregivers:

Support groups. Probably the most important way that the internet can help caregivers is through the growing number of support groups available online. I just can’t say enough about the value of being in a support group. Local groups, where you can talk face-to-face—and share hugs!—with others who have had similar experiences, troubles and joys are definitely wonderful. There are now over a hundred LBD support groups in the US and hopefully, one is close enough for you to be able to attend.

Then there are the virtual groups. Even if you do have a local group, you may need to vent or ask a question at 3am. That’s when these virtual groups come in handy. You get the same “we are in the same boat” feeling and the same caring responses. Most of these groups are closed, i.e., you must apply for membership and be accepted before you can see the posts or post yourself. Most are open to anyone who applies, but some have limits. I’ve only listed our favorites here:

• Facebook Lewy Body Carers Group. Of all the FB groups, this one reminds me most of a local group with very supportive caregivers, ranging from new to those who’ve been around for years.
• LBD Caregivers Yahoo Group—the first virtual LBD support group and still going strong. Jim was one of this group’s first members and he still monitors it.
• LBD Caring Spouses Yahoo Group—open only to spouses of loved ones with LBD. “We not only care for our loved ones, we care for each other as well.” Jim considers this his home group. He has been with it since it started.
• LBDA Forums, discussions on a variety of subjects--open for reading, but you must sign up to comment. These forums are one of my go-to resources for information about LBD from “the horses’s, uh, caregiver’s mouth.”

Drug Information. Because LBD is such a scary disorder where drugs are concerned, every LBD caregiver needs to be well-educated about these drugs. There are many places on the internet where you can find out about drug side effects and interactions. A warning: Use these sites in addition to asking your pharmacist, not in place of. Your pharmacist can be much more specific with you. There’s a long list of drug information resources in our Managing Cognitive Issues book, but start with the three drug lists on LBDtools.

LBD information. LBD is a baffling disorder and can appear in many forms. A well-informed caregiver can do a much better job of caregiving. You will have a better idea of what to expect and more importantly, how to deal with the symptoms—which ones to adjust to and which ones to be concerned about. You will learn ways of dealing with frustrating situations that won’t make them worse instead of better. Again, use these sources in addition to what you get from your physician, not in place of.

Documentation. Although many still use a simple spiral notebook to keep track of a loved one’s symptoms and medications, consider trying out a free site like CareZone. It allows you to a journal, a calendar, and a contact list all in one place. A computer, if not the internet, is also helpful in keeping track of your loved one’s symptoms and medications. It is also accessible by mobile devices so if you use a smart phone or ipad, you can take it with you to the doctor’s office.

You may be able add other ways the internet has been helpful to you. Please feel free to comment!

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

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

A Quick Way to Know if LBD is Likely

It is not unusual for a person to receive several diagnoses before they are finally diagnosed with Lewy body dementia (LBD), resulting in months, and sometimes, years between recognition of a problem and a diagnosis that fits. Primary doctors still may not recognize the cardinal differences between LBD and Alzheimer's. Even some neurologists aren't up to date on this disease, which Dr. James Galvin calls "the most common disease you've never heard of." Dr. Galvin has been working with LBD for a very long time. He was already a known expert on the subject when he joined Jim (Whitworth) on the LBDA board in 2008. We were honored when he offered to write the back page review of our book, A Caregiver's Guide to Lewy Body Dementia, published in 2010.

After these many years of research combined with clinical practice, Dr. Galvin has come up a very simple, but surprisingly accurate, list of ten questions that help physicians discriminate between Alzheimer's and LBD. When compared to standard tests, Galvin's diagnostic test shows the difference between Alzheimer's and LBD with a whopping 98.6% accuracy. Even imaging tests seldom do that well!

Dr. Galvin warns that a screening test, in itself, is insufficient for dementia diagnosis, but says that this test can suggest a strong possibility that LBD is present. The beauty of this test is that anyone can do it, including caregivers. While a formal diagnosis of LBD should always be done by a qualified physician, this test can provide a caregiver with information to take to the doctor and a basis for questions to ask. And hopefully, it will decrease the time before an accurate diagnosis.

The Lewy Body Dementia Diagnosis Questionnaire

Allow 1 point for each of the following that has occurred at least three times over the past six months?

1. Have slowness in initiating and maintaining movement or have frequent hesitations or pauses during movement?
2. Have rigidity (with or without cogwheeling) on passive range of motion in any of the 4 extremities?
3. Have a loss of postural stability (balance) with or without frequent falls?
4. Have a tremor at rest in any of the 4 extremities or head?
5. Have excessive daytime sleepiness and/or seem drowsy and lethargic when awake?
6. Have episodes of illogical thinking or incoherent, random thoughts?
7. Have frequent staring spells or periods of blank looks?
8. Have visual hallucinations (see things not really there)?
9. Appear to act out his/her dreams (kick, punch, thrash, shout or scream)?
10. Have orthostatic hypotension or other signs of autonomic insufficiency?

Add up your score. A total of three or more points indicates a very high likelihood of Lewy Body Dementia.

Copyright 2015 The Lewy Body Composite Risk Score, James E. Galvin

If you do this at home and take it to your doctor, consider bringing along your journal with dates and descriptions of events such as hallucinations, to support your answers.

Some of the words in this test are fairly clinical--it's for doctors after all. Here are some definitions:

• rigidity: Stiff or inflexible muscles
• cogwheeling: a tremor that accompanies rigidity, usually characterized by a "stop and go effect" during range of motion
• tremor at rest: a tremor that appears only when the extremity is not being used.
• passive range of motion: when a person's extremities are moved through range of motion exercises by another person.
• letharagic: sluggish, apathetic
• incoherent: unclear, confusing, disjointed
• orthostatic hypotension: low blood pressure on rising
• autonomic insufficiency: ineffective functioning of one's automatic functions including digestion and elimination

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 for educational purposes only. It should never be used instead of a physician's advice.

When You Have To Go To The Emergency Room

This week, Timothy Hudson is our guest blogger again. (Yes, HUDSON, not Hutton. Sorry, Timothy about the typo last week!) He is caregiver for his parents, one of which has LBD, often posts on the Facebook Lewy Body Carers site and operates a website that is worth bookmarking. See what he says about it at the end of this blog.

Last week's blog was the first part of Timothy Hutton's great suggestions for hospital emergency room (ER) visits. If you haven't read it yet, be sure to read it before you read this. This week is simply a list of all the things you need when you do have to take a loved one to the ER. As I read it, I realized that almost every item could be a blog in and of itself! But Timothy's goal was to make a thorough, but short as possible list that carers could refer to and use. I think he succeeded!

1. Accompany LO unless impossible. Travel in ambulance with LO. Arrange return-trip later (make a standing arrangement in advance, if possible)
2. Bring your hospital kit ready with baseline notes, medications, clothes, phone AND charger, pen, paper, contact list, money, etc
3. Stay with them in Emergency Room, and if they are admitted.
4. Rigourously attend to hygiene: MRSI and C-Diff, etc., are potential killers, and can frequently be avoided. Apply even greater rigour for yourself. Disinfect, wear a mask, etc.
5. Provide frequent close physical contact with your loved one to provide comfort, continuity and connection, reassure frequently, apologize and promise to do what you can to remedy (even if that is overly optimistic).
6. If Trauma: advocate for sedatives and local anesthetics. Avoid general anesthetics.
7. Pain medications: use Tylenol whenever possible rather than opiates.
8. Ask early if the situation could be managed as an out-patient: inform staff that risks and downsides increase the longer you stay.
9. Try to prevent hospital-induced delirium as much as possible. Try to recognize the difference between their dementia, a Lewy swing, and the onset of delirium.
10. Ask for a quiet place, and try to keep LO and staff calm.
11. Open or close door/drape depending on LO’s preference and reactions.
12. Ask for alert-sounds from equipment in room to be silenced or quieter. This is usually done easily, but is rarely offered.
13. Use “noise-cancelling” headphones and play something they like: they can be comfortable, will diminish the chaotic racket and be peaceful, if headphones tolerated.
14. Bring something of interest to occupy your loved one.
15. Quickly establish that they need to maintain medication schedule or a decline and difficult behaviours will likely emerge.
16. Bring 24hrs of medications, pre-made in dosettes. Even if they will not allow your medications to be used (some will), the sooner you can administer them once discharged, the better (possibly as soon as you get out the door of the hospital).
17. Advise them that persons with Lewy Bodies commonly have severe neuroleptic sensitivity. Avoid traditional anti-psychotics whenever possible.
18. Accompany LO to all tests. Both as an advocate, and to ensure Showtiming doesn’t convince the technicians that LO is fine, or can stand/walk, or is not who they believe ‘em to be
19. Request a paid-carer if you have to be away, depending on LO’s cognition. Some hospitals will have “sitters” that will be assigned without you having to pay for it (but they’ll never advise you of that, and they are frequently clueless about dealing with dementia and delirium).
20. Always insist that someone help in the bathroom to prevent falls.
21. If discharge is a potential, ask for details of what risk factors would be if you returned home.
22. Carefully make notes, and ask for things to watch for once discharged.
23. Carefully read the discharge instructions before you leave, digest the details, and ask questions while still at hospital with knowledgeable people available.
24. Get them home as soon as viable – often will recover faster there.
25. Don’t underestimate recovery times and relapse potential: almost always more difficult with LBD.

Thank you, Timothy, for sharing this. You will be able to find Timothy's complete article on the LBD Care Partner's page within a few weeks. (We are revamping the website to meet Googles mobile requirements or it would be sooner...)

Timothy Hudson operates LewyBodyDementia.ca -- a Canadian website providing tips and techniques to make life better for LBD carers and those they care for. Information is prioritized to provide the biggest benefit, and as early as possible in the process.

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. (Nor is Timothy Hudson.) As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Before You Go To The Hospital Emergency Room

Our guest writer this week and next is Timothy Hutton, who is caregiver for his parents, one of which has LBD, often posts on the Facebook Lewy Body Carers site and operates a website that is worth bookmarking. See what he says about his website at the end of this blog. This week Timothy identifies what you need to do before deciding to take a loved one to the ER. Next week the second half of his article will discuss actually going to the ER.

LBD has extremely wide, gut-wrenching fluctuations – it is difficult to know if some things are a Lewy spike, or a potential coffin spike. How can you know?

Making the decision to go to a hospital emergency room (ER) is difficult, and frequently results from a worrisome change or crisis. Often, it is highly influenced by emotions. Using a baseline journal will help make a more objective decision, and will help with decisions when you are at the hospital.

Before a Crisis Hits: Consider, Plan and Discuss.

Consider the bigger picture. Think about the options and weigh the benefits of going to the ER. Consider the impact on your loved one: the potential for contracting another illness while there; how long it will take to be seen, assessed and treated; whether there is a possibility for worsening of the condition by being there; whether you can accompany them and how you will get back; and what your realistic expectations are of a cure.

Discuss and plan for likely future scenarios. Understand options and potential outcomes. For example, the success rate of resuscitating an elderly person with chronic conditions can be close to zero, and CPR and related processes can be extremely intrusive and traumatic. Would your loved one want that? Is quality of life more important than length? What happens if resuscitation is successful, but the condition is profoundly worse than before? What would you wish for if you were in their shoes?

If you think through those types of considerations, some of your decisions can be pre-made, or at least pre-weighed. You will also have had the time to investigate options and get supports in place to make either choice workable.

You will still have to make the final ER-trip decision, and this article provides two streams. One includes specific points to help make the decision. The second section explores what to do if you decide to go, what to take, what to do while your loved one is in the ER, and what to do afterwards -- whether you are discharged or not.

Do You REALLY Need to Go to The Hospital ER?First: Keep calm. Breathe. Your own agitation can magnify problem, make LO worse or less communicative.

1. Weigh out the impacts vs. potential benefit of going. Avoiding the hospital can sometimes be the healthy choice.Lewy-speech and communication is often compromised – if symptom is being described, can you assess it yourself? 
2. Listen carefully, be open, dismiss your own preconceptions, reflect to your LO, reinterpret, repeat.
3. Check for obvious possibilities first (UTI, infection, dehydration, respiration, constipation). Can you set up something with your General Practitioner to provide you with sample jars to make it simpler for you to bring in a specimen for testing, or get over-the-counter UTI tests?
4. Have a list of key contact people with phone numbers that you can call to consult. Have this with you at all times (electronic or printed, both is best).
5. Is there a house-call doctor option available? Telehealth? The cost may be worth it for the lowering of disruption and exposure to hospital environment.
6. Have plans, and have alternates: techniques to get off the floor if fallen, someone to call in emergency to help or check on the home. Instead of 911, there may be a local, non-emergency, number you can call to have firefighters come to get a person up from the floor.

Next week: More Timothy Hutton: When You Have To Go To The ER.

Timothy Hudson operates LewyBodyDementia.ca -- a Canadian website providing tips and techniques to make life better for LBD carers and those they care for. Information is prioritized to provide the biggest benefit, and as early as possible in the process.

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. (Nor is Timothy Hutton.) As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.