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

Saturday, June 29, 2013

Acupuncture, Accupressure and Massage Therapy

Several small studies have found that all of these more Eastern treatment methods work to decrease anxiety, agitation, and stress. The evidence from dementia caregivers is also positive. On the down side, results occur only with regular, sometimes daily, use and end soon after the treatments do.

Acupuncture: Treatment consists of needles inserted in strategic points on the body. Placement and number of the needles depends the conditions being treated. For dementia, the needles will often be in the head. Although the needles don’t hurt, a person must lie still for a period of time, usually 20 to 30 minutes, once the needles are inserted.

I convinced Carlton to try acupuncture to strengthen his voice. He started out going every Wednesday and right away, I could hear him better. But it didn’t last; by Sunday, his voice was weaker. We increased visits to twice a week and that carried him over. He’d been going for six months when our daughter had a baby. By then, he could miss occasional sessions and his voice stayed strong. We went to stay with her for a month so I could help out. By the time we returned home, his voice was so weak I could hardly hear him.   –Clara

Similar stories from caregivers abound, with reports that acupuncture:
  • Relieves anxiety, agitation, tension and stress
  • Improves sleep and speech
  • Decreases anger, combativeness and acting-out
On the negative side:
  • Treatment requires a trained and certified professional.
  • Results are temporary. Treatment must to be administered at least weekly and the results disappear if treatments stop.
  • Treatment can be expensive and is not always covered by insurance.
  • The treatment’s intrusive nature might be frightening to a person who is unable to understand the process.
  • Some people may not be able to lie still and leave the needles alone for the required amount of time.
Acupressure: This therapy is very similar to acupuncture except that hand pressure rather than needles stimulate the strategic points in the body. Used appropriately, acupressure appears to provide help similar to that of acupuncture:
  • Relieves anxiety, agitation, tension and stress
  • Improves sleep
  • Decreases anger, combativeness and acting-out
Acupressure is mild and non-intrusive, which gives it some advantage over acupuncture for the average LBD family. It is:
  • Easier to use and less frightening.
  • Safe for non-professionals to use. Care partners can learn to do it at home and care staff can learn to provide it in residential facilities.
  • Less expensive.
  • The milder treatments wear off sooner. Maintaining results may require several sessions per week, often daily.
  • Professionals do have more training and background knowledge and may be able to do a better job. However, acupressure is seldom covered by insurance.
Massage and touch therapy. Massage therapy, the of manipulating muscles and limbs, can treat the whole body or just certain areas. Light touch can sometimes be more effective than words.  Care partners report that it works well for:
  • Relaxation and sleep improvement
  • Anxiety, agitation, tension and stress reduction
  • Pain reduction. Massage is especially helpful if the pain is from tense muscles.
  • Direction. A light touch can sometimes work better than words to provide direction. It gently pulls the attention back to the job at hand and adds a sense of caring at the same time.
  • Care partners can learn to do basic massage at home.
  • Gentle massaging can be a time of togetherness between care partner and loved one.
  • Results are temporary. They require ongoing, sometimes daily, use.
  • Deep muscle massage requires strength and stamina a care partner may not have.
  • A professional masseuse has more training and strength but may not be covered by insurance or may be covered only for a limited time.
Summary: Although acupuncture may work better for stress reduction and related issues, its disadvantages may make it less attractive to the home-based caregiver than acupressure or massage. With some basic training, either of these therapies may be useful for treating stress related issues that otherwise might require medication. If medication is still required, the dosage needed will likely be decreased.

Friday, June 21, 2013

Non-drug Therapies for LBD

The difficulty with drugs used by modern medicine to treat LBD’s most bothersome symptoms makes it common sense to search for another form of treatment. And there are many types of non-drug therapies, some more effective than others, but all worth a try.

When working with a progressive disorder like LBD, learning to use and maintain still present abilities well is the goal. While this will not improve the basic ability, it often does result in improvements, as when a person can move more easily after physical therapy.

Used early in the journey, these therapies can delay the appearance of dementia and other LBD symptoms. Used later, after LBD is present, these same therapies continue to work their magic, decreasing the severity of symptom and the acting-out that often follows.

Whichever combination of the therapies below you choose, their function is to help make the journey with LBD less stressful and your lives more enjoyable and fulfilling. Used regularly, they can definitely improve quality of life for loved one and caregiver as well. However, they are not cures. Learn to judge a therapy’s success by how much your loved one maintains their status quo, not by how much they improve.

Physical therapy is familiar to most people with PD. While its primary purpose is to improve movement, any kind of physical exercise helps to maintain cognitive abilities as well.

Occupational therapy focuses on helping a person retain their daily living skills and maintain an active life.

Speech therapy helps a person improve their ability to speak and swallow.  This can help in addition to the suggestions in our 12/28/12 blog.

Music therapy touches senses and emotions and can sometimes reach a person when nothing else will. Other therapies and activities often include music. See our 5/2/13 blog.

Psychological counseling is valuable in helping individuals, couples and families deal with the losses and changes involved with a LBD diagnosis.

Spiritual therapy is the conscious inclusion of your own spiritual and religious beliefs in your lifestyle and in other therapies. Don’t overlook the support it provides.

Aromatherapy relies on the sense of smell and can be helpful with the Alzheimer’s patient but sadly, isn’t as useful when Lewy bodies are involved. They tend to destroy one’s sense of smell and make this type of therapy ineffective—except for the care partner, who may find it quite soothing.

Pet therapy is the use of pets to decrease stress and add comfort, support and safety. See our 4/27/12 blog.

Saturday, June 15, 2013

Hospice is for Life not Death

No, it isn’t the end of the journey yet. But it may be time to start using the help that hospice offers. To qualify, a physician must certify that a person with dementia requires assistance with activities of daily living, is incontinent, AND can’t have a meaningful conversation. The alternative is that a physician can certify a life expectancy of six months. This does not mean that your loved one will die then. I’ve known people who were on hospice for three years before they passed.

Most families use hospice for only three days. What a shame! Hospice offers so much and it is all free, funded by Medicare. Hospice is not about death—it is about life and doing everything you can to make each day as enjoyable as possible. It isn't only families that resist--some physicians do as well. They insist they can’t say with any certainty when their patient is going to die. That’s not necessary. They only need to say that the possibility is there.

You owe it to your loved one, yourself and your whole family to start using this service as soon as you can. Start researching early, before the need is there. Learn about the various hospice services in your community. Interview them and decide which one you will call when the time comes. Find out just what has to happen before your loved one qualifies. Ask how well trained about LBD are their doctors, nurses, aides, social workers, their who staff. Do they understand about fluctuating cognition? About the LBD drugs and drug sensitivities? About LBD's ubiquitous urinary tract infections? Do they listen to you, the caregiver? Hospice services abound. Shop around to find the one that will serve you best. Services include:
  • A nurse who visits at least once a week and supervises your loved one’s care.
  • A  physician who is available to prescribe drugs and for consultations.
  • A health care aide who comes in several times a week to help with baths and general care.
  • Equipment such as hospital beds, wheel chairs, walkers and other assistance tools.
  • Volunteers who visit with your loved one while you take a break.
  • A social worker who can provide counseling for the patient, caregiver and the whole family, as needed.
  • A chaplain who can provide spiritual help and grief counseling.
  • A respite and critical care center that provides care while caregivers take an overnight, or longer trip. It can also provide critical care for most problems such as dehydration.(Patients are transported to a hospital if major care is needed.) Hospice center staff are experts at dealing with frail, elderly patients.
Hospice use requires the termination of all non-palliative or life-extending treatments. Heart medications, which extend life, would be withdrawn. In contrast, most LBD drugs enhance rather than extend life and should be exempt.When shopping for a hospice service, ask about their policy for your loved one’s specific drugs.

With better care, more attention, and less stress, the condition of a person on hospice often stops declining and actually improves. In this case, Medicare stops payment and your loved one must wait until they meet  criteria again to re-enter the service. Showtime is an aspect of LBD's fluctuating cognition where a person appears better than they usually are for someone other than their caregiver. When this appears with the evaluating hospice nurse or social worker, it can also result in discontinuation of services. (See our 10/26/2012 blog for more about Showtime.) However, you can reapply immediately and return as soon as a physician verifies that your loved one still meets the qualifications.

Don’t let your resistance stop you from using this valuable service—and start as soon as you can. It is a gift to your loved one if you do and a disservice if you don’t.

Saturday, June 8, 2013

LBD and Social Security Disability Benefits

LBD can strike early, sometimes well before retirement. When someone in their 40’s, 50’s or even early 60’s becomes unable to work due to issues related to this disorder, the loss of a pay check can be devastating. There may still be children at home or in college, house payments, or any of the many other expenses that a person with an expected regular income generates. If this fits you or someone you know, Social Security Disability benefits can help. In the past, it has taken up to two years between applying and getting the benefit—if you get it at all. This has changed, and you can often get benefits quickly. However, it is imperative that you apply properly. Ram Meyyappan has volunteered the following article to guide you.

Lewy Body Dementia is one of the conditions that qualify under the Social Security Administration (SSA)’s Compassionate Allowances guidelines. This means that applicants who apply for disability benefits due to this condition can be qualified for benefits in less than two weeks.

In order to qualify for Social Security Disability benefits due to a diagnosis of Lewy Body Dementia under the Compassionate Allowances program, , you must:
  • Have documented clinical evidence of progressive dementia from your treating physician, neurologist, or psychiatrist that documents progressive dementia.
  • Document progressive loss of functional ability via an Activities of Daily Living (ADL) report or similar report completed by a caregiver or family member.
  • Include the above information with your claim for Social Security Disability benefits.
SSI and SSDI Benefits. There are two different types of programs available for applicants suffering from Lewy Body Dementia:

Social Security Disability Insurance (SSDI): To qualify for SSDI benefits, you must have earned a certain number of work credits during your previous work history. As a general rule, you must have worked five of the past ten years in order to have enough work credits to qualify. If you do not have any work credits or do not have enough work credits to qualify for SSDI, you may be able to qualify for SSI benefits.

Supplemental Security Income (SSI): This is a needs-based program. In addition to being determined disabled by the SSI, you must meet certain financial requirements. In order to qualify, your income must not exceed $710 as an individual or $1,066 per month as a couple. You must also not have more than $2,000 in assets as an individual or $3,000 in assets as a couple. If you can prove that you are disabled and you meet the financial criteria, you can be approved for SSI payments regardless of your work history.

To apply for Social Security Disability benefits, go to your local Social Security Office or fill out the online application at the SSA’s website ( When filling out the application, make sure that you are as detailed as possible in your answers. These answers will help the SSA determine whether or not you are actually disabled. Make sure that you include your physician’s documentation and caregiver’s ADL report to expedite the application process.

If you are denied Social Security Disability benefits, file an appeal. Most Compassionate Allowances cases are not denied, but it has been known to happen due to improperly completed claim forms or a lack of medical evidence. Consider retaining the services of a Social Security Disability attorney at this time. The appeal process consists of a reconsideration request, which is almost always denied, and a disability hearing, which is held before an administrative law judge. You will want an attorney representing you at this hearing. Statistics show that applicants who pursue the hearing process with legal representation are more likely to be awarded benefits than those who try to represent themselves.

Article by Ram Meyyappan
Social Security Disability Help
For more information on Lewy Body Dementia and Social Security Disability, please visit: