Treating depression and anxiety in Parkinson’s – webinar notes

The Michael J. Fox Foundation (michaeljfox.org) holds webinars every third Thursday. In general, these webinars focus on aspects of Parkinson’s Disease (PD) – symptoms, research, and treatment. During yesterday’s webinar time slot, a June 2016 webinar on depression and anxiety in PD was re-played.

The webinar explained the prevalence of depression and anxiety in the lives of people with PD, clarified when treatment is needed, and offered some treatment options. As depression and anxiety are common symptoms in the Brain Support Network disorders (LBD, PSP, MSA, and CBD), the webinar content applies to many in our community.

This time around, Brain Support Network volunteer Adrian Quintero listened in on the webinar, took notes, and shared them.

You can find a link to the June 2016 webinar recording here:

www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=8&e=1201845

Note you have to register before watching the recording. The speakers’ slides can be downloaded once you get to the archived recording webpage.

Here are Adrian’s notes…

Robin

———————

Notes by Adrian Quintero, Brain Support Network Volunteer

Depression and Anxiety in Parkinson’s Disease
Thursday, June 16, 2016
Michael J. Fox Foundation Webinar

Panelists:
* Dave Iverson- Contributing Editor, The Michael J. Fox Foundation
* Israel Robledo- Diagnosed with Parkinson’s in 2007
* Laura Marsh, MD- Executive Director of the Mental Health Service, Michael E. DeBakey Veterans Affairs Medical Center
* Gregory Pontone, MD- Director, Parkinson’s Neuropsychiatry Clinical Programs, Johns Hopkins University School of Medicine

How common is Depression and Anxiety for people with Parkinson’s?
Dr. Marsh says it’s very common, between 50 and 60 % of people. Often people develop depressive episodes within 5-10 years of PD diagnosis (before motor symptoms are present). There are brain changes in PD that affect mood regulation, often before motor areas of the brain are affected.

How do Depression and Anxiety go hand in hand?
Dr. Pontone says experiencing both is common in PD, as it is as well in the general population. Similar neurotransmitters are at play with both depression and anxiety (serotonin, norepinephrine, dopamine).

In PD, the most common type of anxiety people experience is a more generalized / longstanding anxiety, although this can vary person to person. When depression is active, anxiety is also worsened,

Israel’s story
Israel shared from his personal experience. He dealt with depression for about 20 years off and on before he developed any motor skill symptoms. He tried different medicines that were mostly ineffective with the depression. He started to develop motor symptoms around 37, and he had an increase in depression symptoms at that time. For Israel, the depression got much worse after his PD diagnosis. For him, he experienced suicidal thoughts and feelings, and he felt depressed both cause of the PD diagnosis and as part of the PD disease itself.

He also experienced an increase in anxiety after PD diagnosis. Israel described depression as a “mental tiredness,” feeling helpless, hopeless, he didn’t feel the joy he saw other people around him experiencing.

None of the anti-depressants he had been on had a noticeable effect on his mood. His movement disorder specialist prescribed a different kind that really made a difference, and helped shift his view/ attitude. He also received a lot of support from family and friends. He said what others can most do to be helpful is to be there for the depressed person, but don’t try to fix the problem for the person.

Change in perspective
Dr. Marsh described depression as “looking at the world through mud-colored glasses.” It’s an illness that changes one’s perspective on life. There are also physical symptoms that overlap with PD symptoms, such as slowness, muscle tension, slow thinking, and fatigue. It can be hard to know if such symptoms are PD or depression. The lack of pleasure can be an important factor indicating there could be a mood disorder that needs specific addressing. Depression can have serious life threatening symptoms- hopelessness/ suicidality being the most life threatening.

What causes Anxiety and Depression in PD?
Parkinson’s impacts dopamine and other neurotransmitters. These all affect mood regulation, which is being able to experience a full range of emotions, moving in and out of different emotional states. People can become stuck in one state or another, even when trying to do things that are normally pleasurable (such as the case with Israel).

Dr. Pontone describes what is happening as chemical imbalances, and it’s not due to a lack of trying on the part of the depressed person. It can be very hard to rebound into a normal mood state. He says with depression it can be hard to think clearly, and when suicidal thoughts are present, they can take on life of their own.

The experience of depression in PD and general population is similar, except there seems to be more anxiety that accompanies the depression with PD patients. Inadequate treatment for motor symptoms an affect depression treatment in PD.

Most people feel they can cope with PD, but not when they are depressed. Effective treatment for depression makes coping with PD much easier.

If motor symptoms are worsening, it could possibly be more related to mental health issues that need attention.

Treating depression in PD through Medication
It is very important to talk to the movement disorder specialist about all the meds person is on, to have the full picture (blood pressure medications, etc.). SSRIs are usually the first type of drug to start with treatment in persons with PD. Trials of drug can be similar as it is with general population, trying one class of anti-depressant, if it’s not effective, move into another class. (Moving from SSRIs to SNRIs to tricyclic anti-depressants). The SSRI class has lower side effect risk profile to start with.

For Israel it took going to a tricyclic class of medication before he found relief.

Treating depression has been shown to correspond with improved motor function day to day. Treating anxiety can help with “freezing” symptoms.

Cognitive changes can occur in PD. Both depression and anxiety are associated with cognitive difficulties. Treating depression and anxiety and managing those well is associated in overall improved function, including cognition. (such as person may be able to think more quickly).

When to treat for depression?
Israel suggests thinking about your outlook of life. He felt mentally tired and felt like things he did didn’t really matter. If one anti-depressant doesn’t work, don’t feel shame in getting help trying an other to see if that may help. There is stigma in our society around having mental health issues, more than physical health issues.

Important to treat mental symptoms as well as we would physical symptoms. For example if we saw someone with a broken leg, we would want to rush them to the hospital for treatment. We wouldn’t see the person as being at fault and tell them to walk it off! The mindset of someone depressed changes profoundly from illness state to well state. People can recover.

Other treatment options
* Talk therapy, CBT therapy
* Education around depression
* Support (family, friends, group)
* Learning skills to manage Depression and PD
* Exercise. There are studies with the general population that show exercise can really help with depression. (There haven’t been studies with the PD population). However, Dr. Pontone believes exercise helps mood in people with PD, and will help overall disease and management of day-to-day symptoms. Exercise can also provide social interactions and can help with getting outdoors.
* Social interactions can really improve mood, having one’s experience validated by a trusted other.

Medication treatment for Anxiety
Many medications that treat depression also can be used in treating long-term anxiety and anxiety disorders. Although, some people can experience an increase of anxiety at first. Benzos- Can help anxiety in the short term, but don’t help depression. Both doctors often avoid using cause of side effects, including risk of falls. But sometimes for short-term relief they can be helpful.

Newer treatments for Anxiety and Depression
* Brain stimulation treatments- like deep brain stimulation treatment for movement symptoms. Recently, doctors have been looking into using DBS for mood improvement.
* Less invasive option is something called trans-cranial direct current stimulation; which may have both motor, and mood benefits. At Johns Hopkins they are doing a trial right now.
* Magnetic field RTMS- not invasive, magnetic coil near brain, shown to be effective in PD and gen pop.

Overall, the doctors agree there are reasons to be hopeful.

 

Five points in helping elderly maintain dignity and sense of control

In this 2012 article in The Atlantic (theatlantic.com), two researchers offer caregivers “advice on how to best help the elderly maintain their dignity and sense of control, and strategies to ensure that they don’t sacrifice their health in the process.”

The advice focuses on five points:

1- Reinforce the positive.
2- Allow the senior to make decisions.
3- Remember that seniors are unique individuals.
4- Help them maintain social and family connections.
5- Focus on the little things.

I don’t find that this article has much to do about “self care,” but there may be worthwhile points here, such as focusing on the little things.

Though this article seems written for professional caregivers, I think the message can apply to family caregivers as well.

Here’s a link to the article:

www.theatlantic.com/health/archive/2012/04/how-to-care-for-your-aging-loved-ones-while-still-taking-care-of-yourself/255782/

How to Care for Your Aging Loved Ones While Still Taking Care of Yourself
by Hans Villarica
April 19, 2012
The Atlantic

Robin

 

“Family Meetings: Even when a Loved One Resists” – Conference Call Notes

CaregiverSOS (caregiversos.org) is a website run by the WellMed Charitable Foundation in Texas.  They offer some services nationally, including Caregiver Teleconnection, which are conference calls with speakers on caregiving topics.  Today’s teleconference was about family meetings.

Caregiver Teleconnection calls are archived within a week of the original presentation.  In about a week, you can find the archived audio recording of this teleconference at:

caregiversos.org/caregiver-teleconnection/first-steps-in-caregiving/

(You may need to scroll down a bit to find the list of archived recordings.)

Today’s conference call covered these topics:
– What is a family meeting?
– When should a family meeting be held?
– Why do we need a family meeting?
– Identify the purpose of the meeting.
– How to address the issue of a resistant elder.
– Who needs to attend a family meeting?
– Things to consider when inviting people to a family meeting.
– Where to have a family meeting.
– Tips for a successful family meeting.
– A Case Study
– Resources

There are four family meeting-related resources mentioned by the speaker:

1- Book titled “The Caregiver’s Path to Compassionate Decision Making,” by Viki Kind, 2010

2- MN Board of Aging webpage of family meetings at
mnaging.org/en/Advocate/~/media/MNAging/Docs/Advisor/caregiver/CW-HoldingFamilyMtg.ashx

3- Family Caregiver Alliance webpage on family meetings at
caregiver.org/holding-family-meeting

4- AgingCare.com webpage on family meetings at
www.agingcare.com/Articles/holding-family-meetings-foraging-parents-142664.htm

Brain Support Network volunteer Denise Dagan listened in on this morning’s call and shared these notes.

Robin

————-

Notes by Denise Dagan, Brain Support Network Volunteer

Family Meetings: Effective Planning for Aging – Even when a Loved One Resists
Speaker:  Kim Olmedo, LCSW, social worker
Caregiver Teleconnection (conference call), by Caregiver SOS
February 12, 2018

What is a family meeting?
Any formal, structured meeting of family members that may also include professionals and/or clergy to communicate about an older adult’s care due to declining health or difficulty functioning.

You can have a family meeting to discuss:
– What kind of care do they want at the end of their life?
– What arrangements must be made to care for their increasing medical needs?
– What arrangements must be made due to their declining cognitive functioning?
– Where shall they live after a medical crisis?

When should you have a family meeting?
– When there are unresolved issues, like the family doesn’t know what kind of advance care planning is already in place.
– When there are new problems, like the elder is no longer able to live alone.
– When safety is an issue, like driving, home safety (stairs, gas burners, etc.), inability to prepare meals or shop, etc.

What is decided during a family meeting?
* Resolve issues, like who will be the primary caregiver?  Who is the back up caregiver when the primary caregiver is ill, working, or on vacation?
* Identify goals, like the timeline for moving into assisted living.  What is the preferred outcome?  Is there a set outcome, or is a final decision something that can be negotiated?  Identify goals for rehabilitation or long-term care.
* What does the family want to accomplish?  What type of care facility is appropriate for their care?  Where should that facility be located?  Nearer to children or in the same community where they have been living.  What are the needs and issues of the care recipient?

Identify the purpose of the meeting:
* Sometimes, the purpose is simply to clarify things, such as an advance care planning meeting, where the issue is determining who the decision maker will be, learning the person’s wishes for end of life care, and completing advance directives.
* Other times there may be a specific purpose or issue, such as lack of safety in the home and what choices there may be to mitigate the safety issues, like private duty home care, moving the elder to a child’s home or into assisted living.
* Have an agenda to keep the meeting on track and moving forward.
* Sometimes, you need to break the decision-making process into a few meetings because it would take too long and be too overwhelming to do all at once.  Sometimes, during the first meeting you find information is missing and it is wisest to break and gather the missing information, then reconvene to discuss how to move forward.

How to address elders resistant to making changes:  
* How resistant is the elder?
* Giving them choices helps them to accept change and adjust well.  However, only present truly available options (that are feasible and which they can afford).  They may not be ideal options the elder prefers, but by having a choice the elder feels a certain amount of control.
* If there aren’t choices available, how can the news be presented in the best possible light?  See the Case Study for an example.  See “The Caregiver’s Path to Compassionate Decision Making,” Viki Kind.  In this book, the author explains how her father could not make decisions, but could have some choice in the big picture.  She researched care facilities and took him to her top two options and let him decide that.  Sometimes, presenting the facts of the situation helps an elder person be able to see that change is necessary.  Treating them as an adult with some choices is helpful to getting their buy-in.

Who should attend a family meeting?
* The care recipient?  Sometimes, No.  If they have dementia or critically ill, they are unable to participate.
* Close family – children and spouse.  Even distant children via Skype.
* Extended family.  Sometimes siblings, nieces, nephews, etc. are very involved.  Don’t leave them out.
* Neighbors and chose friends
* Professionals.  They can be the bad guy, deflecting blame from adult children who must be the hands-on caregiver and suffer wrath.
* A Geriatric Care Manager or Social Worker, if involved.  They can be an objective voice and present disappointing news to the elder person.  If family members present disappointing news, the elder may resent them and be uncooperative toward them.  It is best if a professional or clergy presents disappointing news to elders, especially if they have dementia.
* A long-time friend or clergy member as an ally to the elder person, so they don’t feel “ganged up on” or betrayed by the family & professionals.  Before you choose this person, be sure they will both support the elder as well as the family’s goals, so he/she doesn’t undercut the family’s efforts.

Where do you meet?
* At the elder’s home.  This can be the safest, most convenient place, but if you are discussing moving them from this home it can reinforce resistance to moving away.
* At a family member’s home, although this may not feel safe to the elder.  They may feel “ganged up on” or attacked by the home owner and family.
* At a neutral location; doctor’s office, hospital, lawyer’s office, church, a friend’s house, etc. can minimize extreme responses to the suggestion of a move.

Tips for a successful family meeting:
* Listen to all parties respectfully.
* Treat the elder as an adult and speak directly to him/her.
* Stay focused, don’t bring up family history, etc. that is distracting from the purpose of the meeting.

Case Study:
Lenora (late 70s widow) living at home with mild dementia & in-home caregiver whom she didn’t like.  Didn’t want a caregiver.  Move to assisted living was nearing.  Daughter, Emily, lived out of state and going through divorce.  These two had a difficult relationship and usually argued when talking.  Daughter asked Kim to mediate their phone calls.  Emily was increasingly worried about Lenora’s home safety.  Kim visited Lenora weekly and Lenora frequently commented on Emily’s wellbeing.  Emily and Kim had more frequent conversations about what to do next for Lenora.  Kim met Viki Kind (book author) and asked how to proceed to speak with Lenora about assisted living.  Viki’s input helped Kim realize that Lenora’s worry over Emily could help her transition to assisted living.  Kim acknowledged Lenora’s concern over Emily’s wellbeing and, together, Kim and Emily suggested Lenore move to assisted living as something Lenora could do for Emily to ease Emily’s worry over Lenora during her divorce and with all she had to do daily for her kids and full-time job.  Moving to assisted living in this case was cheaper than in-home care.  Lenora didn’t want to move, but felt she was doing something to help her daughter, so agreed and adjusted to assisted living.  Of course, she missed her home, which Kim and Emily validated, but they continued to thank her for making this adjustment for Emily.

Resources:
• Kind, Viki. The Caregiver’s Path to Compassionate Decision Making: Making Decisions for Those Who Can’t. TX: Greenleaf Book Group Press, 2010.
http://www.mnaging.org/en/Advocate/~/media/MNAging/Docs/
Advisor/caregiver/CW-HoldingFamilyMtg.ashx
https://www.caregiver.org/holding-family-meeting
https://www.agingcare.com/Articles/holding-family-meetings-foraging
parents-142664.htm

Question & Answer:

Q.  Support group leader now finds her own mother has dementia.  Mother lives independently, drives and has big house with several pets.  She has announced over the years she will never leave her home.  Is there anything besides in-home care?  Live-in caregivers?  Daughter lives 3000 miles away.

A.  Most of Kim’s experience with live-in care has not been successful.  There are some situations where it can work, especially if you can find someone younger who is more of a companion than caregiver or a grandchild who would benefit from having a free or cheap home in return for caregiving.  You may start with someone coming in to help with the animals to get her used to having someone coming in.  Once she realized how much help that is, that person (or someone else) may be able to come in and drive for her, or help with other things.

A.  Contact your local animal rescue services.  They may be able to provide an animal care volunteer or find adopted homes for some of the animals.

Q.  How have you found people manage when they have promised their family they would not put them in a nursing home?

A.  It’s not always realistic because of dementia or safety.  It may be physical reasons, like stairs.  Because women work so much more than prior generations, it is unrealistic to promise you will not be placed in a care facility.  Sometimes, a doctor can present reasons why they can’t stay in their home.  Care facilities are SO much better than they used to be, taking them to a few can make the option better than they imagined.

Q.  In Florida, the PACE Program provides in-home support (some dementia, depending on degree).  This can be a gap-filler before Medicare kicks in.

A.  Every state is different.  Area Agencies on Aging (AAA) can provide vouchers to cover some in-home care, but it will be minimal.  Your State’s AAA will know all the resources in your area.  Other resources:  Elder Care Locator: 1-800-877-8116, eldercare.acl.gov.  You can search by city and need (legal assistance, home modification, etc.).  Aging and Disabled Resource Center (ADRC) for your state/county may also be helpful.

A.  Sadly, demand is expanding, but resources are not.  Assisted living centers are expanding, but they are prohibitively expensive for many families.  There are very few federal dollars for long term care.  Mostly, long term care needs are covered by non-profits.

Q.  In a family meeting, how do you balance the conversation when one or more participants are dominating the conversation?

A.  It doesn’t happen very often, but sometimes there is one participant who defers to another, which can complicate the dynamics of the meeting.  Having an outside, objective participant helps with this.  Having an agenda helps.  Set an end time for the meeting helps.

Q.  My husband’s sons are not capable of care taking and they all have crazy work hours, so I am the conduit to coordinate communication.  I give them each information about advanced directive, etc.  It’s challenging.  It may not be feasible to have everyone in the same meeting.

A.  Use email, closed Facebook group to communicate with everyone simultaneously.  That way everyone received the same information.

Q.  My parents want to stay at home and die at home.  Dad has COPD and Mom has dementia.  It is more expensive than a facility.  Family fear is that we are too late for Mom to move her to assisted living because she needs more care.  Do you get to the point where you have to make the choice for them?

A.  Sometimes they are not able to make that decision.  Viki Kind talks about different kinds of decision making (sliding scale).  Their ability to make decisions depends on their level of dementia.  She had to make that decision for her Dad, but he could decide which one he felt most comfortable with, even which room he would have.  Getting all five of their children on the same page is another issue.

Q.  How is Viki’s sliding scale set up?

A.  If a person has no capacity that is one end of the scale and makes no decisions.  In some assisted living facilities staff puts out two outfits so they make a choice without being overwhelmed.  Depending on their level of dementia, you would limit their options.  They would not participate in medical decisions because they can no longer comprehend the options and potential outcomes, but can say who their medical power of attorney will be.

Q.  What happens for people who have zero resources?

A.  The family would ideally have an assessment from a geriatric care manager, but it costs several hundred dollars.  Beyond that you are looking at services from the Alzheimer’s Association or other organizations.  Often an elder winds up in the hospital and the social work staff will get involved and help the family find options for the elder’s future care.  Some churches have ministries for older adults so look outside the proverbial box.

Q.  How does somebody find a geriatric care manager.  Even though it costs a few hundred dollars it is well worth it, especially if your family dynamics are challenging.

A.  aginglifecare.org – Professionals with training and experience on doing aging assessment.  You may be able to access them through your hospital’s social work office, if your elder is already hospitalized it is worth asking.

“The Coming Family Caregiver Crunch: 8 Tips to Survive” (Forbes)

This is an interesting article from Forbes magazine (forbes.com) about the idea that 90% of family caregivers are “contributing to and/or coordinating finances for their loved ones. … On average, they’re spending $7,000 a year out of pocket. … Three out of four family caregivers have never discussed their financial role with their care recipient. … Do your parents have a financial caregiving plan? Hint: it’s you. For many baby boomers, it’s an unspoken plan.”

The authors of the study on which these findings are based propose eight tips for adult children caregivers to survive this “caregiving crunch”:

1- Start a family conversation about caregiving.
2- Seek out financial wellness program at work.
3- Explore community resources. 
4- Sign a financial power of attorney. 
5- Sign a health care power of attorney.
6- Write a will and update beneficiary forms.
7- Share financial account information. 
8- Set up a financial advisor meeting.

Here’s a link to the article:

www.forbes.com/sites/ashleaebeling/2017/11/01/the-coming-family-caregiver-crunch-8-tips-to-survive

The Coming Family Caregiver Crunch: 8 Tips To Survive
by Ashlea Ebeling, Forbes Staff
1 November 2017
Forbes

Robin

“Choose Your Attitude for the Journey” (empowering caregivers for the long journey)

Though this handout is for a dementia caregiving class by a woman whose husband had Lewy body dementia, I think this resource applies to all caregivers. In the few places below where you see “LBD,” replace that term with the disorder with which you are coping (if it’s not LBD).  See what you think….

Online friend Pat Snyder’s husband John died with Lewy body dementia in November 2015. She is the author of a wonderful book for those coping with the early stages of LBD titled “Treasures in the Darkness: Extending the Early Stage of LBD” (available through Amazon.com). Pat generously gave us a copy, which is circulating among local support group members.

Pat is teaching a dementia caregiver class in Wake Forest, NC. Her mission is to teach as many “rubber meets the road” tools and techniques as she can, in a context of preserving personhood for the patient while educating, encouraging, and empowering the caregiver.

Pat recently shared the notes from the first lesson of this caregiving class. She recommends five initial steps that all caregivers take at the beginning of their caregiving journey so that they can be strong for the duration of that journey. The five steps are:

• Be positive
• Be proactive
• Be perceptive
• Be persistent
• Personify the disease

The lesson goes through these five points. Pat gave permission for me to share her lesson notes here.

Robin
————————-

“Choose Your Attitude for the Journey” (Lesson 1**)
from Dementia Caregiver Class in Wake Forest, NC
by Pat Snyder ([email protected].com)
February 2018

There are five first steps that I recommend for you to take as you begin your dementia caregiving journey. These approaches will strengthen you in that role for the duration:

• Be positive
• Be proactive
• Be perceptive
• Be persistent
• Personify the disease

Be positive.

After your Loved One’s diagnosis of dementia you are likely to be overwhelmed with negative emotions. These emotions are your first hurdle to overcome, and they tend to be ongoing.

Therefore, a commitment to use positive choices to overcome negative feelings is a technique that will serve you well throughout your time as a caregiver.

Using a positive attitude to overcome a negative situation is not denial of it but a conscious effort on your part to override its impact. There are a number of ways to address this choice of being positive. It takes self-discipline and commitment to fight back an enemy that is trying to steal precious moments from your lives. It often involves doing the opposite of what you are feeling in the moment. So first, identify that negative feeling. Then choose to go in another direction. For example, if you feel sad, try to spend time with a friend who makes you laugh. If you feel empty, make a list of three things for which you are grateful.

These kinds of choices may feel simplistic and artificial when you first start to practice them. Over time, you will feel the benefit of not allowing the negative emotions to swamp you, keeping you in a slump of inactivity and helplessness. You will begin to feel empowered and purposeful in your role. Then you will realize that your positive choices have a profound impact on your Loved One’s experience of dementia.

Be proactive.

You need to take action and not just react to what happens. Being proactive is an ongoing requirement. As you begin to assume your role, these actions will empower you:

• Learn about dementia symptoms.
• Learn about treatments for LBD symptoms.
• Learn about non-pharmacological (non-drug) interventions.
• Learn to identify the specific triggers that affect your Loved One’s experience of LBD.
• Find the right doctor who knows how to treat LBD
• Connect with other LBD caregivers to continue strengthening yourself.

When your Loved One received the diagnosis, you likely also received some printed materials that defined LBD and directed you to some helpful resources available in your community. However, you will need to seek out more in-depth knowledge in order to fulfill your role as the caregiver.

Do not overwhelm yourself in the beginning. Learn about the basics and gradually add more knowledge. It is important to get information from reliable sources. Use only trusted print and non-print resources. Look at the websites of government agencies, universities, hospitals, and associations like LBDA. Find medical journals, articles, and books written by experts and online support groups that offer reliable information and social support. Search for the right doctor who specializes in LBD care or who is willing to learn about proper treatment for this challenging and complex disease. Do not settle for one who does not respect you as the key member of the care team.

Be perceptive.

Be sensitive to the emotional and psychological impacts that dementia can have on you and your family. If left unaddressed, these things can have devastating physical consequences for you and your Loved One. They may determine how gentle the journey is for all of you. The diagnosis is likely to magnify any pre-illness emotional and interpersonal issues. Therefore, it is important to clearly identify those and learn how to manage them better. Doing this could provide significantly better outcomes for everyone. Consider including a counselor as a member of your health care team to help you address communication issues that need attention, relationship dynamics, and any pre-illness issues that can affect how you manage the symptoms of LBD, forgiveness of past hurts, and grief issues.

A second element of being perceptive is to be sensitive to your Loved One’s symptoms. You see him every day, unlike doctors who see him only for a short time during office visits. You need to observe and record changes in physical, psychological, and behavioral symptoms. Report these changes to the dementia specialist and work together to find solutions. Dementia patients may practice “Showtime” behaviors at doctor appointments, which make them seem to be much better than they are on a daily basis at home. Your report to the doctor keeps the information balanced, honest, and accurate. Sometimes changes in medicine can bring about an improvement of symptoms. At other times, non-drug choices can address these issues.

The third element of being perceptive is to identify the specific triggers that affect your Loved One’s experience of LBD in a negative way. This is where many non-drug interventions can have huge positive impacts on living daily with dementia.

Examples of simple changes with big impacts may be:
• Softening the light in the room
• Using oils like lavender to calm agitation
• Playing favorite music
• Having only one person speak at a time while in the room
• Explaining what you are about to do before you begin to do it

These may seem like small things, but they can make a big difference in the person’s disease experience. You must be alert and perceptive to see what things trigger agitation or frustration. Then you can communicate with key individuals how those things must change in order to make the best care choices.

Be persistent.

Being an dementia caregiver is a long-term commitment. It is a marathon, not a sprint.

The term Lewy roller coaster for LBD folks has been coined to describe the experience due to the ups and downs in cognitive, physical, behavioral, sleep, and psychological symptoms. Your choice to be positive, proactive, and perceptive must be of a continuing, ongoing nature. You need to persist through these fluctuations as your Loved One progressively declines. It is a daily choice.

As new symptoms emerge over time, you will need to learn more and stay up to date about research and treatments that could be helpful. As your care continues, you will monitor disease symptoms daily. At times, you may question the efficacy of an intervention. Is the intervention working, or is this symptom simply a manifestation of the fluctuations of the disease? This is a typical question for you to ask in your role as care partner. Sometimes you will use your intuition correctly and change course. Other times you may not discover the answer. That is also typical, so do not blame yourself at these times.

You will also monitor those who are involved in your Loved One’s treatment and support. Part of your role is to teach any new person on the health care team about your Loved One’s expression of dementia. You may also need to teach them how to best approach the situations that arise in his care. You will deal with significant family members and friends who encounter him. All these things involve a consistent approach on your part. If your Loved One moves into a nursing home or similar facility, your role as advocate and educator will escalate.

Your steadfast persistence will pay off in a gentler LBD journey for everyone. This is one of those places in life where you clearly will make a difference. It is not easy, but it is doable — and it is worth it.

Personify the Disease

One of the most helpful decisions I made early in my Lewy Body Dementia journey with my husband was to personify “Lewy”. It had a huge impact on my grandsons as well as on John and me.

John’s neurologist, Dr. Daniel Kaufer, told us on our first appointment with him that preserving personhood was our key goal for John in all decisions about his care. That resonated with me. It became my touchstone when I had to decide what to do as various symptoms and events presented themselves in our journey.

In my mind, I separated John from his disease. I gave the disease a personal kind of name—Lewy. It gave me someone to blame, who clearly was at fault for whatever was happening. It gave me the power to separate John from actions or words he might do or say that were hurtful. “That’s Lewy talking right now. Just ignore it.” I could say that to myself and know that I was correct. John was not at fault. Truth was not being spoken. A clear enemy was in the room with us, and my job became how to outsmart that enemy. It gave me emotional distance so I could think clearly, problem solve better, and respond kindly to John.

I saw it as a kind of psychological and emotional warfare for a good purpose. Although my enemy was formidable, I still won significant battles along the way that made our overall experience of LBD less damaging to both of our lives. There was victory and empowerment in winning those battles. I was preserving personhood for John and for myself by personifying Lewy.

It also worked beautifully with our grandsons, who were young when John had LBD. When the oldest, Michael, was about five years old, he was chatting happily in the backseat of our car as we drove along a lovely country road. All of a sudden, John barked at Michael harshly and told him he needed to be quiet. Before I had time to think it through, I spoke up and said, “Michael, that is just that mean old Lewy talking to you right now. Your Pops would never talk to you like that. Pops loves you, Michael.” Fortunately, John responded with silence. This caused me to begin using the “mean old Lewy” explanation with all the grandsons from that point on. I would tell them if they entered the room and Pops looked angry or spoke harshly to just leave the room right away. “That was Lewy, not your Pops. Wait a bit and go back to see Pops later.” The boys all seemed to accept that explanation as making complete sense to them. It likely worked because it matched what happened to them. They would reenter the room later and find their sweet Pops happy to see them as usual.. Sometimes I would speak to John and remind him to be especially kind to the boys. We also tried to have only one child at a time in the room with John if he was agitated or tired.

Another example shows how personifying Lewy played out with John. One day John began to have trouble speaking. He babbled a kind of gibberish. I touched his head tenderly and said, “Sweetheart, I can see that you know exactly what you want to say. Right now Lewy is messing with the connection between your thoughts and your ability to speak. Close your eyes, take a nap, and when you wake up you will be able to say whatever you want.” John closed his eyes immediately and went to sleep. When he awakened, he was able to speak normally. That level of trust had been established over a period of years along with the habit of blaming Lewy when a bad symptom presented itself. John had learned that Lewy came and went, and he trusted me to point that out for him. It seemed to keep his anxiety lower.

Personifying Lewy gave the boys more of a sense of empowerment. They clearly stopped taking it personally when John’s disease made him appear mean to them. It also gave them someone to blame for what was happening. It made everything make more sense somehow for all of us while it protected John from the blame he did not deserve. Personifying Lewy enabled me to do a better job of separating the disease from my husband, thereby preserving his personhood while protecting my own heart from being bruised by some of Lewy’s antics.

These first steps lay a foundation for a more gentle journey. Each of them helps you to stay ahead of the disease so you have more control over your daily life. Each of them will make you a better caregiver.

 

**A draft form of this lesson first appeared in a free online booklet, “Prepare to Be an Engaged LBD Care Partner,” by Rosemary Dawson, Jeff Maruna, and Pat Snyder. The booklet may be found here:

www.lbdtools.com/files/CPGuide%20Dawson.pdf

**A briefer form was published by LBDA.org in Resources section.

 

“Life After the Diagnosis: Expert Advice on Living Well with Serious Illness” – podcast

Last summer, Steve Pantilat, MD, was interviewed by GeriPal, a blog (geripal.org) that focuses on geriatric medicine. Dr. Pantilat is a palliative care physician at UCSF. The interview occurred shortly after his book was published — “Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers.”

We posted a link to the podcast of the interview on Brain Support Network’s Facebook page at the time, but I just got around today to listening to the podcast. Here’s are some highlights for me:

* “There’s this idea that somehow if we talk about what’s really happening, like how serious your prognosis is, or the fact that you have in fact a life limiting illness, that somehow that’s gonna take away hope and so, let’s not talk about it, we need to leave people with hope. But I worry that what that leaves people with is false hope. And that fundamentally, false hope is no hope. And if we talk about hope, we can really promote it and we can encourage it and to recognize that people have hope, even when we take care of people who are days away from the end of life, who are actively dying. They still have hope for things that are meaningful to them. And by talking about it, we can really encourage people to have hope, and to build on and to recognize, yeah, there’s hope for cure, sure. But there’s hope for a lot of other things that can coexist within the hope for cure, or alongside that hope, and we can encourage that.”

* “[We] talk about a good death but I don’t see death as good. I’ve seen it only as being sad and filled with grief and loss, and nothing we do seems to make it good. And the tragedy … I recently took care of a forty-two-year-old woman with an eight-year-old child in the hospital. She died in the hospital. People would say, ‘Oh, that’s a bad death,’ but you know, what was bad is that she died. And if she had died at home, it wouldn’t change the tragedy and the sadness and the grief and loss associated with her death.”

* The interviewer mentioned a story in the book about Sergei, an 80-year-old whose wife has dementia. Sergei hopes that the wife will get better. The interviewer asked Dr. Pantilat if this is false hope. “That I would say is false hope, we know that dementia does not reverse. …I realize that there was nothing I could say that would fundamentally change his hope in his wife getting better and I realize my role at that point was just to support him in that hope. … But, you know, there’s a time to push and there’s a time to accept and support and that was a time to accept and support.”

* “Realistic prognosis focuses hope. They give patients reliable and realistic information they can use to make decisions.”

* “[We] often give people this false choice, we say, ‘Do you want quantity of life or quality of life?’ And it’s somehow, if you want quantity of life, you have to accept all the possible interventions to attack your illness or to treat your illness. Every chemotherapy regimen, every procedure, and so on. And what we know now is that, in fact, there comes a time when some of those things not only don’t help you live longer but may actually ruin your quality of life. Chemotherapy in the last six months of life, for example. And that somehow if you want quality of life, it means you’re not gonna live quite as long. And what we know from Palliative Care, from the research, from the literature in our field, is that you can get both. And Palliative Care helps you live better and at least as long, maybe longer, but certainly no shorter, and you can live well and long. And part of my book, the point is to really get people to engage with and ask for and demand Palliative Care to live well and to live long.”

* He talks about using a word like “progress.” “Like progressive illness, your illness has progressed. ‘Oh, that’s great!’ No, that’s terrible. So I now think about this when I talk with my patients and I say, ‘Your heart failure is worse,’ rather than saying, your heart failure has progressed…”

* “Dignity is one of those very loaded words that’s in fact very personal. … And so we often use this word as a code for certain things. Like, respect your dignity by withdrawing interventions and what we should … If we’re gonna use that word, we [physicians] really need to embed it in what the patient and family think of as dignity and their interpretation of dignity and try to support that idea, not our own.”

* “If despite CPR, you die, your final moments will have been spent at the center of a tornado and while a team works on your body, your family will be watching the horror or be banished from the room. In either case, they won’t be with you, at your side, holding your hand.”

* “I think there’s a way in which people with serious illness think, ‘Why not? Why not just try it?’ And the evidence really suggests that when your illness is very advanced, to the point that you die of it, CPR isn’t really gonna help you. It’s not gonna help you at all and you’re gonna end up sicker. I think there’s a way that people think it’s like reset the computer. … But we all know that even if you survive CPR, you’re gonna be worse off than you were and there are implications, maybe not for you, I think this idea that somehow it’s suffering for the patient, I think is not right. We do CPR generally on people who have died. And so I don’t see that there’s a lot of added suffering to the person who’s died but there is this impact on their loved ones who might be at the bedside. And we have to remember what their experience is as well.”

* “[We] have to be careful to remember that all we’re saying is, ‘When you die, when your heart stops and you stop breathing, we will not try to revive you because it won’t work. We’ll let you die peacefully.’ But that has no bearing on all the other care that we will continue to provide. And we have to emphasize what we’ll continue in the meantime and all the care we will provide to make sure people are comfortable and well cared for so that we don’t see this decision about CPR at the very end as somehow implicating something more than it is.”

You can read the full transcript and listen to the podcast here:

www.geripal.org/2017/07/life-after-diagnosis-podcast-with-steve-pantilat.html

Dr. Pantilat was also interviewed at the Commonwealth Club of California last summer. A recording of that interview can be found here:

www.commonwealthclub.org/events/archive/podcast/life-after-diagnosis-how-live-well-serious-illness

And he was interviewed on KQED’s Forum show last summer. That recording is here:

ww2.kqed.org/forum/2017/08/01/living-well-with-chronic-illness/

Happy listening!

Robin

 

“Caring for the Caregiver: How to Prevent Burnout”

In mid-January 2018, CBC, a broadcasting network in Canada, aired a documentary called “The Caregivers’ Club.”  It is the club that no one wants to join.  This documentary is only viewable in Canada.  (I couldn’t find it on YouTube.)  The documentary follows three families coping with dementia.  I suspect that most of the documentary applies to all caregiving situations, not just those coping with dementia.

There are several good articles on the CBC’s website about caregiving.  These articles accompany the documentary.  One of the articles is on “Caring for the Caregiver: How to Prevent Burnout.”  Though the article is focused on dementia caregiving, most of it applies to all caregivers.

The author, an occupational therapist, shares these warning signs of caregiver burnout:

• You are not enjoying social activities and friends
• You find it a chore to leave the house
• You are more irritable and have mood changes
• It is difficult to concentrate and get things done
• You are having trouble sleeping
• Your weight may be affected (up or down)
• You feel anxious or depressed
• You have physical complaints such as headaches, pains
• You get sick more often, with both minor and major ailments

Most of the article is copied below.

Robin
—————————-

www.cbc.ca/cbcdocspov/features/caring-for-the-caregiver-how-to-prevent-burnout

Caring for the Caregiver: How to Prevent Burnout
Published about Sunday, January 14, 2018
CBC
by Nira Rittenberg

As Canada’s population ages, the number of caregivers who are involved in dementia care is on the rise.  The latest statistics from the Alzheimer Society show that there are 25,000 new cases of dementia every year and by 2031, the number of cases will increase 66% from today.

Individuals with dementia often require quite a lot of care, and it’s usually the family that provides it. CBC documentary, The Caregivers’ Club profiles three Ontario families as they struggle to care for their loved ones.

Caregivers for People with Dementia Burnout More Often
Caregiving is challenging, and people with dementia often require long care hours. This type of caregiving is associated with higher levels of burnout than non-dementia caregiving.  Research has shown that it is much more difficult to do than caring for someone with a physical disability.

For almost all carers there is the balancing act of family life, careers and other relationships. Some caregiver demographics, such as homosexual, Indigenous and caregivers of individuals with early onset dementia, may experience additional stressors in their roles. Each of these caregiver groups has challenges that are specific to their situation.

Early onset dementia caregivers are often in the phase of life where they are raising younger children and carry more of a financial burden. They may have not fully developed their caregiving skills and feel more unprepared for the task. Homosexual caregivers often have to deal with prejudice and lack of sensitivity in the healthcare system; while Indigenous populations may not have access to mental health services.

Stress Warning Signs
The stresses of caregiving can be insidious and often trace back to the caregiver neglecting their own mental and physical health. These triggers may happen slowly and make burnout hard to identify.

Some warning signs include:

•         You are not enjoying social activities and friends
•         You find it a chore to leave the house
•         You are more irritable and have mood changes
•         It is difficult to concentrate and get things done
•         You are having trouble sleeping
•         Your weight may be affected (up or down)
•         You feel anxious or depressed
•         You have physical complaints such as headaches, pains
•         You get sick more often, with both minor and major ailments

Caregiving Will Not Change the Course of the Dementia
Some caregivers feel the self-imposed responsibility that their efforts can somehow change the course of the illness by keeping the individual with dementia “happy and healthy.”  Many caregivers report that they end up feeling upset with the person they are caring for. Though they are aware that feeling this way is not rational, it makes them feel worse.

Many caregivers saddle themselves with unrealistic expectations of what they can handle on a daily or practical level. Money, resources and ability to manage may not be adequate and can make a caregiver feel impotent.  The lack of ability to control this situation combined with a complex health care system can be difficult and frustrating.

Fortunately, not all symptoms occur for every caregiver, and there is no timeline on when they will feel that things are not working.

How to Access Support for Caregivers
The good news is research has shown that support can make things easier for caregivers.

Interventions can come in different forms like receiving help to get things done and assistance with housework, bathing or other tasks.

The caregiver also needs support to deal with the stress of watching someone they care about deteriorate to help them cope with the emotional struggles that are part of the journey.

These supports can come from both professionals as well as peer caregivers. Every situation is different and supports should be built around need. There are a variety of services and resources that can help. The key is to find one that suits your family.

Reach out to your doctor or your local health agency. Find someone who will help your family to find what it needs to get the care, education and support to be both effective and healthy.

Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Center and in private practice. She is the co-author of Dementia: A Caregiver’s Guide.

“What is Anosognosia and How Does it Impact You as a Caregiver?”

There’s a good post on today’s The Caregiver Space (thecaregiverspace.org) blog about anosognosia. This is the term used when a person with dementia is unaware he/she has dementia. The author offers several guidelines to caregivers. I especially like the last one — Foregiveness is important for all concerned. Here are the guidelines:

* Remember they genuinely don’t know they have dementia.
* Don’t try to convince them they have deficits.
* Understand why anosognosia occurs.
* Don’t expect the person to stick to a promise or agreement.
* Try to encourage their independence as much as possible within safe boundaries.
* Give them a couple of choices rather than leaving things open ended.
* Continue to assess.
* Honesty may not always be the best policy for someone with dementia.
* Forgiveness is important for all concerned.

The full blog post is copied below.

Robin



thecaregiverspace.org/what-is-anosognosia-and-how-does-it-impact-you-as-a-caregiver/

What is Anosognosia and How Does it Impact You as a Caregiver?
by Iris Waichler
The Caregiver Space
Feb 1, 2018

What is Anosognosia and How Does it Impact You as a Caregiver?
One of the toughest scenarios caregivers have to face is when they are taking care of someone who has dementia and is unaware of it. This condition can occur with people who have Alzheimer’s or other forms of dementia, strokes, or brain disorders. This condition is called anosognosia. This presents numerous challenges for both the caregiver and the person they are caring for. What are the most useful strategies you can employ as a caregiver in this type of situation? Here are some useful tips to offer guidelines:

Remember they genuinely don’t know they have dementia.
Keep in mind that person genuinely does not understand their abilities and limitations. It is a medical condition. They are not playing games or in denial about their ability to function. Try not to cast blame in this situation. Be as patient and understanding as you can reminding them your goal is to help keep them as safe as possible and maintain a reasonable quality of life given the medical issues you are faced with.

Don’t try to convince them they have deficits.
Trying to get a person with this condition to understand they have specific limitations will just cause you to get angry and frustrated. They are unable to comprehend or accept what you are saying. They will become defensive and possibly angry or agitated. It will only heighten conflicts in your relationship and hinder your role and ability as a caregiver.

Understand why anosognosia occurs.
Those who do research in this area report this condition occurs where there is damage in the frontal lobe area of the brain. This is the area of the brain the includes functions like problem solving, and higher functions like abstract reasoning and spacial orientation. The New York Times reports that “estimates up to 42 percent of people with early Alzheimer’s Disease have symptoms of anosognosia.”

Don’t expect the person to stick to a promise or agreement.
Trying to bargain with people with this diagnosis is not useful. They will not remember what they agreed to or that you even had a discussion about it. Visual cues may help. This means writing things down to reinforce the message you are trying to deliver. Making an environment as safe as possible is also a good strategy. For example, having a coffee maker that automatically turns off rather than relying on someone with memory issues to remember.

Try to encourage their independence as much as possible within safe boundaries.
It is very tempting to just jump in and do things for someone who needs help or may not remember all the steps involved in completing a task. Try to be realistic about what they can and cannot. Being there when they cook to safely supervise in subtle ways is an example of maximizing independence within safe parameters. Try to find the right balance for that given moment. Remember it may not be true in the future depending on how they are doing.

Give them a couple of choices rather than leaving things open ended.
For example, rather than saying when would you like to go the grocery store offer the choice of Tuesday at 10am or Friday at 1. Keep the choices in a way that meets their needs and is a favorable scenario for you as the caregiver.

Continue to assess.
Remember the person you are caring for may have good days and bad days or moments in the day where they are very appropriate and lucid. Watch for a pattern of increased decline in function or there may be times of day where they do better or worse. Have a healthcare professional help you with this assessment and be flexible and prepared in terms of structuring supportive services based on what you observe.

Honesty may not always be the best policy for someone with dementia.
There are times where engaging in a battle may not be the best thing to do for you as the caregiver. By definition people who have memory loss forget things and it is not willful. If they forget that a close friend has moved away you may not want to remind them of that. Does it really matter if they think they worked at a bank and really didn’t? Pick and choose the times when you must be honest or transparent with them. Your strategic guideline should be any tactic that reduces stress for you as the caregiver and the person you are caring for is a good direction to take.

Forgiveness is important for all concerned.
You need to remind yourself that the person you are caring for is not necessarily acting out of malice when they can’t acknowledge or differentiate what is real and what is not. Try to be as patient and forgiving as you possibly can. Give yourself a break or timeout if the situation is escalating or frustration or anger are emotions that are growing. You must always remember to forgive yourself as a caregiver. There will be moments when you get angry or frustrated or overwhelmed. You must be able to forgive yourself. If this occurs with increased frequency it is a signal that you need support as a caregiver and some respite time to recharge.

About Iris Waichler
Iris Waichler, MSW, LCSW is the author of Role Reversal How to Take Care of Yourself and Your Aging Parents. Role Reversal is the winner of 5 major book awards. Ms. Waichler has been a medical social worker and patient advocate for 40 years. She has done freelance writing, counseling, and workshops on patient advocacy and healthcare related issues for 17 years. Find out more at her website http://iriswaichler.wpengine.com

Feb 2018 Northern and Central California Parkinson’s Group Guest Speakers

Here’s a list of guest speakers or programs at various Northern and Central California Parkinson’s support group meetings for February 2018. I’ve deleted a few items that probably aren’t of interest to the Brain Support Network community (because they are only applicable to those with PD or are focused on deep brain stimulation).

With my atypical parkinsonism (DLB, PSP, MSA, CBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are Parkinson’s support group meetings:

  • Santa Rosa, Saturday, 2/3: UCSF psychiatrist Steven Hall, MD is speaking on non-motor aspects of Parkinson’s. I am assuming he will address depression, other mood issues, and anxiety. Perhaps he’ll address hallucinations and delusions.
  • Pacific Grove, Tuesday, 2/13: Movement disorder specialist Salima Brillman, MD is speaking on hallucinations and delusions in Parkinson’s. This is likely of interest to those in our Lewy body dementia group. Note that this talk is sponsored by the maker of a medication for hallucinations.
  • Fremont, Monday, 2/26: Movement disorder specialist Salima Brillman, MD is speaking on hallucinations and delusions in Parkinson’s. This is likely of interest to those in our Lewy body dementia group. Note that this talk is sponsored by the maker of a medication for hallucinations.

As always, I recommend driving no more than 30 minutes to attend any of these meetings.

You can find meeting details (meeting location, group leader contact info, RSVP process, etc.) here.

Robin

**********************

San Lorenzo (San Leandro)
Thursday, 2/1, 10-11:30am
Guest Speaker: Michael Galvan, Community Resources for Independent Living (CRIL)
Topic: Assistive devices to help with PD
RSVP?: No.

San Jose/Willow Glen
Friday, 2/2, 10am-noon
Guest Speaker: Jason Stewart, director of advocacy, Americans for Cures Foundation
Topic: Proposition 71 – California’s landmark stem cell program
RSVP?: No.

Visalia
Friday, 2/2, 10:30am-noon
Program: Watch and discuss “Managing Parkinson’s – Straight Talk and Honest Hope,” Parkinson’s Heartland video
RSVP?: No.

Santa Rosa (Sonoma County)
Saturday, 2/3, 1-3:15pm (guest speaker 1-2pm)
Guest Speaker: Steven Hall, MD, psychiatrist, UC San Francisco
Topic: Parkinson’s – more than motor symptoms
RSVP?: No.

Lodi
Monday, 2/5, 10am-noon
Program: Break into two groups – persons with Parkinson’s and caregivers
RSVP?: No.

San Andreas (Calaveras County)
Tuesday, 2/6, 10am-noon (speaker 10:30am-noon
Guest Speaker: Kendall Gervin, OT, occupational therapist
Topics: Adaptive equipment for independence and self-care; home safety; exercise to maintain balance
RSVP?: No.

Soquel (Santa Cruz County)
Wednesday, 2/7, 1-2:30pm
Guest Speaker: Peter Lin, MD, movement disorder specialist, Valley Parkinson Clinic, Los Gatos
Topic: New developments in PD
RSVP?: No.

Millbrae/Magnolia
Thursday, 2/8, 1:30-3pm
Guest Speaker: Keith Harband, NewEnamel.com
Topic: Dealing with dry mouth
RSVP?: No.

Redding
Friday, 2/9, 1-3:30pm
Guest Speaker: Vibra Healthcare representative
Topics: Occupational therapy program; new changes coming to their Parkinson’s outpatient program
RSVP?: No.

Yuba City (Tri-Counties)
Monday, 2/12, 1-2pm
Guest Speaker: Peter Daley, III, chief, Yuba City Fire
Topics: YCFD services; disaster preparedness for the elderly and disabled
RSVP?: No.

Lakeport
Monday, 2/12, 2-3:30pm
Guest Speaker: Phil Myers, group leader
Topic: Research status
RSVP?: No.

Auburn Caregivers (those with PD can join this meeting)
Tuesday, 2/13, noon
Guest Speakers: Team of women from district attorney’s office
Topics: Aging safely – avoiding fraud, scams, and other stumbling blocks
RSVP?: No.
Note: Those with Parkinson’s are welcome at this particular meeting.

Pacific Grove (Monterey County)
Tuesday, 2/13, 3-4:30pm
Guest Speaker: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic: Beyond motor symptoms in PD, including hallucinations and delusions
RSVP?: No.

Palo Alto Young Onset Parkinson’s
Tuesday, 2/13, 6:30-8pm
Guest Speaker #1: Aura Oslapas, StrivePD
Topic #1: StrivePD application
Guest Speaker #2: Ruth Gardner
Topic #2: Dental hygiene and PD
RSVP?: Yes, if this is your first time attending. Please RSVSP to Martha Gardner, group leader, at least one day in advance.
Note: Group returning to the old location at Lucile Packard Children’s Hospital

Menlo Park/Little House (New meeting location! No longer at Avenidas
in Palo Alto.)
Wednesday, 2/14, 2-3:30pm
Main Program: Please bring one tip and one gadget/equipment (if carry-able) that you recommend to people with Parkinson’s or caregivers of those with Parkinson’s
Guest Speaker: Amaris Martinez, Stanford Neurology, giving a brief overview of Stanford PD plasma study
RSVP?: No.

Merced
Thursday, 2/15, 10am-noon
Guest Speaker: Rekha Rishi-Khanna, SLP, speech therapist, Care One Home Health, Modesto
Topics: Communication and swallowing issues with PD
RSVP?: No.

Walnut Creek (Mt. Diablo)
Saturday, 2/17, 9am-noon (speakers 10:45am-11:45am)
Guest Speakers: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park, and Stephanie Fiola, BSN, nurse educator, AbbVie
Topic: Duopa – treatment for advanced Parkinson’s
RSVP?: No.

Lincoln
Tuesday, 2/20, 10-11am
Guest Speaker: Ginger McMurchie, Elder Care Management of Northern California, Granite Bay
RSVP?: No.

Modesto
Wednesday, 2/21, 1:30-3:30pm
Guest Speaker: Representative from Rock Steady Boxing, Modesto
RSVP?: No.

Mill Valley (Marin County)
Friday, 2/23, 1-3pm (speaker 1-2pm)
Guest Speaker: Aura Oslapas, StrivePD
Topic: Voice and mobile app to make life easier with PD
RSVP?: No.

Fremont
Monday, 2/26, 7-9:30pm
Guest Speaker: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic: PD – more than motor symptoms
RSVP?: No.

Five tools for mindfulness for caregivers (The Caregiver Space)

Today’s blog post from “The Caregiver Space” (thecaregiverspace.org) gives a short description of five tools for mindfulness for caregivers. The online apps are:

1- Curable: for chronic pain; curablehealth.com

2- Universal Breathing: based on the ancient yogic discipline; saagara.com/apps/breathing/universal-breathing-pranayama

3- Journey: journaling; 2appstudio.com/journey

4- WildMind: 200 guided meditation sessions based on ancient Buddhist practices; wildmind.org

5- Aura: set aside three minutes daily for guided meditation; aurahealth.io

The post also make some interesting points about mindfulness being different from meditation, and mindfulness not being “selfish.”

Robin

—————————

thecaregiverspace.org/5-tools-for-mindfulness-for-caregivers/

5 Tools for Mindfulness for Caregivers
by Maricel Tabalba (Guest Author)
The Caregiver Space
Jan 31, 2018

Recent estimates show that 80 percent of caregivers in the US are not healthcare professionals. Given the both physically and emotionally taxing nature of the work, plus the fact that most caregivers aren’t professionally trained, it should come as no surprise that many caregivers suffer from anxiety. In fact, so many caregivers complain of anxiety symptoms that “caregiver stress” is now a medically recognized term.

The first thing every caregiver should understand is that it’s just as important to take care of themselves as it is to take care of their patients. One free, easy, and effective way caregivers can better cope with the stresses of work is to schedule a few moments of mindfulness practice every day.

Mindfulness: It’s Not Just Meditation
Before we even suggest how to practice mindfulness, we should clear up a common misconception about mindfulness. When people hear the word “mindfulness” they often assume it’s synonymous with meditation. But while meditation can certainly be considered a mindfulness practice, mindfulness encompasses a wide variety of exercises designed to help people better manage stress. Besides meditation, a few common mindfulness practices include journaling, music therapy, yoga, talk therapy, and Tai Chi. As long as the technique helps bring you into the present moment, it could be considered a form of mindfulness.

Daily mindfulness practice helps caregivers perform their duties without becoming overburdened with stress. Luckily, there are tons of convenient apps available to help caregivers find their inner Zen through their smartphone. Below, we’ll go over five excellent apps all caregivers can use to start their journey towards inner calm.

Curable
People who struggle with chronic pain conditions must download the Curable app. Created by a team of people who overcame their own challenges with with pain, Curable uses the latest research in mindbody healing to help users overcome conditions such as low back pain, migraine headaches, and irritable bowel syndrome.

After downloading Curable onto your Apple or Android product, you get access to an artificial intelligent “pain coach” named Clara. Users just have to type in their pain symptoms and Clara will put together a personalized mindfulness practice. Simply follow Clara’s lesson plans everyday and you may start to feel better within around a month.

Curable’s developers say 70 percent of users experience some relief from their pain symptoms within 30 days of first starting to use the app. Even if you do not suffer from chronic pain, caregivers can still benefit from Curable’s exercises and can practice a more mindful way of living.

Universal Breathing
For those who aren’t aware, pranayama is the ancient yogic discipline of controlling the breath to achieve a greater state mental clarity. Many yogis use pranayama exercises to help them enter deeper states of meditation and quickly silence mental chatter. Thanks to the Universal Breathing app, now you don’t need to travel to an ashram to learn basic pranayama exercises to help you through your day. People who use the Universal Breathing app have access to tons of information on pranayama technique, breathing courses, guided sessions, and a progress journal. Find out what exercises work best for you and read about pranayama theory on this fascinating app.

Today, the Universal Breathing app is available for free in the App Store, Google Play, and on the Nook.

Journey
If you’re not into guided meditations or breathing exercises, perhaps you’d prefer a mindfulness practice like journaling. Before you put down journaling as “not real mindfulness,” you should know that many scientific studies prove that journaling helps boost the immune system and relieves depression.

Probably the easiest way to get into the journaling habit in our digital age is to download the Journey app. The Journey app allows you to write and store your journal entries in the Cloud and add photos from your albums. You can even share moments with friends and family across multiple platforms. The Journey app is available on Apple, Android, and Microsoft products.

WildMind Buddhist Meditation
WildMind’s Bodhi app has more than 200 guided meditation sessions based on ancient Buddhist practices. Although most of these meditations are indebted to Buddhist teachings, you don’t have to know anything about Buddhist traditions to get a great deal out of this app. The two main practices encouraged in these meditation sessions include basic breath meditation and loving-kindness meditation (also known as metta practice). Most of these meditation sessions last between 15 to 20 minutes. WildMind’s app also includes instructions on practicing walking meditation and tips to improve your meditation posture.

Aura
Aura is an award-winning mindfulness app tailored for people who live fast-paced lifestyles. All the Aura app asks is that you set aside three minutes every day for a guided meditation. That’s it. If you feel like it, you could add a few of Aura’s “micro-meditations” throughout your day, each of which lasts around 30 seconds. There are also relaxing forest soundscapes on Aura’s app to help you get through particularly stressful days.

All of your meditations are tailored to your specific needs by AI technology and Aura keeps tabs on your mood so you can see whether or not certain meditations are working for you. Aura is available on Android and iOS devices.

Mindfulness Practice: Every Caregiver’s First Priority
Caregivers have a habit of neglecting their own wellbeing for their patients’ sakes. Some caregivers even believe taking a few minutes out of the day to practice mindfulness is “selfish.” Nothing could be further from the truth. In fact, taking a few minutes to practice mindfulness everyday will improve the quality of care you can give to your patient. It should be mandatory that all caregivers practice some form of mindfulness today, especially with all of these great apps literally at our fingertips.

Maricel Tabalba is a freelance writer working with Curable Health, who is interested in writing about natural and holistic remedies, smart gadgets, emerging tech trends, and environmentally friendly advice. She earned her Bachelor of Arts in English with a minor in Communication from the University of Illinois at Chicago.