Eleven things “they don’t tell you about dementia” (Dementia Journey)

When Laurie Scherrer was diagnosed with early onset Alzheimer’s and frontotemporal dementia, she was told several things by doctors, including advice that she should get her affairs in order.  She writes about the eleven things she wished the doctors had said, including the idea that she could reduce confusion and agitation by observing triggers.

dementiajourney.org/2018/07/10/5589/

Man found joy in completing puzzles that were family photos

This article from last year is about twin daughters who discovered a company that created puzzles from family photographs, and that their father with Lewy body dementia (LBD) really enjoyed putting together these puzzles.

This activity might be of interest to more than those with dementia.

www.brainandlife.org/the-magazine/article/app/13/1/23/puzzle-power-as-lewy-body-dementia-narrowed-their-fathers-world

Compassion fatigue in caregiving and ways to take care of yourself

Though this article has “dementia caregiving” in the title, the issue of “compassion fatigue” applies to all caregivers.  In caregiving, the “demands are many” and there is not enough time to get everything done.  Any many times the person receiving care resents being helped or may not express appreciation.

The author believes caregivers can overcome compassion fatigue by caring for themselves.  She suggests several ways to care for yourself:

* don’t take outbursts personally
* be kind to yourself
* share your feelings
* talk to someone
* find support
* validate your feelings
* grieve
* have fun

This is a blog post on the Huffington Post Canada website so some of the words having British English spellings.

Find the post here:

www.huffingtonpost.ca/gail-elliot/compassion-fatigue-caregiving_a_23389637/

Compassion Fatigue Is A Reality Of Dementia Caregiving
If you are connected to the world of dementia care, the demands are many. In your quest to help others, are you taking time to care for yourself?
by Gail Elliot
HuffPost
03/20/2018 

Robin

 

Apathy – 3 components, case study, vs. depression, and strategies

Apathy is a common symptom in frontotemporal degeneration (including frontotemporal dementia, progressive supranuclear palsy, corticobasal degeneration, etc) as well as other disorders such as Parkinson’s disease and Lewy body dementia.  In my experience working with caregivers of these neurological diseases for nearly 15 years, I can say that apathy is one of the most challenging symptoms for caregivers and families.

The Association for Frontotemporal Degeneration (AFTD, theaftd.org) has just published its winter issue of “Partners in FTD Care.” The newsletter, for healthcare professionals, presents an overview of the three components of apathy — initiation, planning, and motivation. A case study is shared of Linda and her caregiver husband Kevin. There is a discussion about what distinguishes apathy from depression.

Additionally, there are lots of strategies provided to manage apathy. And two views of apathy are shared — one from a person diagnosed with frontotemporal dementia and another from an FTD caregiver.

I’ve copied a few excerpts below but the entire newsletter is worth checking out, if you are coping with apathy.

Robin

———-

https://www.theaftd.org/wp-content/uploads/2018/03/PinFTDcare_Newsletter_Winter_2018.pdf

Excerpts from
Partners in FTD Care
WINTER 2018
Association for Frontotemporal Degeneration

Components of Apathy
Three distinct components of goal-directed behavior are initiation, planning, and motivation. Each is supported by a distinct region of the frontal lobe. Apathy may emerge where there is dysfunction of any one of these components; understanding
them may help care providers and families to develop interventions tailored to an individual’s particular needs.

What distinguished her apathy from depression?
Linda’s family doctor ascribed her loss of interest in activities and relationships to depression, despite Linda doing well on the Mini-Mental Status Examination and not presenting as sad or concerned about the changes in her life. Antidepressants did not change her symptoms. She struggled throughout a psychiatrist’s evaluation of her planning, working memory, verbal fluency, and mental flexibility. Her history and executive-function impairment prompted the psychiatrist to order an MRI to investigate further. Prominent atrophy in Linda’s frontal lobe indicated the apathy
was due to degenerative disease rather than depression, and the doctor diagnosed FTD.

How did Linda’s husband cope with her growing lack of motivation and activity?
Kevin found himself frequently overwhelmed and angry that he had to plan and arrange all of Linda’s activities. He found himself thinking that she was sometimes being purposeful and defiant, even though he understood that her changing behavior was a result of FTD. He attended a caregiver support group led by an AFTD-affiliated facilitator where he could talk with others facing similar challenges. Group members suggested structuring her daily activities, and encouraged him to simplify the steps. When his children started to offer advice, Kevin struggled with guilt; he wondered whether he was doing enough for Linda. His doctor suggested he see a psychologist to help cope with his emotions and the stress of caregiving. This helped him continue to manage Linda’s care while acknowledging his own need for support and assistance.

Apathy
Apathy is among the most challenging symptoms for family and professional caregivers to manage. Effective interventions are individually tailored, rely on environmental strategies, and are delivered with understanding and patience.

Support Positive Approaches
• Reframe apathy as brain-based rather than the result of stubbornness or defiance.
• Develop individualized activities based on needs and interests that motivate and direct the person: spiritual, emotional, physical, nutritional, intellectual, and social. Follow the schedule consistently and adapt the level of difficulty of activities
as abilities change.
• Check your emotions continually and try to maintain a positive tone. People with FTD may have difficulty understanding speech but understand tone of voice and non-verbal communication. Anger and annoyance impede engagement and task
performance.
• Practice patience.
• Plan extra time for activities.
• Remember, you cannot change the person with FTD. Concentrate on modifying the environment and the intervention.
• Provide emotional support for family caregivers struggling to engage a loved one. Many feel anger over apathetic behavior, or feel they “aren’t doing enough” for the person with FTD, which adds to caregiver stress.

 

Five Tips for Improving a Difficult Caregiving Day – Webinar on Wed 2/28, 11am

Family Caregiver Alliance (caregiver.org) is hosting a webinar next Wednesday, 2/28, at 11am (CA time). The title is “Five tips for improving a difficult caregiving day.”  Though the title is about caregiving generally, the description talks about dementia caregiving. Hopefully one of our volunteers can listen in and take notes. If you attend, please shre what you learned! Details are below.

———-

Webinar Topic: Five Tips for Improving a Difficult Caregiving Day
When: Wednesday, February 28, 11 a.m. to 12 noon (PT)
Host: Family Caregiver Alliance (caregiver.org)
Cost: No Charge

Register here: register.gotowebinar.com/register/481692034697798145

Description: Caregiving can be a roller coaster: Some days you’re enjoying the ride and some days you’re holding on for dear life. It can be unpredictable and downright difficult! This webinar will provide you with five tips to help your day be a little less stressful. There will be an extended time for questions and answers about dementia caregiving — send your questions in with your registration!

Objectives:
* Review common changes experienced by a person living with dementia
* Discuss the effects of caregiving on caregiver health
* Learn five practical tips

Speaker: Lindsey Vajpeyi, BA, ADC/MC
Lindsey Vajpeyi has earned degrees in sociology and gender studies, holds an Activity Director Certification with a Specialization in Memory Care, has an Alzheimer’s Association essentiALZ® Plus Dementia Advanced Care Certification, and was previously a Certified Master Trainer for the Best Friends™ Approach to Alzheimer’s Care. She has experience in activities and wellness in long-term care, as well as in programs and services at a large non-profit. Lindsey’s entire career has been dedicated to working with persons living with dementia and their caregivers, with a focus on improving quality of life for all affected by dementia. Lindsey is currently the Director of Education and Outreach at Insight Memory Care Center in Fairfax, Virginia.

Questions? Contact Calvin Hu, Family Caregiver Alliance, [email protected], (415) 434-3388

 

“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.

“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])
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.

 

“Changing The Way We Look At Dementia” (KHN)

Judith Graham writes a “Navigating Aging” column for Kaiser Health News (khn.org). Many of her columns are worth reading, like a recent one on changing the way we look at dementia. The article is about an effort by Dementia Friends to change the way people talk about dementia as that “can make a big difference in people’s lives.” Another person says: “It’s about increasing awareness and empathy so that if you encounter someone in the community who needs some help, you have some basic skills.”

Here’s one story from the article:

“Bob Savage, an 86-year-old diagnosed two years ago with Alzheimer’s disease, became a Dementia Friend last year and now speaks to groups in Connecticut that are promoting the program. Some of what he tells them: ‘As soon as people learn you have Alzheimer’s, you’re stigmatized. People treat you different, like you don’t understand, and that’s very upsetting.’ Even if memory is lost, intuition and emotional understanding remain intact, Savage explained. What he and other people with dementia want most is ’emotional connection — that feeling of love that we had, that we may have lost’ when a diagnosis was delivered and a sense of being a burden to other people descended.”

You can get more info about the US effort called Dementia Friends USA from their website, dementiafriendsusa.org.

The full article is copied below.

Robin

——————————–

khn.org/news/changing-the-way-we-look-at-dementia/

Navigating Aging
Changing The Way We Look At Dementia
By Judith Graham
Kaiser Health News
February 8, 2018

In November, six people with Alzheimer’s disease and related types of cognitive impairment stood before an audience of 100 in North Haven, Conn.

One by one, they talked about what it was like to live with dementia in deeply personal terms.

Before the presentation, audience members were asked to write down five words they associated with dementia. Afterward, they were asked to do the same, this time reflecting on what they’d learned.

“Without exception, the words people used had changed — from ‘hopeless’ to ‘hope,’ from ‘depressed’ to ‘courageous,’ from ‘empty’ to ‘fulfilled,’” said Erica DeFrancesco, a clinical assistant professor of occupational therapy at Quinnipiac University who helped organize the event.

The session, followed by an hour-long discussion about dementia, is part of a new grass-roots movement in the U.S. aimed at educating people about Alzheimer’s disease and other forms of dementia, dispelling the painful stigma associated with these conditions and enhancing public understanding.

A centerpiece of that effort, known as “Dementia Friends,” began just over a year ago under the auspices of Dementia Friendly America, an effort spearheaded by 35 organizations across the country.

Currently, more than 13,200 people are registered as Dementia Friends in the U.S., and organizations in 14 states (Arizona, California, Connecticut, Hawaii, Illinois, Indiana, Maryland, Massachusetts, Michigan, Minnesota, Ohio, North Carolina, Virginia, Wyoming) are hosting events to sign up more.

Globally, almost 14 million people in 33 countries are involved in the movement, which originated in Japan.

To become a Dementia Friend, most people attend an hour-long presentation focused on several themes:

* Disease vs. typical aging. Alzheimer’s disease and other types of dementia are illnesses of the brain, not a natural consequence of aging.

* Scope of symptoms. Dementia triggers a wide array of symptoms, not just memory loss.

* Quality of life. People with dementia can live well, often for years.

* Maintaining identity and respect. People with dementia retain a sense of self and aren’t defined exclusively by this condition. (Testimonials by people with dementia are sometimes, but not always, included.)

“If we can change the way people look at dementia and talk about it, we can make a big difference in people’s lives,” said Philippa Tree, who spearheads a well-established Dementia Friends program in England and Wales, with about 2.3 million members, that has licensed its model to the U.S.

“It’s about increasing awareness and empathy so that if you encounter someone in the community who needs some help, you have some basic skills,” said Meredith Hanley, project lead for Dementia Friends USA.

William Anderson, chief of police for St. Cloud, Minn., went to a session of this kind late last year, with about 40 members of his department. One exercise — writing down all the steps involved in making a peanut butter and jelly sandwich — made an especially strong impression.

“I’d never thought about everything that goes into something that simple: taking the peanut butter and jelly out of the cabinet, unscrewing the tops, getting a knife, spreading the sides of the bread, putting the pieces on top of each other, cutting it down the middle,” Anderson said, adding that this was only a partial list.

“The point they were making was that folks with dementia might remember some of these steps but not others. At some point, they’ll get distracted or forget what they were doing and go on to something else. To me, that was eye-opening; it explained a lot.”

Now, Anderson thinks about “how we can make life more manageable for these folks, in simple ways.” An example: The St. Cloud Police Department’s building has a large vestibule, with two big glass doors. “If you have dementia, you’re going to walk into that vestibule and probably turn around in circles because the doors don’t have an identifier saying ‘police,’” he said, adding that introducing new signage is under consideration.

Committing to a concrete action — visiting or phoning a family member with Alzheimer’s regularly, watching out for a neighbor, volunteering with a community organization or trying to make public venues easier to navigate, for instance — is required to become a Dementia Friend, though sponsors don’t check if people follow through.

“This is a social action movement,” said Emily Farah-Miller, executive lead for ACT on Alzheimer’s, a statewide effort in Minnesota to create dementia-friendly communities and disseminate best practices regarding dementia in health care settings.

More than 10,000 U.S. Dementia Friends come from Minnesota, which began recruiting residents for the program two years ago, before it became a national initiative.

This year, Minnesota ACT on Alzheimer’s leaders are working with African-American, Hispanic, American Indian, West African and Hmong communities in their state to make culturally sensitive adaptations to their programs. And they’re piloting a modified version of Dementia Friends in several elementary schools “to create a dementia-friendly generation of youth,” Farah-Miller said.

Individuals can also earn a “Dementia Friends” designation by watching an introductory video on Dementia Friends’ USA website, as well as a second video about dealing with people with dementia in various settings such as restaurants, stores, banks, libraries, pharmacies, faith communities and public transportation.

If you encounter someone who seems confused and disoriented on a bus, train, taxi or subway, try to understand what that person might need, one of these videos advises. Speak slowly, using short, simple sentences and give the person adequate time to respond. Remain calm and reassuring and avoid arguing or embarrassing the person who may have forgotten where they’re going.

Bob Savage, an 86-year-old diagnosed two years ago with Alzheimer’s disease, became a Dementia Friend last year and now speaks to groups in Connecticut that are promoting the program.

Some of what he tells them: “As soon as people learn you have Alzheimer’s, you’re stigmatized. People treat you different, like you don’t understand, and that’s very upsetting.”

Even if memory is lost, intuition and emotional understanding remain intact, Savage explained.

What he and other people with dementia want most is “emotional connection — that feeling of love that we had, that we may have lost” when a diagnosis was delivered and a sense of being a burden to other people descended.

In 2016, Savage moved to a campus in Southington, Conn., where 133 people with dementia reside in assisted living or a skilled nursing facility. Stephani Shivers, chief operating officer of LiveWell (formerly the Alzheimer’s Resource Center), which owns the campus, is leading Connecticut’s Dementia Friends initiative.

“What I’ve seen is that barriers seem to dissolve for people who attend” information sessions, she said. “Whether it’s ‘I’m not sure what to say to someone with dementia’ or ‘I’m nervous about being with someone with dementia,’ the ‘I don’t know what to do’ falls away.

“It becomes me relating to you, a person with dementia, as another human being — a human being living with a cognitive disability, just like people living with physical disabilities.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation

“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

Advance Care Directive for Dementia (New York Times)

This recent New York Times (nytimes.com) article is about the idea that the typical advance care directive doesn’t say much about dementia.  A physician recently developed a dementia-specific advance directive, which you can find here:

* Advance Directive for Dementia, dementia-directive.org

Two other resources are referred to in the article —

* The Conversation Project, theconversationproject.org
* Prepare for Your Care, prepareforyourcare.org

(I have previously posted about those resources.)

Here’s a link to the full article:

www.nytimes.com/2018/01/19/health/dementia-advance-directive.html

One Day Your Mind May Fade. At Least You’ll Have a Plan.
by Paula Span
The New Old Age/The New York Times
Jan. 19, 2018
Robin