Category Archives: Dementia

Dementia Care: Filling the Role of Spouse and Caregiver


The Purple Jacket is pleased to welcome back guest writer, Samantha Stein from ALTCP.org. 

Dementia care is difficult because of all the changes the care recipient goes through. No amount of money or precaution can fully prepare families for when dementia strikes a loved one, and this reality is even more devastating for many couples. To illustrate, here is a video we came across online of Bob Treanor and his wife, Ruth. Bob provides valuable insight on what it is like for individuals to become dementia caregivers to their spouses.

https://www.youtube.com/watch?v=OEcgUNwwFto

Dementia affects the lives of many individuals. And as the video shows, it certainly does not only take its toll on the diagnosed. It also alters the lives of the people closest to the patient.

For this week’s post, let us discuss all of the intricacies of dementia and what caregivers go through for their family members and loved ones going through it.

Dementia Explained

Before anything else, let us clarify one common misconception: dementia is not a disease. It is the term used to refer to the severe decline in memory or thinking ability that it hinders a person from accomplishing everyday tasks. These signs and symptoms vary, but the most common ones are as follows:

  • Memory Loss
  • Difficulty in language and communication
  • Change in Attention Span
  • Reasoning and Judgment
  • Visual Perception
  • Behavioral Changes

Another misconception that people have is that dementia and Alzheimer’s disease are the same. However, the latter is, in fact, a type of dementia. The other types are listed below:

  • Vascular dementia
  • Dementia with Lewy bodies
  • Mixed dementia
  • Frontotemporal dementia
  • Creutzfeldt-Jakob disease
  • Normal pressure hydrocephalus
  • Huntington’s disease
  • Wernicke-Karsakoff Syndrome

Dementia Caregiving Statistics

While it may depend on the type of care that they provide, caregivers often put themselves at a great risk by taking on the responsibility of supporting their loved ones. We have all heard the stories about it; co-workers barely meeting deadlines because of caregiving duties, people have even left their jobs to fulfill the role full-time, or neighbors leaving their homes to move in with loved ones. It is not an easy feat and it requires more dedication than anyone can ever really understand.

Dementia caregivers are no stranger to this circumstance. In a study released by the Alzheimer’s Association, more than 15 million family members and friends have provided 18.1 billion hours of unpaid care to loved ones with Alzheimer’s and other dementia in 2015. The economic value of all this was worth over $221 billion. Moreover, 38-percent of dementia caregivers have shared that they have been doing the work for six years or more. When a person takes on a responsibility this big and it lasts this long, it is bound to have negative effects on his or her well-being.

As cited in the same study, caregivers to dementia care recipients are 3.5 times more likely to say that the greatest consequence of the task is that it creates or aggravates their own health problems. Inevitably, these caregivers do not get to walk away from the experience unscathed. Physically, emotionally, financially, socially, or mentally, dementia caregivers will have to face some type of health problem during or after the care.

Lastly, and perhaps the most devastating discovery is that people caring for their loved ones hospitalized for dementia are more likely to pass away the following year, even after accounting for the spousal caregiver’s age.

Gender Differences in Caregiving to a Spouse with Dementia

Traditionally, caregiving is perceived by the majority as a woman’s task. This may be because of her nurturing nature or because of the traditional gender roles in society. However, the perception and behavior of society is rapidly changing. As seen in Bob and Ruth’s story, men are also becoming increasingly open to caregiving.

Gender Differences in Caregiving among Family – Caregivers of People with Mental Illness, a study published last year, attributes the growing change to longer life spans, more women taking on jobs outside the home, and smaller families. Similar to the reasons that women have in assuming the role of caregivers, men are driven to assume the responsibility by a sense of affection, commitment, and family responsibility.

Unfortunately, research that focuses on this subject is still quite limited. Most studies still pay little attention to male caregivers and maintain focus their female counterparts.

couple(Photo Credit: Pixabay)

Redefining Marriage

Marriages take the biggest hit when it comes to dementia. Perhaps, this is might be one of the biggest tests to “in sickness and in health.” Imagine slowly watching partner forget about a life that you had built together over the decades. Not only that, imagine feeling angry at the whole situation and wishing it was all over, then immediately being consumed by the overwhelming guilt of even entertaining the thought. This is the reality that many dementia caregivers face on a regular basis.

Physically present, but psychologically absent—this is how Pauline Boss Ph.D. describes how spouses can change when dementia takes over in her NextAvenue article entitled, For Caregivers of Spouse with Dementia, a Redefinition of Marriage. For many spousal caregivers, dementia has turned their married lives into an abstract relationship that feels like “living with a stranger” or “loving half a person.” It is no longer about building and maintaining a perfect relationship. As Boss puts it, it becomes pushing to make the relationship good enough.

We get a further look into this through John R. Smith’s How to Care for a Spouse with Early-Onset Alzheimer’s. Just in his early 40s, he has become the primary caregiver of his wife whose health condition is so advanced that she has lost the ability to brush her teeth, bathe, or even remember his name.

One striking point in his account is how spousal caregivers will feel a unique kind of isolation. When your spouse could barely remember your name, how can he or she truly give consent to intimacy? Despite it being a taboo in some social circles, sex is one of the most basic needs of a human being. Dementia can and will take that away in marriages because, as Smith’s therapist puts it, it will start to feel like date rape.

The Importance of Self-Care

In the chaos, success, and emotional turmoil that come with caregiving for a spouse with dementia, caregivers can easily neglect their own lives. In their minds, their spouse’s needs become the primary concern. However, prioritizing their own care concerns and needs is and will always be important, and they should not feel guilty for it.

Spousal caregivers, especially those handling cases as consuming as dementia in their own homes, can feel as if anything that takes their time and attention away from their spouse is not worth the thought. In some cases, taking a break could even feel as if their being selfish and spending the money on anything that they want feels like a substantial waste of limited resources.

But taking care of themselves does matter immensely. In Smith’s case, he stopped eating properly because he dedicated most of his time and their resources caring for his wife. He ended up losing weight, and every time his wife would stumble and fall, he would have trouble picking her up.

Your Concerns and Emotions are Valid

It has been said countless times before, but let’s reiterate: the quality of your care depends on how much you care for yourself. To the caregiver reading this, your health matter just as much as your spouse’s, so take the time to safeguard it.

As stated above, most caregivers learn later on that their own health concerns are aggravated by the responsibility of caring for their spouses. Stop, and reevaluate if you have enough saved away for that. The different types of long term care facilities may vary in prices, but none of them come cheap. Bear in mind that preparing yourself for the long term care costs you might have to face is all right.

Also, taking the time to continue doing what you love to do is not just acceptable but necessary. Maintaining good health by eating right (even if it is a little more expensive) and exercising can help you handle caregiving so much easier. Keeping your mind and your body in shape will make you a more effective caregiver. A strong body will help you handle the physical demands of caregiving, whether it is heavy lifting or working longer hours. A sound mind will help you handle the emotional roller coaster that come with it.

Lastly, but just as vital, remember that it is okay to ask for help. You are human. Exhaustion and frustration will come, and there will be times when you feel like you are filled to the brim. When this happens, know that those emotions are valid and that they do not make you a horrible spouse. Just ask for help from the people you trust the most. It may be from your children, other family members or even your neighbors. If budget permits it, the help might even come from a hired extra pair of hands.

Author Bio:

Samantha Stein is an online content manager for ALTCP.org. Her works focus on key information on long term care insurance, finance, elder care, and retirement. In line with the organization’s goal, Samantha creates content that helps raise awareness on the importance of having a comprehensive long-term care insurance plan not just for the good of the individual but for the safety of the entire family.

 

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Combating Dementia with Improv


The Highest Results Of Education Is Tolerance: Helen Keller

Dementia and Improv; two words you don’t normally associate together.  That did not hold

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Cathy Braxton & Tami Neumann from The Silver Dawn Training Institute 

back Tami Newman and Cathy Braxton from the Silver Dawn Training Institute from developing a cutting edge communication tool using Improv to help all of us learn how to community better with someone who is suffering from Dementia.

Dementia Raw is “shining a spotlight on unique ways to communicate with people affected by dementia.  It’s unscripted, it’s unconventional and its unapologetic training that equips you to handle everyday challenges as a caregiver.”

It goes without saying that communication is the key to healthy relationships.  Learning how to communicate with a family member, friend or client who has dementia is equally as important. Silver Dawn Logo_PRThrough their Silver Dawn Training Institute, Tami and Cathy have created
an on-line and in-person certification program that will help professional caregivers and family caregivers alike, learn how to better communicate with those affected by dementia.  To learn more how you can become a Certified Dementia Communication Specialist  simply click here! 

Don’t just take it from me; listen in to this episode of “Healing Ties”  and learn how Tami and Cathy are creating “Healing Ties” all around us.  “Healing Ties” is a part of the Whole Care Network.

 

 

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5 Tips for Talking With a Person Who Has Alzheimer’s


“Adopt the pace of nature: her secret is patience.” Ralph Waldo Emerson

Today we welcome award winning author Marie Marley to The Purple Jacket.

Yesterday afternoon I walked into Mary’s spacious room. Mary is a woman who has few visitors and who I’ve volunteered to spend a little time with every week. I greeted her, complimented her on her beautiful turquoise sweater and shook her hand.

Then I sat down at her little table that was overflowing with books, photographs, the newspaper and other items she wants to keep close at hand. I started off by picking up a small framed photo of Mary with her husband and three children — two sons and a daughter.

“Tell me about your daughter,” I said, using an open-ended question because they have no right or wrong answers. That’s a tip I picked up from The Best Friends Approach to Alzheimer’s Care by Virginia Bell and David Troxell.

“Oh, her name is Connie,” she told me. “She has four children — two boys and two girls.”

She continued by giving me several details about Connie and her family. I then picked up a photograph of Mary and her twin sister, Bernice, and she told me about how they took piano lessons together when they were children. After a few minutes, I asked her if her daughter ever played a musical instrument.

“I don’t have a daughter,” she said matter-of-factly.

“Oh,” I countered, picking up the family photo again and holding it out for her to see. “You just told me you have a daughter. Here she is.”

Mary’s face fell and she said very quietly, “I guess I do have a daughter.”

I immediately felt sorry for her embarrassment and was disgusted with myself for having pointed out her mistake. I realized I’d just broken one of the cardinal rules for interacting with a person who has dementia. I’d just read it in The Best Friend’s Approach that very morning: “Let the person save face.”

When relating to a person with Alzheimer’s there are many guidelines to follow. I’m going to discuss five basic ones here: 1) Don’t tell them they are wrong about something, 2) Don’t argue with them, 3) Don’t ask if they remember something, 4) Don’t remind them that their spouse, parent or other loved one is dead and 5) Don’t bring up topics that may upset them.

Don’t Tell Them They’re Wrong About Something: To let the person save face, it’s best not to contradict or correct them if they say something wrong. There’s usually no good reason to do that. If they’re alert enough, they’ll realize they made a mistake and feel bad about it. Even if they don’t understand their error, correcting them may embarrass or otherwise be unpleasant for them.

Don’t Argue With the Person: It’s never a good idea to argue with a person who has dementia. First of all, you can’t win. And second, it will probably upset them or even make them angry. I learned a long time ago, when caring for my beloved Romanian soul mate, Ed, the best thing to do is simply change the subject — preferably to something pleasant that will immediately catch their attention.

Don’t Ask if They Remember Something: When talking with a person who has Alzheimer’s, it’s so tempting to ask them if they remember some person or event. “What did you have for lunch?” “What did you do this morning?” “Do you remember that we had candy bars when I visited last week?” “This is David. Do you remember him?” Of course they may not remember. Otherwise, they wouldn’t have a diagnosis of dementia. It could embarrass or frustrate them if they don’t remember. It’s better to say, “I remember that we had candy the last time I was here. It was delicious.”

Don’t Remind the Person that a Loved One Is Dead: It’s not uncommon for people with dementia to believe their deceased spouse, parent or other loved one is still alive. They may be confused or feel hurt that the person doesn’t come to visit. If you inform them that the person is dead, they might not believe it and become angry with you. If they do believe you, they’ll probably be very upset by the news. What’s more, they’re likely to soon forget what you said and go back to believing their loved one is still alive. An exception to this guideline is if they ask you if the person is gone. Then it’s wise to give them an honest answer, even if they will soon forget it, and then go on to some other topic.

Don’t Bring up Other Topics That May Upset Them: There’s no reason to bring up topics you know may upset your loved one. If you don’t see eye-to eye on politics, for example, don’t even bring it up. It may just start an argument, which goes against the second guideline above. You won’t prevail and it’s just likely to cause them anger and/or frustration.

So there you go. A few guidelines for visiting. I hope these will be helpful to you in visiting your loved one and enriching the time you have together.

unnamedMarie Marley is the award-winning author of Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy and co-author (with Daniel C. Potts, MD, FAAN) of Finding Joy in Alzheimer’s: New Hope for Caregivers. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s caregivers.

 

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Is There A Connection Between Dementia and Dirty Air?


Today we welcome a contribution from freelance writer  Jess Walters to “The Purple Jacket”

Why Caregivers Should Monitor Air Quality

Caring for a loved one is a heavy burden, and you’ll want to do the best you can for them. Some of the duties you will perform as a carer are quite typical, such as feeding, shopping and cleaning. However, there are other less obvious things to consider when looking after someone. A topic that isn’t usually at the forefront of people’s minds is the quality of air.

Scientists believe that there may be a link between polluted air which is high in magnetite, and dementia. People with dementia have elevated levels of magnetite in their brains. Therefore, it is vital that the air is clean for yourself and your loved one. You can do this by using a portable air purifier, and by purchasing high quality filters for your HVAC, which will screen smaller particles in the air.

A silent buildup of tiny magnets in the brain sounds like science fiction, but researchers say it’s reality for adults who live in cities, thanks to air pollution. Now, they’re trying to find out if high levels of magnetite, a particle found in dirty air, can cause Alzheimer’s. They’re concerned because Alzheimer’s patients also have lots of magnetite in their brains. It’s not yet clear if elevated brain magnetite levels are a cause or an effect of dementia, but magnetite is hardly the only air pollutant, and there’s no question that cleaner air is better for your health. Here are some tips for clearing the air for yourself and your parents.

Keep an eye on local air quality

Local industries, pollen, dust storms, and wildfires can create health hazards for seniors, especially those with allergies, asthma, and lung diseases. Most local weather forecasts now include information on daily air quality, including the types and amounts of pollutants such as ozone and dust. You can also visit the Environmental Protection Agency’s real-time national air quality map at AirNow, enter your zip code or and see local air quality and tomorrow’s forecast.

When the pollutants and pollen are high, it may be best to stay indoors or at least avoid exercising outdoors. You may be tempted to put on a mask and get on with outdoor activities despite the dirty air, but health experts warn that thick, tight-fitting masks that can filter out pollution particles may also make it harder to breathe. Read the rest of this guide here.

“Jess Walter  is a freelance writer and mother. She loves the freedom that comes with freelance life and the additional time it means she gets to spend with her family and pets.” Jess Walter <jesswalterwriter@gmail.com>

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Love In The Land Of Dementia


Love is the only force capable of transforming an enemy into a friend.  Martin Luther King, Jr.

I will be the first one to admit that my caregiving journey did not include the special trails and tribulations when caring for someone who has dementia or Alzheimer’s.   For many families, a diagnosis of dementia is an ending. For Deborah Shouse, it was a beginning, “My mother taught me how to celebrate and appreciate what we have right now.” Through her mother’s dementia, Deborah discovered compassion, deepening love, and increased connection with her mother and her family.

Deborah Shouse is an author and dementia advocate. Deborah knows first hand that finding the connection with a love one afflicted with dementia is a challenge millions of people face. Too often, people living with dementia are entertained instead of engaged.  In this episode of “Healing Ties” Deborah talks about the differences between Dementia and Alzheimer’s while sharing her love and passion for those who care for someone with this insidious diagnosis.

Listen in and learn how Deborah is creating “Healing Ties” all around us by finding love in the land of dementia.

2016-12-22-3Love in the Land of Dementia offers hope to family members, friends, and care partners of people who are living with memory loss. Strong, fluid organization and tender writing distinguish this purposeful and compelling read, which is filled with practical suggestions, compassionate support, and unexpected insights.   Visit Deborah on line at Dementia Journeys 

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Having a Dementia Friendly Holiday


Christmas is the day that holds all time together. Alexander Smith

The Holiday Season and can be both fun and stressful.  But how does a family approach the Holiday Season when caring for someone who has Dementia or Alzheimer?

2016-12-22-2Deborah Shouse is a dementia advocate and the author of Connecting in the Land of Dementia: Creative Activities to Explore Together .  Through her own personal experience of caring for her Mother, Deborah has a keen understanding of the importance of preparing for a dementia-friendly holiday  so that everyone can be safe and secure while enjoying the holidays.

Deborah offers some sage advice on how to choose holiday activities; explaining the needs of the person living with dementia to family and guest, creating a quite space available for down time while in the midst of the festivities.  My personal favorite is Deborah’s suggestion that a family member or friend take turns being around the family member with dementia in order to answer a quick question or to just make them feel comfortable a large gathering of people.

When memory loss is first detected in a loved one or friend, it can be troubling for the person affected, but also for the entire family and friends.   Too often, people living with dementia are entertained instead of engaged.  Connecting in the Land of Dementia shows us how to engage and connect with people who are living with memory loss and dementia.

On this version of  Healing Ties,  Deborah provides us with some timely tips to help caregivers and their caree’s have a dementia friendly holiday season.

Listen in and learn how Deborah Shouse is creating Healing Ties all around us!

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December 22, 2016 · 1:31 pm

Creating A Memory Cafe Directory


Try to learn something about everything and everything about something.  Thomas Huxley

The month of November is always an exciting time as we look ahead to Thanksgiving and the Holiday Season.   November is also significant for family caregivers as November is designated as National Family Caregivers month.  November is also designated as Alzheimer’s Disease Awareness Month.  Family Caregiving  and Alzheimer’s disease  go hand in hand, it is proper that they both share a month together.

Our caregiving journey did not include the insidious disease of Alzheimer or dementia. However thousands upon thousands of family caregivers care for a family member or friend  who struggle with memory loss.   The common denominator for all family caregivers is to find safe places where you and caree can enjoy life as much as a day in caregiving will allow.

As I have come to learn, those who suffer from memory loss often find it difficult to  go to loud and unfamiliar places.  We know isolation starts to occur when we feel there 2016-11-01-2is no viable option, rather, it’s just easier to stay home  than to do deal with the obstacles of the unknown.

But what if there was a safe place for those incurring memory loss and their caregivers?

KalendarKards is creating a Memory Cafe Directory where people can socialize, listen to music, play games and other activities. They can simply enjoy the company of those with these things in common.  A Memory Cafe is a safe and comfortable space and great place for individuals with Alzheimer’s or any of the dementia’s. But it’s not just for them, the memory café for their caregivers as well.

The Memory Cafe Directory was started by KalendarKards and is operated by KalendarKards, LLC .  Memory Cafe’s are not everywhere, but they are growing quickly.

On this episode of Healing Ties, Dave Wiederrich CEO and Co-Founder at KalendarKards provides us with a detailed description of the Memory Cafe Directory and how you can start one of your own.

 Listen in and learn how Dave Wiederrich and KalendarKards are creating Healing Ties all round us!

By creating a comprehensive national directory for Memory Cafe’s, KalendarKards believe they can help raise awareness of the value Memory Cafe’s bring to families.  I happen to agree!

 Join us in Chicago for the First National Caregiving Conference on December 2nd & 3rd.  Visit Caregiving.com for further details “

National Caregiving Conference (1)

Chris MacLellan is the host of Healing Ties Radio and the author of “What’s The Deal with Caregiving?”  ©WholeCareNetwork. 

 

 

 

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Dementia Patients at Home: Care Taker’s Guide


The Purple Jacket welcomes back guest blogger Andrea Bell 

Dementia Patients at Home: Care Taker’s Guide

According to the behaviorist perspective, the environment plays a key role in how people behave. The impact comes from the people as well the type of house or even inanimate objects that are placed there. Dementia is not a disease in which a patient can admit himself into a hospital and receive proper treatment. He has to live with it for the rest of his/her life. Since they cannot control the progression of the disease, what they can control is to choose the way they want to spend their remaining years. Home décor can have a significant impact on dementia patients who are receiving care at home. It is important to understand that their life has or is beginning to change drastically, so a change in surroundings to help them adapt better is necessary. Here are some absolutely easy home décor ideas especially for people with Dementia:

  1. Bedding and comfort

Every patient (Dementia or not) needs comfort. Bedding, chairs and sofas should all be soft and cozy enough for the patient to stay in. Discomfort can stress the patient very easily which can increase the adverse effects of the disease. Comfort is also provided through emotional support of the care taker, it is necessary to educate yourself about Dementia patients before taking care of them. Their mattresses should have a plastic covering as well as be fire retardant.

Here are some pages to get you started: How to properly deal with Dementia; Dementia nursing and caring tips.

  1. When Nature calls

Most patients with mild cognitive impairment or even normal physical weaknesses tend to wet their beds. It is absolutely essential to stay absolutely calm as it is already a pretty shameful moment for them. To avoid this, adult diapers and catheters are necessary. Other than this, easy to use bathroom fixtures and fittings are something that can provide the patients and their care takers both, some ease. Also, there are several kinds of bath chairs with all proper washing functions available which can be placed in the bathroom. Get them here.

  1. Reminders and forgetfulness

Dementia is probably the second name for forgetfulness. It can make the patient feel useless, as they at some point are not able to remember important pieces of information, or even the insignificant things like names of different foods or what day it is today. So to help them remember the house should be ‘reminder friendly’ in ways that the patient is instantly reminded of basic things. Sticky Notes always come in handy, even for everyday life. Post them everywhere, especially near the bedside or work areas with whatever information that you choose to remind them.

Large reminder boards can be placed on the wall, or the fridge, which can keep track of things like what time do they have to take their medicine, or how many times or pills do they have to take etc. If it is someone’s special day, like a birthday or a wedding anniversary, it can be easily posted on the reminder board in bold letters, which can allow the patient to be reminded of it every time they look at it or walk by it. You can easily by them from this store.

Bold analogue wall clocks can also be a good way for the patients to keep track of time. Large clocks with bold calendars are also available especially for dementia patients. Get them here.

  1. Way finding and wandering

A smart way to stop the patient from wandering is to plant or paste arrows inside the house, or in the backyard to allow the patient to recognize where he has to go. As soon as he begins to wander, the arrows will prompt him with the path that needs to be followed.

  1. Color selection for the eyes

With Dementia in old age, many patients may develop blindness or cataract eventually leading lives with blurry vision. Usage of bright and bold colors in things that need to be highlighted such as their pill boxes or their food containers can help them locate and even remember it easily. On the other hand, for areas such as those meant for sleeping and relaxing, the colors should be light and pastel in order to provide a soothing effect for the patient. These bold and soothing colors can be integrated into walls, curtains, bed sheets as well as the carpets on the floor.

  1. Organization to reduce confusion

Old age can cause a lot of confusion for the patient, especially if it is accompanied by Dementia. To reduce daily life confusion as much as possible, you can color coordinate their wardrobes, or pre pick out their clothes that they have to wear daily. Arrange their personal belongings or toiletries in a way that they are clear and visible right in front.

Andrea Bell is  freelance writer by day and sports fan by night.  Andrea writes about tech education and health related issues (but not at the same time). Live simply, give generously, watch football and a technology lover. Find Andrea  on twitter @IM_AndreaBell.

(All content and links submitted in this post are written and submitted by Andrea Bell.)

 

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Dementia and Rummage Bags: Yes!


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Join me on Tuesday August 13th at 1:00 pm on ‘Be A Healthy Caregiver’ on Blog Talk Radio, as we visit Seth Gillman and  Kaitlyn Henderson from Passages Hospice.  Passages Hospice has developed this wonderful program simply called ‘Rummage Bags’ to help dementia patients (and their caregivers) cope!    Whether you are a man or a woman, we’ve all had the experience of rummaging through a bag, a box, a pocket, a drawer, looking for the elusive item that just seems to be out of our reach. Yet when we find what we are looking for, there is that moment of elation!  To listen to our show live, simply click here! 

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Seth Gillman

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Kaitlyn Henderson

We will have a delightful conversation on Tuesday about this terrific program, while chatting about the great work Passages Hospice does in many communities throughout the Midwest. We will also have some terrific tips for Caregivers who are caring for a loved one with dementia.   Through our conversation with Seth and Kaitlyn, we will all learn how to ‘Be A Healthy Caregiver!’ 

To listen to our show live on Tuesday at 1:00 pm (est) click here!

Visit Passages Hospice online by clicking here! 

Can’t listen live…NO Worries!

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All our epidsoes of ‘Be A Healthy Caregiver’ are archived for your listening convenience by clicking here!

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