Dementia Inclusion Downeast Resources

Dementia Inclusion Downeast is a new partnership between Age-Friendly Sullivan and the Frenchman’s Bay Library, frenchmanbaylibrary, designed to bring you resources, activities, and educational information concerning brain health, for people living with dementia, care partners and leading dementia specialists.  Every day, we will post a new resource on our FaceBook page of the same name, Dementia Inclusion Downeast – please like, follow and share.

See below for sections on BOOKS, WEBSITES and VIDEOS

 

 

  AARP Dementia Resource Guide.  The AARP Dementia Resource Guide for Individuals and Families explains how to connect with programs and services that you and your family may find helpful, for example, to make your house safer for people living with dementia and to connect with people facing the same challenges.  You may click on the guide to read online or download your own reference copy.

  Diet Brain Health Guide 12.08.22  This resource and accompanying materials are a response to regular questions from the Parkinson’s community about what to eat to manage symptoms, potentially slow progression and even prevent disease. Many people and families living with Parkinson’s share that they are eager to learn practical ways to take control in their health journey, through healthier eating and otherwise.

  Cooking Our Way  An online Cookbook by and for people living with Dementia –  Cooking can be a way of preserving identity, memory and culture. Cooking can also pose some challenges and risks for people living with dementia, especially as their condition progresses.

Pathways To Well-Being With Dementia – an online manual of Help, Hope and Inspiration.. Essential information by people living with dementia, care partners and leading dementia specialists.  Ten people living with dementia and four care partners serve as your Guides throughout the manual to inform and inspire you. All are living proactively and productively. You will also gain insights from the many contributors who are dementia specialists or have expertise to share. The manual is not intended to be read from beginning to end but, rather, to be used as a resource and reference to be used as needed.  Developed by Dementia Action Alliance This extraordinary how-to manual provides essential information about living with dementia from 48 people living with dementia, care partners, and leading dementia specialists. The practical, helpful information, grounded in science, is presented in a user-friendly format.  You may download a FREE copy PDF at daanow.org/pathways

The following books are available at Frenchman’s Bay Library, 1776 US Highway 1, Sullivan

Old Friends, Age is nothing but a number, by Margaret Aitken, illustrated by Lenny Wen. Young children’s book.   Marjorie wants a friend who loves the same things she does: baking shows, knitting, and gardening. Someone like Granny.

When You Trap a Tiger, by Tae Keller (Ages 8-12) WINNER OF THE NEWBERY MEDAL. When Lily and her family move in with her sick grandmother, a magical tiger straight out of her halmoni’s Korean folktales arrives, prompting Lily to unravel a secret family history.

You Bring the Distant Near, by Metali Perkins (Young Adult);  2017 National Book Award Nominee.   This elegant young adult novel captures the immigrant experience for one Indian-American family with humor and heart. Told in alternating teen voices across three generations,

Lucy Clark Will Not Apologize, by Margo Rabb –  In this witty and whimsical story by award-winning author Margo Rabb, a sixteen-year-old girl is suspended from boarding school and sent to New York City, where she must take care of an unconventional woman entangled in a mystery.  

Every Last Cuckoo, by Kate Maloy (ALA Reading List Best Adult Fiction)  Sarah Lucas imagined the rest of her days would be spent living peacefully in her rural Vermont home in the steadfast company of her husband. But now, with Charles’s sudden passing, seventy-five-year-old Sarah is left inconsolably alone.

A Funny Kind of Paradise, by Jo Owens (2 copies)  At nearly 70, she feels she’s earned a peaceful retirement. But when a massive stroke leaves her voiceless, partially paralyzed and wholly reliant on the staff of an extended care facility, it seems her freedom is lost.  However, Francesca is still clear-headed and sharp, and she knows one thing: she wants to live.

Two Old Men and a Baby, or How Hendrik and Evert Get Themselves into a Jam, by Hendrick Groen Hendrik Groen and Evert Duiker, faithful friends in good and bad times, are well over seventy and their lives have quieted down. They see each other once a week to play chess, have a drink, and grab a bite to eat while reflecting on life.  But one day, their peace is rudely disturbed when Evert shows up on Hendrik’s doorstep with a surprise in the form of an unexpected little guest.

The Secret Diary of Hendrik Groen, 83-1/4 years old, by Hendrik Groen (2 copies @ FBL) Technically speaking, Hendrik Groen is….elderly. But at age 83 1/4, this feisty, indomitable curmudgeon has no plans to go out quietly. He begins writing an exposé: secretly recording the antics of day-to-day life in his retirement home, where he refuses to take himself, or his fellow “inmates,” too seriously.

Dementia-Friendly Communities, why we need them and how we can create them, by Susan H. McFadden, PhD  Creating dementia-friendly communities can give people with dementia the chance to continue meaningful lives with reciprocal personal relationships. Underpinning successful dementia-friendly communities is an awareness of people with dementia as active citizens and the importance of supporting engagement in community life.  

ReKindling Democracy – a Professional’s Guide to Working in Citizen Space, by Cormac Russell   At a time when public trust in institutions is at its lowest, expectations of those institutions to make people well, knowledgeable, and secure are rapidly increasing. Through just the right blend of storytelling, research, and original ideas, Russell argues the role of the professionals ought to be defined as that which happens after the important work of citizens is done.

Can’t we talk about something more PLEASANT?, by Roz Chast, a Memoir – a graphic memoir by the beloved New Yorker cartoonist that details her loving but exasperated relationship with her aging parents.  

The following books were donated by AARP Maine, and are available at Frenchman’s Bay Library, 1776 US Highway 1, Sullivan

Still Alice, by Lisa Genova,  is a compelling debut novel about a 50-year-old woman’s sudden descent into early onset Alzheimer’s disease, written by first-time author Lisa Genova, who holds a Ph. D in neuroscience from Harvard University. In turns heartbreaking, inspiring and terrifying, Still Alice captures in remarkable detail what’s it’s like to literally lose your mind…

Learning to Speak Alzheimers, Joanne Koenig Coste.  By Revolutionizing the way we perceive and live with Alzheimer’s, Joanne Koenig Coste offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality.

The Sandwich Generations – Guide to Eldercare, A practical, accessible, and comprehensive guide to the legal, financial, emotional and daily living challenges of caring for aging parents while raising your own family. 

Alone and Invisible No More, by physician Allan S. Teel, MD, describes how to overhaul our eldercare system. Based on his own efforts to create humane, affordable alternatives in Maine, Teel’s program harnesses both staff and volunteers to help people remain in their homes and communities. It offers assistance with everyday challenges, uses technology to keep older people connected to each other and their families, and stay safe.

Taking Care of Aging Family Members, by Wendy Lustbader & Nancy Hooyman.  Established in its first edition as the definitive guide for family members and professionals on all aspects of caring for the aged, this beautifully written and comprehensive handbook has been updated to include more issues of concern to the aged and those who care for them.

This Chair Rocks:  A Manifesto Against Ageism, by Ashton Applewhite.  In our youth obsessed culture, we’re bombarded by media images and messages about the despairs and declines of our later years.  It’s time to create a world of age equality by making discrimination on the basis of age as unacceptable as any other kind of bias. Whether you’re older or hoping to get there, this book will shake you by the shoulders, cheer you up, make you mad, and change the way you see the rest of your life. Age pride!

New Aging – the other talk – AARP. A one-of-a-kind practical guide to making the tough decisions parents and their adult children inevitably face.   The Other Talk helps you take control of your life so when the time comes, your kids can make decisions based on what you want. This groundbreaking guide provides the practical advice and inspiration you need to have open, honest discussions about subjects that can be difficult to talk about.

Educational Websites

There are some excellent online sources for information about dementia.  This section includes information about dementia from a variety of trusted sources.  These sources are a good place to start if you have questions about your condition and up-to-date research.

alz.org  Alzheimer’s Association

alzint.org  Alzheimer’s Disease International

alzheimer.ca Alzheimer Society of Canada

alzheimers.org.uk Alzheimer Society of UK (United Kingdom)

caregiver.org Family Caregiver Alliance – connecting caregivers & resources

dementiadaze Living with Dementia and Thriving BLOG

dfamerica.org Dementia Friendly America

lbda.org Lewy Body Dementia Association

lifelongmaine Lifelong Maine – Livable Communities

mayoclinic Alzheimer’s Mayo Clinic (info on Alzheimer’s)

nia.nih.gov/alzheimers National Institute on Aging – Alzheimer’s Disease & related dementias

theconversationproject The Conversation Project – Guides for challenging conversations

theaftd.org Association for Frontotemporal Degeneration

 

News and Updates

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VIDEO Saturday: Former Ballerina With Alzheimer's Performs 'Swan Lake' Dance | Super Emotional

Watch this super emotional & viral video of former #ballet dancer Marta Cinta González Saldaña, who had #Alzheimer's and died in 2019, reacting to Tchaikovsky's #Swan #Lake music.
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How to Embrace the Uniqueness of Dementia Journey
By Dr. Rocío Arias, MD, MS

Do you find yourself wondering why not all recommendations work for you? Or why some people experience things differently than you do?

These questions often arise when navigating the field of dementia. To answer them we need to understand that each person’s experience with dementia is as unique as their fingerprint. But why?

Not all types of dementia are the same.
Dementia is an umbrella term encompassing various neurodegenerative disorders, each with its distinct set of characteristics and symptoms.

While dementia is commonly associated with memory loss and cognitive decline, the way these symptoms manifest, and progress can vary greatly depending on the underlying cause.

For instance, Alzheimer disease typically presents with progressive memory loss, while vascular dementia may manifest with impairments in decision-making and executive function, due to reduced blood flow to the brain.

Similarly, Lewy body dementia may involve visual hallucinations and fluctuations in alertness, whereas frontotemporal dementia (FTD) often presents with changes in personality and behavior.

Recognizing these differences is crucial for accurate diagnosis and tailored treatment plans. Interventions that work for one type of dementia may not be effective for another.

Each person in this world is completely unique, with their own set of preferences, likes, dislikes, personality traits, needs, abilities, values, and life experiences.

This diversity extends to the journey with dementia. When it comes to providing care for those living with dementia, a one-size-fits-all approach simply doesn’t work.

For example, John may thrive in a bustling social environment, while Mary may prefer quiet, one-on-one interactions. Mary’s needs might differ significantly from John’s because they are two entirely unique individuals.

By recognizing and respecting who they’ve been in the past and who they are in the present, care partners can foster a sense of security and well-being.

Person-centered Dementia Care prioritizes the person living with dementia over the diagnosis. It emphasizes the need for personalized support to provide quality of life.

Take into account factors such as their favorite activities, foods they enjoy, routines, hobbies they once pursued, and cherished memories that bring them comfort.

Situations are influenced by various factors such as family dynamics, personal circumstances, economic situation, and available support systems.

Each person navigates their own set of challenges and experiences unique to their circumstances.

Family dynamics, including relationships with spouses, children, and extended family members, can greatly impact how individuals cope with life’s ups and downs.

Personal factors such as health, education, and past experiences also play a significant role in shaping one’s response to different situations.

Economic stability or hardship can heavily influence the resources and opportunities available to individuals.

The presence or absence of a support network, including friends, colleagues, and community resources, can significantly impact how individuals navigate challenging situations.

Overall, recognizing the diverse range of factors that influence people’s experiences highlights the importance of empathy, understanding, and tailored support in addressing their own special needs.

The journey through dementia is not a neatly delineated ten-step path; rather, it’s a unique path shaped by your identity and the circumstances in which you find yourself.

Embrace your own journey! By honoring the uniqueness of your dementia journey, you empower yourself to navigate it with grace and compassion.

Try not to compare yourself with anyone else. Comparison often leaves us frustrated and weary.

Your dementia path is special and unique. Do what works best for you and your person living with dementia.
... See MoreSee Less

How to Embrace the Uniqueness of Dementia Journey
By Dr. Rocío Arias, MD, MS

Do you find yourself wondering why not all recommendations work for you? Or why some people experience things differently than you do?

These questions often arise when navigating the field of dementia. To answer them we need to understand that each person’s experience with dementia is as unique as their fingerprint. But why?

Not all types of dementia are the same.
Dementia is an umbrella term encompassing various neurodegenerative disorders, each with its distinct set of characteristics and symptoms.

While dementia is commonly associated with memory loss and cognitive decline, the way these symptoms manifest, and progress can vary greatly depending on the underlying cause.

For instance, Alzheimer disease typically presents with progressive memory loss, while vascular dementia may manifest with impairments in decision-making and executive function, due to reduced blood flow to the brain.

Similarly, Lewy body dementia may involve visual hallucinations and fluctuations in alertness, whereas frontotemporal dementia (FTD) often presents with changes in personality and behavior.

Recognizing these differences is crucial for accurate diagnosis and tailored treatment plans. Interventions that work for one type of dementia may not be effective for another.

Each person in this world is completely unique, with their own set of preferences, likes, dislikes, personality traits, needs, abilities, values, and life experiences.

This diversity extends to the journey with dementia. When it comes to providing care for those living with dementia, a one-size-fits-all approach simply doesn’t work.

For example, John may thrive in a bustling social environment, while Mary may prefer quiet, one-on-one interactions. Mary’s needs might differ significantly from John’s because they are two entirely unique individuals.

By recognizing and respecting who they’ve been in the past and who they are in the present, care partners can foster a sense of security and well-being.

Person-centered Dementia Care prioritizes the person living with dementia over the diagnosis. It emphasizes the need for personalized support to provide quality of life.

Take into account factors such as their favorite activities, foods they enjoy, routines, hobbies they once pursued, and cherished memories that bring them comfort.

Situations are influenced by various factors such as family dynamics, personal circumstances, economic situation, and available support systems.

Each person navigates their own set of challenges and experiences unique to their circumstances.

Family dynamics, including relationships with spouses, children, and extended family members, can greatly impact how individuals cope with life’s ups and downs.

Personal factors such as health, education, and past experiences also play a significant role in shaping one’s response to different situations.

Economic stability or hardship can heavily influence the resources and opportunities available to individuals.

The presence or absence of a support network, including friends, colleagues, and community resources, can significantly impact how individuals navigate challenging situations.

Overall, recognizing the diverse range of factors that influence people’s experiences highlights the importance of empathy, understanding, and tailored support in addressing their own special needs.

The journey through dementia is not a neatly delineated ten-step path; rather, it’s a unique path shaped by your identity and the circumstances in which you find yourself.

Embrace your own journey! By honoring the uniqueness of your dementia journey, you empower yourself to navigate it with grace and compassion.

Try not to compare yourself with anyone else. Comparison often leaves us frustrated and weary.

Your dementia path is special and unique. Do what works best for you and your person living with dementia.

Dementia Adventure Thursday: Save the Date: Monday, June 10th at 6pm

Jim Fisher and Kathy Upton will present an overview of the Black Woods Region connecting the historic towns of Franklin and Cherryfield. They will trace the geological and climatological forces that shaped the little Switzerland of downeast Maine, the prehistory and history, natural resource-based activity, and settlement up to the present.

Space is limited. RSVP is required: www.woodlawnellsworth.org
... See MoreSee Less

Dementia Adventure Thursday:  Save the Date:  Monday, June 10th at 6pm

Jim Fisher and Kathy Upton will present an overview of the Black Woods Region connecting the historic towns of Franklin and Cherryfield. They will trace the geological and climatological forces that shaped the little Switzerland of downeast Maine, the prehistory and history, natural resource-based activity, and settlement up to the present.  

Space is limited. RSVP is required: www.woodlawnellsworth.org
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Videos

Please watch this video if you are a first responder or care partner for someone experiencing memory issues. This training mutually benefits first responders and care partners by offering dementia education, communication tips, critical thinking strategies, and ways that families can be prepared when crisis situations occur.

Dementia is one of the greatest fears of people today. This documentary aims to shift that narrative of fear and hopelessness to one of hope and action. There are things we can do as individuals to reduce our risk of developing dementia. There are ways to connect meaningfully with our loved ones, even if they no longer recognize us. We can live a high quality of life after diagnosis. “Keys Bags Names Words” shows intimate profiles of people living with dementia and their care partners. You’ll meet doctors discussing what you can do in your life to support brain health and prevent cognitive decline. And you’ll meet musicians and artists, scientists and policy experts from around the world engaged in a bold approach to tackle a leading global challenge for health and social care in the 21st century, dementia and brain health. This film is not a lament to loss, but an inspiring celebration of the human spirit.

How does a person with Dementia see the World?  Video from the Alzheimer’s Society from the point of view of someone living with dementia. This is part of the Dementia resource for care professionals, page ‘What is dementia?’. This video is copyright of the Alzheimer’s Society.

John’s Hopkins – What is Alzheimers?  Affecting about 44 million people globally, Alzheimer’s disease is the most common cause of dementia.   It could begin progressing 20 years or more before symptoms become apparent.   Experts believe there are things you can do to be proactive about your brain health.

The City of Vancouver is working in partnership with The Alzheimer Society to build inclusive dementia-friendly communities. Jim Mann, who has been living with dementia for eight years, shares his experience.

How Alzheimers Changes the Brain This animation shows how Alzheimer’s disease, a type of dementia, changes the brain. You can also learn about promising ideas to treat and prevent Alzheimer’s disease. Learn more about Alzheimer’s disease: https://go.usa.gov/xtqAH

 
https://youtu.be/Gf9DTwiUdi4  Making Activities Dementia Inclusive:  Discuss the benefits of meaningful activities and explore how different types of activities can be dementia-inclusive. Be inspired to create your own dementia-inclusive activities to help maintain well-being and maximize your enjoyment together. For caregivers and people living with dementia.

 

 

Photo credits, this page. Bottom photo: Laura Zamfirescu, photography  All Rights Reserved.