Dementia Living Plan (eBook)

Until There is a Cure, We Must Manage the Care

MHA Gwen Schultz, RN BA CPHQ Karen Kennedy, MHSA EdD RN Melanie Schicker (Autoren)

eBook Download: EPUB

2025 | 1. Auflage
192 Seiten
Bookbaby (Verlag)
979-8-3509-9400-1 (ISBN)

Infos

This book provides you with a dementia living plan created by a nurse and college professor who lived with dementia.

b044>

---

If you or a loved one has recently been diagnosed with dementia, this book is for you! Inspired by a healthcare professional and college professor suffering with the illness, you will hear the story of how she navigated the healthcare industry following her diagnosis. A Dementia Living Plan has been created to help you navigate the months and years ahead. Being diagnosed with dementia can be scary and this layperson's guide will answer your questions and provide resources and time-saving tips to help you navigate the healthcare industry.

Textauszug

Chapter 2

Individual Stories

It is not how much you do, but how much love you put in the doing.

~ Mother Teresa ~

To bring additional voices to this book, we conducted interviews and gathered testimonials from several carers (those providing care, a.k.a., caregivers) of people living with dementia and professional experts in the field of dementia.

CAREGIVER PERSPECTIVES

Mark Schupp

Past President of the Board of Directors for the Alzheimer’s Association

Mark’s mom was diagnosed with Alzheimer’s at the age of 80. Unsure of where to turn, he called the National Alzheimer’s Association. They helped him navigate the early days of receiving a diagnosis and coping with this major change in their lives. “The Association” visited Mark’s mom several times to perform assessments and share tips on providing care to her.

When his mom started asking the same questions repeatedly, Mark audio-recorded her asking the questions along with someone providing the correct responses and replayed the recordings for her as often as needed to alleviate her anxiousness.

When he would walk her through her finances, her dementia made her believe that any lower number was a bad thing. So, Mark manipulated the columns at times, so they all looked positive. The main goal was to make sure his mom did not spend hours worrying about her finances.

After a year had passed, Mark’s mom went into an independent living facility with care on site. Unfortunately, she could not remember to call for help when getting out of bed. She often fell and eventually suffered a broken hip. She also experienced a change of mental status and was referred to a psychologist, however, it turned out that Mark’s mom had suffered a stroke. After three years in the independent living facility and with her declining health, Mark again turned to the Association for advice. She was transferred from the acute hospital to a facility with a memory care unit. Mark found himself searching for the right type of facility, with low staff turnover, to provide his mom with the best quality of care.

Mark’s mom died when she was 91. Through this experience, Mark shared the things he learned:

1.Try not to move your loved one, since they become disoriented when surroundings change, or familiar things are suddenly no longer there.

2.Understand that your loved one may not react typically to major events, like a death in the family. Following the death of Mark’s sister, his mom said, “I haven’t heard from Pam in a while, didn’t she die?” She was not emotionally connected to the event, despite being Pam’s mother. Mark shared, “At Pam’s funeral, mom seemed to be enjoying herself, since she was socializing with a lot of people she had not seen in a while.”

Jackie Pinkowitz

M.ED Board Chair, Dementia Action Alliance

When Jackie’s mother developed Alzheimer’s, Jackie assumed care for her and used an approach much like she used when she was a special needs educator for young children years before. Instead of focusing on treatment of the diagnosis, Jackie focused on nurturing her relationship with her mother. This allowed Jackie to provide her mother with care that made her comfortable, in addition to addressing her basic needs.

During the caregiving journey, Jackie met Karen Love, who was searching for a community center to engage people living with dementia and Alzheimer’s. When they both realized no such facility existed, they decided to form the Dementia Action Alliance (DAA), a community based on love and acceptance of those living with dementia and Alzheimer’s. Jackie shared, “It is not good enough to say this is what you believe in. I wanted to make sure we are living what we said our values are and what we believe in.”

The following information was taken directly from the DAA website (https://daanow.org/daa-history/):

The Dementia Action Alliance (DAA) was founded in 1996 and received its 501(c)(3) IRS charitable status in 1997. Since 1999 DAA has operated as a virtual organization to deploy all resources for supports and services rather than rent and infrastructure costs. DAA has an Advisory Board of seven individuals living with dementia, and a 13-member Board of Directors, including three members living with dementia. Additionally, DAA has approximately 90 volunteers involved in various programs and activities, including virtual engagement and online discussion programs, podcasts, Speakers Bureau and more.

There are many organizations that have a focus on dementia, but their primary goal is researching the cure. DAA was the first national organization solely dedicated to helping people and their families learn how to best live with the symptoms of dementia, strategies for changing abilities, social engagement, and supports for empowerment and enablement.

DAA’s approach to addressing the societal challenges of living with dementia was grounded in the expertise, commitment, and experiences of its two cofounders – Karen Love and Jackie Pinkowitz. They are both deeply committed to creating a better society in which to live with dementia and have unflaggingly continued this quest for over twenty years. Karen and Jackie embrace “Nothing About Us Without Us”. This motto from the disability movement means inclusiveness – working alongside people living with dementia and their care partners so they can best inform what is needed. Karen and Jackie both are oriented to strengths-based practices from being a speech pathologist and a special education teacher, respectively. Strengths-based practices build on individuals’ abilities rather than focusing on inabilities in a proactive, person- and relationship-centered context. Lastly but importantly, DAA’s uniqueness results from the exemplary leaders who serve on the DAA’s Advisory Board and Board of Directors with a focus on changing the status quo.

Peggy Killian

Public Relations, National Alzheimer’s Association

Peggy’s dad has been living with dementia for the last 4 years. He lives at home in Illinois with 24/7 care, with Peggy and her siblings rotating care on the weekends.

COVID-19 negatively impacted both Peggy’s parents. Her father’s mobility declined quickly from not getting out much and now he has become unsteady. Peggy’s mother has chronic back pain and would be unable to help if he fell. His cognition has started to decline over the past year, and he has suffered from a series of small strokes.

Fortunately, his personality has not changed. Peggy’s dad is still funny and delightful. Peggy stated, “It is still nice to get home and see Mom and Dad. It is nice to take care of them as they took care of me.”

As for the type of dementia he has, it has not been diagnosed. According to Peggy, an autopsy would need to be performed after he passes to learn more.

PROFESSIONAL PERSPECTIVES

Gary Epstein-Lubow, MD

Geriatric Psychiatrist; Associate Professor of Medical Science; Associate Professor of Health Services, Policy, and Practice; Associate Professor of Psychiatry and Human Behavior

Dr. Epstein-Lubow worked for the Federal Government when the U.S. Department of Health and Human Services (HHS) first held a research summit on dementia care. There were three research (focus) groups as part of the summit. One was dedicated to the payers; one to the family/care givers of those living with dementia; and the other was made up of people living with dementia (the Patient group).

As part of Lonni’s commitment to working for the Early-Stage Advisory Group through the Alzheimer’s Association, she helped organize and lead the patient group at the summit. When she met Dr. Epstein-Lubow, they immediately shared their passion for eradicating the stigma behind dementia. Through their working relationship, Dr. Epstein-Lubow came to realize vital facts about people living with dementia:

1.There needs to be an emphasis on individual personality. People living with dementia do not instantly change into a certain molded personality. They remain the same person for their entire life, and they need people to treat them the same until there is a remarkable difference in their medical or cognitive state. Having a different memory does not mean a person has a different personality.

2.The focus for people living with dementia (LWD) needs to be on self-directed support. They are not just automatically dependent on another person because they have a bad memory. People living with dementia can maintain productive lives financially and socially, remaining independent while gradually needing the assistance of a primary support person.

3.Other feedback from the focus group:

a)Approach people with respect.

b)Realize they still have their mental capabilities.

c)Be aware that people LWD may be fragile or sensitive about certain subjects.

d)Approach people at a higher level than you assume they are. Starting too low is insulting.

Dr. Epstein-Lubow verbalized his displeasure that dementia is often thought of as a psychiatric illness, stating,...

Produkt-Details

• Erscheint lt. Verlag: 20.2.2025
• Sprache: englisch
• Themenwelt: Medizin / Pharmazie ► Pflege
• ISBN-13: 979-8-3509-9400-1 / 9798350994001