Voices in Dementia Care: Reimagining the Culture of Care
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Voices in Dementia Care: Reimagining the Culture of Care
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Overview
In these pages, we include transcripts of our interviews with the elder care and long-term care providers we have interviewed about dementia care. The voices of these care professionals are important to hear in their entirety, as they describe the nuances of the challenges inherent in delivering innovative high quality dementia care with limited resources. Based on our analysis of these interviews, we have identified the critical best practices that we believe all elder and long-term care providers should consider when delivering care to people living with dementia. These best practices can be adapted and applied by the informal caregiver as well—the sister, brother, child, or other loved one who may be responsible for caring for a person living with dementia outside of a traditional care environment.
Product Details
| ISBN-13: | 9781626346932 |
|---|---|
| Publisher: | Greenleaf Book Group Press |
| Publication date: | 01/07/2020 |
| Pages: | 304 |
| Sales rank: | 657,479 |
| Product dimensions: | 5.90(w) x 8.90(h) x 0.80(d) |
About the Author
Read an Excerpt
CHAPTER 1
Innovative Approaches to Dementia Care
DEMENTIA takes a toll on every person it touches: the person living with dementia and their loved ones, caregivers, family, and friends. There is no telling when or whom it will strike. The most common type of dementia, Alzheimer's disease, destroys both physical and cognitive skills. Eventually, it prevents a person from carrying out even the simplest of tasks.
People living with Alzheimer's often liken it to a fog that rolls in, preventing a person from making sense of the world around them. Brian LeBlanc is a national public speaker and an advocate for dementia awareness and education. Four generations of his family have been diagnosed with Alzheimer's disease. In October of 2014, he was diagnosed as well. Still in the early stages, Mr. LeBlanc describes his experience with the disease in his blog A Little Bit of Brilliance.
[I]magine driving down the road. Fog has set in and visibility is obstructed. You can't see much, you're cautious of your surroundings because of the dense fog. All of a sudden, you break through to a clearing. You can see all around you ... You get up to get something, the fog rolls in, preventing you from remembering where you are or why you're there. You're in the middle of a conversation, the fog rolls in so thick it turns to night, blocking out every thought, rendering you speechless. You're driving to a very familiar place, again the fog rolls in and you have no idea where you are. You have to rely on your GPS to tell you where to go.
This isn't just sporadic or a one-time event. This is every day, several times a day, a typical day. Sometimes the fog is thicker, sometimes less, but it's ALWAYS there. It's my Alzheimer's journey.
Other common forms of dementia, such as vascular dementia, Lewy body dementia, and frontotemporal disorders, can be equally gruelling for both individuals and the people who care for them. Yet, while the toll dementia takes on an individual and their family is immense, the toll it is taking on societies as a whole is even greater.
The Global Impact of Dementia
Nearly fifty million people globally are living with dementia. The condition strikes so often and so arbitrarily that is has been dubbed "The Silent Epidemic." The number of people with dementia is expected to double every twenty years, reaching seventy-five million in 2030 and 131.5 million in 2050.
The greatest increases are occurring in low and middle income countries. Already, more than half of all people with dementia live in low and middle income countries. By 2050, that number will rise to more than two-thirds. When looking at total deaths due to dementia, China and India are at the top of the list, due to the sheer size of their populations and despite the fact that dementias actually make up a small proportion of total deaths. When adjusted for differences in population size, the country with the highest number of deaths due to dementia is actually Finland.
Much of the increase in dementia rates and deaths due to dementia is fueled by demographic change, with people in rich and poor countries alike living longer lives. The number of people over the age of sixty is expected to more than double by 2050 and more than triple by 2100. While dementia is not caused by aging, it is much more prevalent among older individuals compared to the young. At present, the global population of people sixty and older is growing faster than any other age group.
Across the board, countries and communities must begin to bear an increasingly heavy burden of costs for dementia care and treatment. Dementia is a complicated disorder and providing high quality, coordinated, and low cost care is a challenge for any country. In low and middle income settings, where healthcare resources are already stretched thin, the challenge is even more daunting.
Many recent studies have shown that significant improvements are needed in the diagnosis and treatment of dementia, especially in terms of access to services, disease management, and communication and coordination. People with dementia often receive fragmented and uncoordinated care that does not properly address their needs or the needs of the friends and family who care for them. Even the initial step to treatment — diagnosis — is out of reach for most. The vast majority of individuals with dementia have never been diagnosed.
ACCESS Health International is a global nonprofit committed to ensuring that all people, no matter what their age or health condition, have access to high quality and affordable care. Over the past two years, Jean Galiana and Sofia Widén of ACCESS Health have interviewed more than sixty pioneers in elder care and dementia care in Denmark, Norway, the Netherlands, and across the United States. These interviews have helped us identify best practices in dementia care. Our analysis of these practices can help public and private healthcare providers implement new and more cost effective ways to deliver care. They can also help individuals living with dementia and their caregivers understand innovative options for care that they may not know exist.
In the pages that follow this opening analysis, we include transcripts of our interviews with the elder care and long-term care providers we have interviewed about dementia care. The voices of these care professionals are important to hear in their entirety, as they describe the nuances of the challenges inherent in delivering innovative high quality dementia care with limited resources.
Based on our analysis of these interviews, we have identified the critical best practices that we believe all elder and long-term care providers should consider when delivering care to people living with dementia. These best practices can be adapted and applied by the informal caregiver as well — the sister, brother, child, or other loved one who may be responsible for caring for a person living with dementia outside of a traditional care environment.
The Importance of Inclusion
One overarching best practice that should be applied to each of the sections below is the concept of inclusion. This idea is best explained in our interview with the Dementia Action Alliance, a diverse coalition of activists working to create a better society for individuals who live with dementia. Karen Love is the Executive Director of the Alliance. She describes the catalyst for the creation of the Alliance, which was formed after she and other individuals passionate about dementia learned that the government had built a federal advisory council made up of researchers and clinicians but not a single person living with dementia.
She notes, "[The perspective of people living with dementia] is crucial. They offer insights and solve issues from their unique vantage point. What could be better? I do not know why every organization dealing with any aspect of dementia does not include those living with dementia. They are an invaluable resource."
Ms. Love goes on to describe the importance of inclusion at an even broader level:
People living with dementia also need to be included in society. As their condition progresses, a person living with dementia loses the ability to self-initiate. That is often the reason why those living with dementia are not doing anything. They are inactive not because they do not want to be active, but because they need to be kick started through engagement. Inclusion and involvement is better for their health. It is better for their overall well-being. Many basic needs of people living with dementia, such as engagement, go unmet.
Love's colleague Jackie Pinkowitz, chair of the Alliance Board of Directors, described the concept of inclusion further:
Karen and I were committed to the concept "nothing about us without us" from the very beginning of the Dementia Action Alliance. The expression comes from the disability world. I used to teach special needs children, and later my mother developed Alzheimer's, so I had that philosophy and mindset. We knew that the voices of those living with dementia were not being heard anywhere that mattered. We created an advisory council entirely of people living with dementia.
The notion of inclusion applies to all best practices related to dementia care described below. Indeed, putting the person living with dementia at the center of the caregiving experience is among the most important best practices our research and analysis unearthed.
Person Centered Care
Person centered dementia care puts the person living with dementia at the center of all caregiving efforts and promotes quality of life regardless of physical or cognitive condition. This type of care honors a person's priorities, preferences, and personality, while still ensuring that their health and well-being are well taken care of.
Janne Rosvik is a registered nurse with a PhD in person centered care and dementia care from the University of Oslo. She has been working with the Norwegian Advisory Unit for Aging and Health for the past six years. Dr. Rosvik built on the work of two pioneers in dementia care, Tom Kitwood and Dawn Brooker, to develop a practical model of person centered caregiving based on four key elements: values, individuality, perspective, and social inclusion. This model has become known as the VIPS practice model.
In her interview with ACCESS Health, Dr. Rosvik describes a person centered model of care:
The core of person centered care is to think of a person with dementia as a person who has the same needs as everybody else. What is happening in his brain does not change his value as a person. It makes him a person with problems in the brain. His feelings and his emotions are still there, maybe even a bit stronger. When the person becomes agitated, which we often see, it may be because he is unable to express himself. We need to learn how to use all the knowledge we have about symptoms of dementia to try to understand the person's perspective on the world around him. What happens in his brain often makes it difficult for him to explain with words, so he may have to use other means of communication. It is our responsibility to learn his way of communicating. We don't just try to make this person nonaggressive; we try to understand him.
The VIPS practice model that Dr. Rosvik developed includes twenty-four indicators that guide caregivers in any situation, ensuring that they offer person centered care to the person living with dementia. The indicators are based on the four elements of the VIPS practice model, as Dr. Rosvik describes:
The "V" stands for the values of person centered care. The main value is that the person with dementia and the perspective of this person is just as important as our own perspectives as caregivers. The "I" is for individual care, which means we observe and note each person's unique traits. What is special about this person? What are his habits? What other illnesses does he have? The "P" is for perspective of the person. How does the world look from his point of view? The "S" is for social inclusion. Are his social needs taken care of? Is he included in social fellowship with other people? Each letter has six subindicators, which are used in the analysis that is part of the VIPS practice model. We check all twenty-four indicators and determine if any one of those is relevant to a given situation ... Is the external environment here good for the person? Is there something in the environment that is disturbing him? Do we care about his perspective? Are his human rights taken care of? The "I," P," and "S" indicators are used most because they are more concrete, but we do not skip any of the four elements. This is how we make sure that person centered care is the focus.
This practical approach to implementing person centered care is echoed by Davina Porock, who was trained at the University of Bradford in person centered care and eventually established the University of Buffalo Institute for Person Centered Care in 2012. As part of her research with the Institute, she examined how to measure person centeredness and to determine that person centered care was actually occurring.
People used to say, "Oh, it is just about being nice. If everyone is just nice to the elderly people, we'll be fine." It is much more than that. Patient centeredness is not the classic picture of old people parked around the edge of the lounge room of the nursing home, asleep in their chairs. The practice of only keeping residents clean and dry actually does more harm than good.
People with more advanced dementia can have what are sometimes called "difficult behaviors." They can be aggressive. Sometimes they might hit, bite, or scream. People with advanced dementia can become agitated and pace the floor, trying to escape, or repeatedly call out. These behaviors are misunderstood.
Someone with dementia cannot comprehend what or who is coming at him or her. Someone with dementia cannot comprehend people talking or doing things quickly. The only thing they can do to take back control is to stop, hit, or resist in other ways. These behaviors need to be understood as stress reactions, not bad behavior. We have created a malignant social environment that does not treat these behaviors as distressed responses. Dementia patients have few other options than to respond negatively. Dementia patients want to have control over their environments and what happens to them, just like any other person.
We can reduce their stress by changing to a person centered approach. For example, we can change the way we speak to people. We can ensure that we do not take people by surprise. We can give visual cues such as hand cues to say what we are doing instead of only verbal cues. A specific example is to take the hand of the patient and help them clean their teeth rather than brushing their teeth for them. These changes are very simple things, but they all take time. People have to be reminded that these person centered approaches are important.
The challenge is how to apply the person centered care processes in institutional settings. It can be difficult to get traditional nursing homes to include the values, likes, and dislikes of the individual in their care model.
Applying Person Centered Care in a Long-Term Care Setting
While researchers like Dr. Rosvik and Ms. Porock consistently agree that person centered care is a best practice that must be applied to improve the quality of life and care for people living with dementia, ACCESS Health explored how that approach is actually delivered in nursing homes, elder care facilities, and other long-term care settings.
Lotta Roupe has worked as an elder care nurse in long-term care facilities for more than forty years. In 2001, she graduated from the one-year education program at Stiftelsen Silviahemmet, which is a nonprofit foundation dedicated to improving the quality of life for persons affected by dementia and their families. The cornerstones of the Silviahemmet philosophy include person centered care, along with team work, family support, communication, and relationship building. Ms. Roupe currently manages the Silviahemmet day care center in Stockholm, Sweden, which cares for young and elderly people affected by dementia.
Ms. Roupe describes how person centered care is realized daily at care facilities:
If an individual starts looking for the bathroom and cannot find it, a staff member may intervene early to guide that person to the bathroom. This intervention prevents that person from feeling confused, anxious, or frustrated because he or she cannot find the bathroom.
The role of caring for people who suffer from dementia involves knowing the person, being able to read signals, being able to step in and provide a hand of support, but also being able to reflect carefully upon when to intervene and when to step back ...
To deliver person centered dementia care, every caregiver needs to take the time to get to know the person who suffers from dementia. Caregivers need to create a relationship with the individual to deliver person centered care. Caregivers do this by spending time with the individual and talking about what matters to him or her. The caregivers eat together and sit down to have coffee with the visitors.
Ms. Roupe uses the term "visitors" to describe the people living with dementia who visit the day care center.
The staff members are not viewed as caregivers, and they do not view themselves as caregivers. The staff members view themselves as friends of the visitors and they communicate in that way. This is an important element of the care philosophy, especially for the younger elderly who suffer from dementia. The younger elderly do not want to be treated like patients. The younger elderly want to participate in activities and enjoy company during the day. The younger elderly need support but want to feel normal.
(Continues…)
Excerpted from "Voices in Dementia Care"
by .
Copyright © 2018 ACCESS Health International.
Excerpted by permission of Greenleaf Book Group Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Innovative Approaches to Dementia Care,
Living with Dementia An interview with Brian LeBlanc,
Redefining Dementia An interview with Karen Love, Jackie Pinkowitz, and Lon Pinkowitz of the Dementia Action Alliance,
Norwegian Advisory Unit for Aging and Health An interview with Janne Rosvik,
Person Centered Dementia Care and Healthy Dying An interview with Davina Porock,
A Palliative Approach to Dementia Care An interview with Lotta Roupe,
Person Directed Dementia Living An interview with Beatitudes Campus,
St. John's Case Study An interview with Rebecca Priest,
Dementia Beyond Disease An interview with Allen Power,
Dementia Village An interview with Eloy van Hal,
Dementia and Farm Life An interview with Gerke de Boer and Annie Herder,
Improving Dementia Care and Care of the Elderly An interview with Linda Martinson,
Elder Care Technology An interview with Bo Iversen,
Rise Care Home A case study based on interviews with Kirsten Springborg and Mette Pawlik Olesen,
Aabenraa Municipality An interview with Jakob Kyndal,
A Neighborhood Model of Care An interview with Jos de Blok and Gertje van Roessel,
Supporting the Caregiver An interview with Mary Mittelman,