Reimagining Dementia with help from Process Theology
Beyond Stigma
"We shouldn’t be so tied to the idea that the predementia self was the most pristine or pure or true version of yourself, and the one with dementia is somehow less valid. That creates stigma and gives others permission to distance themselves...For me, the fear was reduced when I got to know people living with dementia and realized they are not defined by their disability. They are not lost. They are not empty shells, even though they are often treated that way. They wish for the same things I wish for, which are to love and be loved, to be treated as a whole person with a history."
Lynn Casteel Harper, Minister to Older Adults. Riverside Church, NYC, author of "On Vanishing: Mortality, Dementia, and What It Means to Disappear."
Lynn Casteel Harper, Minister to Older Adults. Riverside Church, NYC, author of "On Vanishing: Mortality, Dementia, and What It Means to Disappear."
The Reimagining Dementia Movement
Are you taking care of someone with dementia? Have you been diagnosed with dementia? Are you part of the dementia community? Welcome.
You know that dementia can be difficult. If we are among those who have been diagnosed with dementia, we are stigmatized as "having lost it" or being "on the way out" of life's better sides. And dementia itself can include a range of complications that are hard to handle: memory loss, difficulty communicating or finding words, trouble with visual and spatial abilities, problems with reasoning or problem-solving, trouble performing complex tasks, poor coordination and control of movements, confusion, disorientation, personality changes, depression, anxiety, agitation, inappropriate behavior, and hallucinations. None of this is easy.
If we are caregivers and family members, we, too, struggle. We must deal with the memory loss and impact of the disease on our loved one, handling the stress and emotional toll of being caregivers, having patience with our loved one, handling our loved one’s mood swings or behavior changes, managing daily activities, keeping our loved one positive and motivated, and dealing with financial difficulties. Sometimes we are forgotten.
And yet, amid the difficulties, there can also be a positive side, for the person diagnosed with dementia and for caregivers. Dementia can open the door for improved relationships and new forms of creative, joyful living. It can even be fun. Often this positive side is overlooked when the narratives are one-sidedly negative.
The Reimaging Dementia Movement is devoted to claiming the positive side.
The movement is a coalition of individuals and organizations that are reimagining dementia in local settings, learning from one another along the way. It is helping people around the world:
Toward these ends the Reimagining Dementia movement finds special value in the arts: It supports the role that art can play in raising awareness and promoting social change; and it brings play, performance, improvisation, and the arts into homes, organizations, communities, and dementia care settings.
This page is offered in support of the Reimaging Dementia movement. I subscribe to their ideals, have a music ministry in my own local setting for friends with Alzheimer's and their families. I know from experience that there can be a positive side to dementia. The narrative of tragedy too often dominates when we talk about dementia and the very word "dementia" gets in the way, Truth be told, dementia is not simply a lack of socially privileged cognitive skills, it is also, or can be, the emergence of healthy relationships and certain kinds of joy. Dementia can be renamed in fresh ways, as involving new and different forms of mentation and honoring the fact that, over time, new versions of a "self" can emerge that are different from the past, but have value in their own right. Dementia can be, as it were, rementia.
Click here for the organization's website, and scroll down for videos they offer.
You know that dementia can be difficult. If we are among those who have been diagnosed with dementia, we are stigmatized as "having lost it" or being "on the way out" of life's better sides. And dementia itself can include a range of complications that are hard to handle: memory loss, difficulty communicating or finding words, trouble with visual and spatial abilities, problems with reasoning or problem-solving, trouble performing complex tasks, poor coordination and control of movements, confusion, disorientation, personality changes, depression, anxiety, agitation, inappropriate behavior, and hallucinations. None of this is easy.
If we are caregivers and family members, we, too, struggle. We must deal with the memory loss and impact of the disease on our loved one, handling the stress and emotional toll of being caregivers, having patience with our loved one, handling our loved one’s mood swings or behavior changes, managing daily activities, keeping our loved one positive and motivated, and dealing with financial difficulties. Sometimes we are forgotten.
And yet, amid the difficulties, there can also be a positive side, for the person diagnosed with dementia and for caregivers. Dementia can open the door for improved relationships and new forms of creative, joyful living. It can even be fun. Often this positive side is overlooked when the narratives are one-sidedly negative.
The Reimaging Dementia Movement is devoted to claiming the positive side.
The movement is a coalition of individuals and organizations that are reimagining dementia in local settings, learning from one another along the way. It is helping people around the world:
- strengthen the voices of people living with dementia;
- share what the dementia community has learned about living more joyfully with uncertainty, fear and isolation;
- helping build communities that are all-age friendly and all-condition friendly, rejecting the stigmatization of people with dementia and honoring the wisdom and joy they and their caregivers bring to society and the world.
Toward these ends the Reimagining Dementia movement finds special value in the arts: It supports the role that art can play in raising awareness and promoting social change; and it brings play, performance, improvisation, and the arts into homes, organizations, communities, and dementia care settings.
This page is offered in support of the Reimaging Dementia movement. I subscribe to their ideals, have a music ministry in my own local setting for friends with Alzheimer's and their families. I know from experience that there can be a positive side to dementia. The narrative of tragedy too often dominates when we talk about dementia and the very word "dementia" gets in the way, Truth be told, dementia is not simply a lack of socially privileged cognitive skills, it is also, or can be, the emergence of healthy relationships and certain kinds of joy. Dementia can be renamed in fresh ways, as involving new and different forms of mentation and honoring the fact that, over time, new versions of a "self" can emerge that are different from the past, but have value in their own right. Dementia can be, as it were, rementia.
Click here for the organization's website, and scroll down for videos they offer.
Process Theology &
Reimagining Dementia
Jane could hardly believe it. Her relationship with her mother had been tense for much of her life, but as her mother entered the final stage of her life, diagnosed with dementia, the relationship improved considerably. Her mother was kinder, sweeter, with a newfound sense of humor and appreciation for their relationship. For the first time in a long time, Jane enjoyed being with her mother. It was strange to admit to herself that things were actually “better,” for her mother and for her, because she’d been conditioned to think that people with dementia are no longer themselves. She disagreed. She felt that dementia had helped her mother become a better self. It had helped her become a better self, too. She was kinder and more patient with her mother. Yes, it was hard. But some of it was good, too.
She didn’t like the word dementia because it named something lacking. She coined the phrase rementia." To her mind, her mother had entered into a new form of mentation. She knew that process philosophies and theologies say that every moment of experience has a mental side as well as a physical side, and that the mental side includes many different forms of feeling. She wondered if, in fact, her mother’s “dementia” had not enabled her to uncover other kinds of feeling that were good and positive. She asked if I’d write a little piece on the positive side of dementia. Here it is.
Process philosophy and theology can help us destigmatize and reimagine dementia in many ways. Here are some "process themes" to keep in mind in
- Living in the Moment: Process philosophy highlights the significance of embracing the present moment. It aligns beautifully with dementia's ability to heighten one's focus on the here and now. Those with dementia often find joy in simple, immediate experiences – the warmth of sunlight, the taste of a cherished meal, or the laughter shared with loved ones. This gift encourages us to treasure the beauty of each passing moment and cherish the present as a unique and precious time.
- Living with Uncertainty: Process philosophy acknowledges the value of living with uncertainty as an inherent part of life. It reminds us that the future remains open and not yet determined, even for God. Embracing this uncertainty parallels the journey of dementia, where individuals and their families navigate uncharted waters. It encourages us to find meaning and purpose in each unpredictable moment.
- Embracing the Arts, Music, and Performance: The creative arts, music, performance, and theatre serve as powerful mediums for individuals diagnosed with dementia, their loved ones, and caregivers to discover joy within their communities. These expressive outlets allow for self-discovery, connection, and emotional release. Music, in particular, can evoke memories and emotions that might otherwise remain dormant. By embracing these forms of artistic expression, we enrich the lives of those affected by dementia, providing moments of beauty and connection amid life's challenges.
- Sense of Humor: Dementia can often unearth a sense of humor that transcends social constraints and inhibitions. Those with dementia may find laughter in unexpected places, shedding light on the importance of humor and levity in our lives. It encourages us to embrace laughter as a means of fostering connections and experiencing joy, even in the face of adversity.
- Renewal of Connections: Dementia can foster a renewal of connections between individuals and their loved ones. As memories fade, relationships become less entangled with past grievances or misunderstandings. People with dementia frequently express their emotions more openly, nurturing deeper bonds with those around them. This gift underscores the significance of human connection and prompts us to prioritize and nurture our relationships.
- Reframing Identity: Process philosophy's view of the self as an ongoing process rather than a fixed entity offers a fresh perspective on individuals with dementia. It encourages us to acknowledge that while their cognitive abilities may change, their essential humanity remains intact. By embracing this evolving nature of the self, we can celebrate the new dimensions and qualities that individuals with dementia bring to their identities.
- Appreciating Uniqueness: Process philosophy and theology emphasize the uniqueness of each moment and individual experience. This outlook encourages us to value the distinct journey of each person with dementia. It serves as a reminder that there is no one-size-fits-all experience of dementia, urging us to approach each individual with openness and respect for their particular gifts and challenges.
- Recognizing God's Lure in each person: Process philosophy and theology recognize God's all-encompassing presence in every individual. This presence is a catalyst for experiencing the richness of life in the present moment. It invites us to uncover moments of spiritual and personal growth within the dementia experience, acknowledging the divine presence in all facets of life.
- Enriching Differences: Process philosophy acknowledges that differences, including diverse selves, contribute to the vibrancy of existence. It encourages us to celebrate the diversity of human experiences, including those with dementia, as enriching the tapestry of life.
- Remembering Life's Purpose: Process philosophy challenges the notion that life's purpose is solely defined by appearance, affluence, and marketable achievements. Instead, it emphasizes the significance of discovering beauty in each moment. This critique prompts us to shift our focus from external markers of success to finding meaning and purpose in the simplicity and authenticity of each passing moment.
- Connecting with the More Than Human World: Process philosophy recognizes the enrichment brought about by connections with the more than human world – encompassing plants, animals, hills, rivers, and the natural environment. This perspective encourages forms of dementia care that leverage these bonds, connecting individuals with the natural world. Such connections offer solace, joy, and a heightened sense of connection, enriching the lives of those living with dementia and their communities.
- Recognizing that Life is a Journey: Process philosophy highlights life as a continuous journey, extending beyond physical death. It invites us to view dementia as a stage within this broader human experience, fostering a sense of continuity and possibility. By recognizing the continuum of life's journey, we can better navigate the challenges presented by dementia with empathy and understanding.
Make no mistake. Dementia can be sad and hard, both for those diagnosed with it and for caretakers. There is no need to romanticize dementia. But there is indeed a need to destigmatize it, recognize its potential gifts, and discern the gifts it can offer the whole of society because differences make the whole richer.
- Jay McDaniel
Videos from The Reimagining
Dementia Movement
|
|
|
|
|
|
|
|
|
The Mental Pole of Experience
A technical note: From the perspective of process philosophy, a human person is a series of concrescing subjects beginning with birth or earlier and extending to death and perhaps afterwards. We are, over time, many selves. The self that a person is at age 6 is different from the self a person is at age 26, which is still different from the self a person is at at 46, and so on. Each self inherits from predecessors but is different from those predecessors. At any given time in our lives, we are new version of ourselves.
At each moment our self a moment of experience, or an actual occasion of experience, with two poles: a physical pole that feels the presence of the personal and collective past and a mental pole that feels the presence of possibilities for responding to that past and integrating the influences in some way. The mental pole consists of many kinds of feelings: conceptual, imaginative, anticipatory, recollective, and otherwise. These feelings may or may not be conscious. They include our aims, moods, and motivations. They our interiority.
Dementia is a change in the mental pole of experience. It is accompanied by the loss of some forms of feeling or prehending in the mental pole, even as others continue or arise for the first time. These other forms of feeling can include distress and anxiety, but they can also include positive feelings and moods: humor, calm, tenderness, for example, which may be valuable in their own right but not necessarily "cognitive" in a narrow sense, yet wise in other senses. They may also include forms of knowing. A person with dementia may well be "wise," but not in ways that involve conscious memory, or in ways society understands or in ways conducive to daily life. The "mentation" may be of a different kind.
Much depends on the relationship between mentation and the brain. Some philosophies equate the self with brain activity, pure and simple. Process theology does not. It sees the concrescing subject (sometimes called the mind or the psyche) as more than the brain, even as influenced by the brain. It receives influences from the brain, but can also receive influences from other sources, including God. When a person with dementia is "disoriented," he or she may be oriented toward different realities in the "confused" state and know things others do not. As we interact with people diagnosed with dementia, we can and should be open to this side of their lives. They can be our teachers.
- Jay McDaniel
At each moment our self a moment of experience, or an actual occasion of experience, with two poles: a physical pole that feels the presence of the personal and collective past and a mental pole that feels the presence of possibilities for responding to that past and integrating the influences in some way. The mental pole consists of many kinds of feelings: conceptual, imaginative, anticipatory, recollective, and otherwise. These feelings may or may not be conscious. They include our aims, moods, and motivations. They our interiority.
Dementia is a change in the mental pole of experience. It is accompanied by the loss of some forms of feeling or prehending in the mental pole, even as others continue or arise for the first time. These other forms of feeling can include distress and anxiety, but they can also include positive feelings and moods: humor, calm, tenderness, for example, which may be valuable in their own right but not necessarily "cognitive" in a narrow sense, yet wise in other senses. They may also include forms of knowing. A person with dementia may well be "wise," but not in ways that involve conscious memory, or in ways society understands or in ways conducive to daily life. The "mentation" may be of a different kind.
Much depends on the relationship between mentation and the brain. Some philosophies equate the self with brain activity, pure and simple. Process theology does not. It sees the concrescing subject (sometimes called the mind or the psyche) as more than the brain, even as influenced by the brain. It receives influences from the brain, but can also receive influences from other sources, including God. When a person with dementia is "disoriented," he or she may be oriented toward different realities in the "confused" state and know things others do not. As we interact with people diagnosed with dementia, we can and should be open to this side of their lives. They can be our teachers.
- Jay McDaniel