auntieannie

This book is different -- looking at how the arts relate to dementia, but in a deeper and more philosophical vein than simply doing some arts and crafts. This was a thought-provoking book for me. "But what I am getting at is that re-membering is essentially not only an act of retrieval, but a creative thing, it happens in the moment; it's an act, an act ... of the imagination." -- from the play Mnemonic (London: Methuen Press, 1999).Part 1: our fears about dementia. Part 2: the stories we tell about dementia in popular culture. Part 3: moving through fear : stories about dementia that inspire hope. Can the caregiving experience have the potential to be reciprocal? Is the experience of dementia only a tragedy?"photography has completely revolutionized the way we think about and practice individual and family memory, just as it has radically transformed our expectations of memory. As cameras and film went down in price and photography became more accessible to middle-class families, people came to expect photographs of the significant events of their lives, as well as the everyday moments that would otherwise be filtered out by our mind's selective process." p. 22 2 significant waves of memory loss in US culture in the last 65 years:1) WWII era movies: Random Harvest(1942); Spellbound(1945); Blue Dahlia(1946); Deadline at Dawn(1946); Somewhere in the Night(1946); and The Great Dictator(1940)2)roots in the '80s, but hit full force in the mid-1990s. Include comedy, indy, action, sci-fi/fantasy, and drama. 50 first dates. Desperately seeking Susan. Memento. Eternal sunshine of the spotless mind. Mulholland Drive. Nurse Betty. The long kiss goodnight. The Bourne identity. The Bourne supremacy. The Bourne ultimatum. Total recall. The matrix. Vanilla sky. Paycheck. The majestic. A very long engagement."What is triggering this current fascination with memory loss?" Changes in economic cycles, technology, a reaction against instant gratification..."I agree with their observations. But there is also an elephant in the room that none of these astute cultural critics even mention in passing: Alzheimer's disease and our awareness of the disease since the 1980s. ... The films, which do not treat the theme of memory loss as an age-related issue, might be avoiding the direct representation of a phenomenon that frightens so many people so much." p.51-52She goes on for a discussion of amnesia -- it is extremely rare. See also Appendix D: timeline of stories and events in the recent history of dementia. Begins in 1980 with a Dear Abby column that triggers 30,000 responses and continues through 2008 (the book is published in 2009). Memory Loss Initiative interviewing tips:- Use short sentences. Try not to combine two ideas. For example, it's best to "How did it feel growing up during the Depression?" and then, later, follow up with "Did you feel poor?" rather than combining the two thoughts.- Speak at a normal rate -- not too slow, but not too fast. - Keep in mind that it might take a while for someone to process a question or come up with an answer. Be patient. Don't follow up with another question right away. - A little prompting may be necessary. It may be helpful to provide some information before you ask a question. For example, you might say, "I know you and Dad met at a school dance. I wonder how you felt when you first saw him."- You might have to phrase the same question a number of different ways before a person understands it. Here is an example: "Tell me about your brother, John." "You and your brother John are so close now. Why do you think that's the case?" "It seems as if your brother John has always been your favorite brother. Why do you think that is?"- Don't hesitate to share some of your own stories about the storyteller with him or her during the interview. Those stories often spark a memory or just delight the person. - Be general when you ask a question. Instead of asking about the "happiest" or "hardest" times in a person's life, ask about "happy times" or "hard times."- If someone goes off topic, go with him. Sometimes the best conversations happen this way. You can always redirect the person to your original question later. - Assure the storyteller that it's okay to ask for clarification. It's okay to say, "I don't remember." You can simply rephrase a question or ask a new question and return to the topic later.- Be aware that the interview experience might evoke some of your own emotions. - Enjoy the opportunity to share the stories, thoughts, and emotional closeness that comes with this experience. p.74-75TimeSlips creative storytelling project. When she strikes out in getting people in a nursing home to reminisce, she comes up with having them make up stories. She starts with a picture and asks questions: what should we name this person? Where does he live? What does he eat? Museums such as MOMA doing programming specifically for people with dementia and their caregivers. Conclusion: how and why to move through our fears about dementia. 1. Insist on complex stories of dementia. 2. Embrace the gray. We have a tendency to see dementia in black and white. Like pregnancy, it seems, one can't be a "a little bit" demented. You are or you aren't. But people can live with dementia for 15 years or more. People can have symptom-free days, hours, minutes or seconds. 3. Advance the dementia advocacy movement. "The dementia advocacy moment is roughly 20 years behind the considerable accomplishments of the various disability rights movements. There are lots of reasons for this lag. ... The disability rights movement is a complex mosaic of multiple movements. It is not uncommon for various factions to disagree. ...It has also been common for groups with physical disabilities to distance themselves from those with cognitive disabilities. ... Another reason that the dementia advocacy movement lags behind is that unlike various disability rights movement, it cannot lean heavily on economic arguments.... The dementia advocacy movement should insist on accessibility. Support for people with dementia shouldn't just come from adult day programs or assisted living or nursing home recreation activities. Cultural institutions of every size and shape should address cognitive disability in their accessibility programs... The dementia advocacy movement has some catching up to do, but it can also teach the disability rights movement about the complexity of dependency. The disability rights movement's focus on independence is clearly not at the core of dementia advocacy. People with dementia enter into complex relationships of care with family, friends, and paid care partners. 4. Think creatively and fight for better options.5. Think and act in coalition. Kids with lead poisoning will be the next generation of adults with dementia. Farm subsidies provide incentives for producing high-fat, corn-fed cattle and high-fructose corn syrup, which contribute to obesity, heart disease, and diabetes. Research now tells us that heart health is closely linked to brain health. Might the American Heart Association be a partner in dementia advocacy? Might people in early-stage dementia fight farm subsidies? We need to think creatively about who might share a mission to improve the quality of life among people with cognitive disabilities, build relationships, and get savvy about how to make change. 6. Value listening, silence and the present moment. 7. Understand the memory is more than individual property. ...There are two basic definitions of memory. The first refers to our traditional sense of memory, of bringing the past into the present. The second refers to forming a community. "Remember me to your parents," we might say to a friend. "Remember me to your husband." ... We must remember that memory is social, that the "self" is relational. To forget this is to ignore one of our best "cures" for memory loss -- creating a net of social memory around a person whose individual control of memory is compromised. This doesn't mean that we should visit people more. This means that people with memory loss need to be reknit into the fabric of our lives. The members of a nursing home staff shouldn't think of a spouse or a son or a daughter or a friend as a visitor. They should think of them as part of their community. 8. Healing is bigger than memory. Perhaps simply shifting the language of healing so that it leans less on memory and more on something like shared visions will help reduce the pressure put on memory to be the locus of all hope for healing. 9. Assert the value of forgetting. Forgetting can be a good and healthy thing. Letting names, numbers, places fall through our netting enables us to focus on other, possibly more important things. ... A certain amount of forgetting also enables us to see the forest, not just thousands of individual trees with millions of individual needles. Forgetting makes us human. 10. Insist that it is normal for young people to care about aging. 11. Open avenues for meaning-making. When people with late-stage dementia exhibit a "problem behavior", [Dr. Christine] Kovach asks the staff to consider what they might be trying to communicate. Are they in pain? Part of her care plan asks the staff to determine if people in late stages are getting at least 10 minutes of "meaningful human interaction" per day. Meaningful human interaction can be a hand massage or simply someone sitting and talking to them. It's heartbreaking to think that we'd need Dr. Kovach's assessment guidelines. It is heartbreaking to know that just 10 minutes can make such a big difference. And it's even more heartbreaking to know that there are many, many people with dementia who go without those 10 minutes, whether they live at home or in facilities. 12. Don't be afraid of reducing fear.