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The staff and some of the relatives chose to provide written responses to the questions. The questions covered feelings and thoughts about the movie, the benefits of the movie, repeat watching of the movie, anything they wanted to change and their preference between the conventional life storybook and the digital life storybook movie.
Each theme was defined, and the themes were named. This process was checked by another researcher. All the six participants successfully engaged in and completed their participation in the project. They all reported enjoying taking part in the project Supplementary materials , Table S1. None wished to make any changes to their current life story movie. Four participants needed a little assistance from relatives and care staff to operate the DVD player.
For the remaining two participants, one could sometimes operate it with a little assistance and sometimes needed someone else to start the movie mainly due to an antiquated TV set. One participant needed complete assistance due to limited physical movement. However, all participants needed someone to remind them to play the movie.
One participant had a reminder note near to the TV asking staff and visitors to turn on the movie — this participant viewed her movie twice as often as the other participants. Most of the participants watched their movie at least three to four times in a week with assistance from a relative, carer, and researcher. If given a choice, most of the participants reported preferring to have their life storybook in digital form.
Table 3 shows the quantitative results, indicating the change in scores from the end of the initial conventional life storybook project to the point where the person had had the digital life storybook for 4 weeks. Five participants John, Sam, Betty, Mary, and Ann had improved scores on the quality of life measure.
Five participants reported a lower score on the GDSR, and the sixth showed no change. The mean level before the digital life storybook was commenced was relatively low 2. On the AMI-E, all six participants improved their performance on the knowledge aspect of the test. The average improvement was 9 points. Taking a total score on this test, combining the subscales, five of the six participants showed an improvement, and both subscales showed an improvement from the original baseline.
The quality of relationship between participants and their relative, rated by the person with dementia, showed overall improvement in both subscales. On the warmth subscale, all participants reported improved scores, with a mean improvement of 6. On the conflict subscale, four participants showed improved scores, with an overall average improvement of 3. On the warmth subscale, three relatives relative of John, Sam, and Ann scored maximum points at baseline and maintained this score after having the life story movie.
The average improvement in the warmth subscale rated by the relative of the person with dementia is 0. On the conflict subscale, the average improvement was 1. Participants, relatives, and staff welcomed the idea of developing a life story movie and reported a positive experience of taking part in this project. Examples of feedback on the usefulness and benefits of the digital life storybooks are shown in Supplementary materials Table S2. A number of key themes Table 4 emerged from the thematic analysis.
First, relatives and people with dementia agreed that the digital life storybook was stimulating and triggered past memories:. A second theme related to the feelings and emotions associated with watching the movie. The relatives reported positive emotions in themselves as well as for the person with dementia:.
Sometimes make us feel sad. Some staff and relatives commented on how the movie encouraged communication and interaction:. Encouraged Ann to talk about her history. For staff, a major theme related to the information and knowledge they gained about the person with dementia:. Yes, it helped me understand Ann more. However, staff also pointed out that the person would often not remember the movie until shown it:.
Vignettes for four of the participants are presented here; the remaining two are included in the Supplementary materials. John was an year-old widower, diagnosed with dementia over 5 years ago, living in a care home for the last 3 years, His nephew, who had been closely involved in caring for John, agreed to participate with John. He visited the care home regularly. John was randomly assigned into the life review group in the initial project and he enjoyed taking part in the life review process, which stimulated many pleasant memories, eg, playing golf with his wife, holidays, and dancing with his wife.
John was very happy with his life storybook and proudly showed it to other residents, staff, and visitors at his care home, explaining about the pictures in his book and talking animatedly about his pictures with his wife. Approximately 4 months after the final follow-up assessment in the initial project, John was approached again to take part in the digital life storybook project. Both he and his nephew agreed to extend his life storybook to become a life story movie. John also recorded a few words about his wife in his own voice.
John proposed two main changes at the initial viewing: first the movie was moving too fast for him and he wanted one of the songs matched with photographs of him and his wife dancing. After the movie was revised and finalized, with assistance, John watched his movie at least three to four times a week. The movie triggered many conversations:. It encouraged John to ask questions while watching the movie about people he may not have recognized and asking about their whereabouts.
John preferred his story movie compared to his life storybook. He was happy with his movie and said:. Very good! Make me feel good […] It bring back my memories […] I remembered I love to play golf […] I love all the songs, the songs that I and my wife used to dance together […] Nice […] very nice. John has easier access to the book. He can just pick it up when he wants. Operating a DVD would be difficult for him [Care staff]. The book is a good idea; the staff will look at it more compared to a DVD. The movie is more useful for a person with dementia and relatives.
Makes him John happy, brings back memories to him, stimulating and encouraging him to think. The movie helped me to spend a good half an hour with John.
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Very productive and not like last time. What music he liked etc. I know about his interests and his family […] I learned more about John. I think everyone residents should have a life story book or movie. Although the changes in the outcome measures for John are small in this phase of the project Table 3 , his QOL-AD score shows further improvement, remaining at a higher level than the original project baseline, and he scores zero on the depression scale.
His autobiographical memory scores are also higher than at the initial baseline. For John, it appears that the major changes in quality of life and autobiographical memory occurred during the life review process, but that the digital life storybook has helped to consolidate these changes. Nia was an year-old widow, who had been resident in the care home for 5 years, receiving regular visits from her daughter in law and other relatives.
She had a very active life until developing severe arthritis, which led her to being wheelchair bound. Quantitatively, the book did not produce any dramatic effect on Nia as shown in Table 3. However, she was very pleased with her book:. Oh dear me! Nia was very much interested in Welsh music and managed to list out her favorite music and songs for her movie.
Her daughter-in-law helped to collect some of the music and others were obtained from the Internet. The initial screening with background music and songs elicited a positive response, as she sang along with great feeling and with some movement. She explained the meaning of the songs to the researcher who was not able to understand the Welsh language :.
It is a good reminder; she can see her life in chronological order. Initially Nia agreed to record her own voice for narration. Nia was very satisfied with her movie but still suggested some further changes together with her daughter-in-law. When the researcher visited Nia after a few weeks and watched the movie again with her, she said:. I feel happy to watch it. I can see them all again! Just by sitting! Nice memories […] I feel happy […] very happy! The movie […] I like too but no one wants to show me!
I feel nice if you show to me! Only you show me the movie. For example:. The movie helps me to match her story that she used to tell me before. Now, her story makes more sense to me. The songs are very good for Nia. The voice from my daughter is brilliant!. The movie helps Nia to ask different questions every time she watches together with me. She likes both; the book makes her to look back forward and backward. They saw having the movie as a wonderful idea and felt every resident should have their own life story movie:.
I got to know more about Nia and her family even though I have cared for her ten years and know some family members, still learnt a lot from the movie. Whilst her QOL-AD score fell, her already low depression score reduced further; her autobiographical knowledge increased, whereas her memory for specific events reduced slightly. Compared with the overall project baseline, the main change was in her improved autobiographical knowledge, and this does appear to be associated specifically with the movie phase of the project.
Betty was a year-old widow who moved into residential care 3 years previously due to memory difficulties. She had a great interest in reading and crosswords and spent most of her time engaged in these two activities and less time in conversation with other residents, preferring to be alone. Betty was surprised with her book. The book triggered very useful conversations between Betty, her relatives, other residents, and care staff. Her life storybook stimulated her to recall further information about her life story.
She gained more points on all primary measures after having the book for 6 weeks. In particular, she improved greatly on AIS scores, reflecting her ability to recount memories of specific incidents in her life with rich content. Betty and her son were happy to convert the life storybook into a movie.touch.zaneapp.dev3.develag.com/map1.php
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Betty actively recalled all her favorite music and songs with assistance from her son. She decided to also include segments of her favorite radio program and to record her own voice to narrate her movie. Betty made some recommendations and changes mostly about matching the songs with pictures to two drafts of the movie before approving the third version. Betty and her son were as happy with the movie as they were with the book. Betty found the movie stimulating and it triggered many memories in her life.
She reports positive feelings whenever she watches her movie:. It reminds me of many things, brings back my memories. Makes me feel good. The movie makes me feel happy […] very triggering. Although Betty was excited and happy with her conventional life storybook, she reported that the movie was more stimulating and helped her relax more compared with her life storybook:. The movie, because I can see it and reminds me more and makes me very relaxed compared to the book.
The movie was quite enjoyable. It made me feel quite good. It made me think about the past. It helped me to remember things. The care home staff were helpful in showing the movie to Betty usually at night. They thought the movie helped them to understand Betty better and at the same time Betty was proud of her life:. I was very excited. Yes I was able to discuss it and I learned from it.
I learned even more about the client. The outcome measures show a mixed picture Table 3 , with a reduction in autobiographical memory for events, but improved quality of life, reduced depression and improved autobiographical knowledge following the exposure to the digital life storybook. All the measures show improvement compared with the initial project baseline assessment and the assessment prior to Betty receiving her conventional life storybook.
Ann was an year-old widow diagnosed with vascular dementia, resident in a care home for 3 years. She spent all her day in her room except for meal times, refusing to sit in the lounge and her main interest was reading and watching television. Ann was randomly assigned to the condition where a life storybook was developed through a life review process.
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Ann had a huge collection of pictures and other tangible items that covered her entire life. Ann responded well in all the life review sessions. She enjoyed talking about her life story and her pictures really stimulated her memories. The effect of the life review process on Ann is shown in Table 3. She improved on all measures, although memory for specific events showed relatively little change. Ann scored in the clinical range for depression at baseline assessment but her score was well below the clinical range at the end of the life review sessions. Ann was very happy and pleased with her book.
She spent time reading her own life storybook, sometimes engaging with two or three pages with pictures for 20—30 minutes. Ann was very happy to agree to take part in the digital life storybook project. Ann chose her favorite background music, songs, and clips for her life story movie. The drafted movie was screened to Ann, and she was pleased with the outcome.
The movie was finalized after three screenings and adjustments. Ann was happy with her movie but seldom watched the movie right through to the end. Instead she used the pause and rewind functions on the DVD player to focus on specific sections. Apart from being happy and enjoying watching her life story movie, Ann also felt that the movie stimulated her memories:.
I think so. I can see back my life stage by stage […] Wonderful […] I can see my life again […] I remember many things that I was never able to remember. The movie tells about me […] songs and ballet make me happy. Really good! I can sit and watch it! I wish I can have this from a long time ago! Both are the same! I like both. Sometimes I want to read and sometimes I want to watch. Mum would really enjoy seeing it. Nostalgic, happy, moved by the ballet section and some of the music. Emotional at times.
The care home staff felt the movie helped them to understand their client better as a person and helped them in the caring process:. A very good idea, which will assist staff in caring for the individual. This movie is very good, with a very high content of information. I found out things that I never knew about Ann and her life. I was excited to be able to learn more about Ann and her history. We only know about the reason they are admitted to the care home, and their medical history. We have very little or no information about our client. She reported no symptoms of depression at all at the final assessment.
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It is now well established that a person with dementia may enjoy taking part in many activities and be able to report a good quality of life. In the current study, we provide further evidence for the feasibility of using ICT-based reminiscence work. Previous studies have highlighted the positive psychosocial impact of life story work on cognition and emotion for people with dementia. The creation of a life storybook has been viewed positively by participants, relatives and care staff.
In this multiple single case study, the transformation of life storybooks into digital movie life storybooks has been validated. All the six people with dementia approached to take part agreed to do so, and this format has been well received by all participants and their relatives and care staff. All participants valued their own life story movie either more than their life storybook or at least equally. This study has also established that the person with dementia can contribute to the development of his or her life story movie.
This participatory design in the production of the movie, with the person with dementia fully directing his or her own life story movie is a strength of this study, and parallels with the development of a life storybook by engaging in a life review process. Qualitatively, the life story movie project produced similar effects to the life storybook project, with linked cognitive and emotional effects noted.
Feelings of sadness were expressed, and some tears shed, but these were seen as natural expressions of loss, mitigated by the overall narrative of the life story. Relatives had positive feelings from watching the movie, which often triggered their own memories, but relatives also felt pleasure in seeing the enjoyment of the person with dementia, in line with other reports of positive outcomes for families.
The development of the life story movie encouraged person-centered care in that it helped care staff to see their client as a person and to value their experience. The common theme emerging from care staff who took part in the interview and discussion was that they felt that they knew more about the person they care for. Depression scores although generally low show a similar picture. Memory for specific events and incidents the AIS score was only at its highest point at the final assessment for one participant, with this measure peaking after the life review process or after the conventional book had been received for different participants.
It is possible to hypothesize that this aspect of autobiographical memory — which comes closest to storytelling — is aided more by the shared experience of a life review process, or of showing a book to another person, whereas the movie may lend itself less to storytelling. The movie moves on at its own preset pace without the intervention of the pause button , and the moment for recounting an anecdote, a story around a particular event, may be lost.
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The movie may be better suited to reinforcing personal factual information, with its multiple presentation of the life story, hence the good results on the PSS scale. However, it is important to note that in each case, the final score exceeds the initial score on both subscales of autobiographical memory, despite some months having elapsed between these two time points. It is of course important not to give too much weight to changes of a few points on these scales, in a small series of participants.
Different assessors carried out the assessments at different points in time, potentially introducing other sources of variability, although all were trained to carry out the assessments, and the researcher PS carried out the baseline and final assessments personally. The study was not designed as a group study, and the group changes noted are to be viewed simply as a source of hypotheses for more rigorous, larger scale evaluations.
It does seem reasonable, from the six cases presented here, to hypothesize that the effects of a life story movie can reinforce and augment the effects of life review and conventional life storybooks, and that quality of life and autobiographical memory are appropriate outcome measures to consider. The sample size was too small to consider sex differences, but this would be relevant for larger scale evaluations. Other limitations include the ceiling effect on ratings of the quality of the relationship on the QCPR. This was apparent for a few people with dementia after having the life story movie.
However, the ceiling effect was most obvious on QCPR ratings by relatives whereby some had already achieved maximum scores when the conventional life storybook was presented. The study is limited also by the lack of a control group and by the lack of blinded postintervention assessments. The study sample were all people who had appreciated having a conventional life storybook; generalization to the whole population of people with dementia, some of whom may not wish to engage in reminiscence, is accordingly uncertain.
The study is not able to be informative regarding the effects of producing a digital life storybook without first producing a conventional book. The widespread use of touch screen tablet computers with people with dementia may simplify movie production, and mean that preparing a conventional book becomes less common. Listen to three words, the examiner said, write a sentence of your choice and then try to remember the three words.
The simplest of memory tests, and she had failed. Mapstone showed Sandy a line drawing and asked her to copy it, and then to draw it from memory 10 minutes later. He read her a list of words and had her recall as many as she could. He gave her two numbers and two letters and asked her to rearrange them in a particular order: low letter, high letter, low number, high number.
After three hours, Mapstone gave a preliminary diagnosis: amnestic mild cognitive impairment. This is not a good thing, Mapstone told her gently; most cases of amnestic M. When Sandy went back to the waiting room to meet Daryl, she was weeping uncontrollably. Between sobs, she explained the diagnosis and the inevitable decline on the horizon. Later that month, Sandy sat down in her upstairs study — painted a rich burgundy, as the rest of the house was, to make the sprawling old place feel cozy — and looked at her Mac desktop computer screen.
She had some trepidation about her plan to keep a journal of her own deterioration. And I sit with the dark, the blank. The prospect of mental decay was particularly painful for Sandy, whose idea of herself was intimately entwined with her ability to think deeply and originally. She once wondered aloud, for instance, where the line was between acceptable and unacceptable behavior between parents and their children. Would it automatically be wrong for a waitress who comes home exhausted to ask her young son to rub her feet?
Massage her back? Cuddle her? This time it was with a senior neurologist, Charles Duffy, to evaluate not only her cognitive abilities but also her mood and functional status. To her surprise, Duffy began to reminisce about his own life. He said that Sandy — who had spent her career examining and describing her own life with frank insight and clarity — might have a lot to contribute to the world just by experiencing her disease and giving others a glimpse of how it felt to have it.
Over the next several weeks, Sandy told those closest to her about her diagnosis and her plan to end her life before she became incapable of doing so. No one in that inner circle tried to talk her out of suicide; they knew how fierce she could be once her mind was made up. But when would that be? In the immediate aftermath of a diagnosis of amnestic M.
She needed to be engaged enough in her life to be able to end it. The doctor suggested that she start on Namenda, one of the few drugs approved by the F. Namenda works by increasing the level of glutamate in the brain and is thought to interfere with cell death. Researchers say that by the time someone exhibits mild cognitive impairment, the brain has been degenerating for years, and the drugs, even if they can slow the decline, are too little too late.
But doctors and patients hope that starting a drug soon after diagnosis might make a slight but tangible difference — slowing memory loss enough to forestall total dependence. Sandy quickly agreed, which surprised Daryl, because she usually avoided medication, other than a low dose of Prozac that she had been taking for years for depression. Something about her diagnosis had opened up an emotional vein in him.
She loved the tender, attentive husband who seemed to have emerged from the ruins of her diagnosis. It was a bit like the earliest days of their relationship, back in , when they met at Carnegie Tech in Pittsburgh. She was a senior psychology major; he was a new assistant professor of psychology. For a while, this worked well.
So well, in fact, that in they were featured in the inaugural issue of Ms. They were a slightly odd couple. Sandy was petite and not the least interested in fashion. He would also come to be known, later in his career, for some controversial experiments involving ESP.
Despite their good intentions, though, the marriage grew strained. In , when the children were 19 and 17, the Bems separated. After the split, Daryl acted on his attraction to men, a part of his sexuality that he never hid from Sandy. Yet he and Sandy never divorced, and he remained a frequent visitor to the big house in Cornell Heights where they raised their children.
He ate dinner there a few times a week and stayed involved in the lives of Emily and Jeremy — even more involved, in a way, than when he lived with them. By this point, a year and a half after her amnestic M. She had retired from Cornell, but she was doing well. She could still travel alone to familiar destinations, including Austin, Tex. Jeremy had temporarily moved back home to be with her. She saw a few psychotherapy patients.
After reading about it, Sandy thought pentobarbital was what she was looking for. It causes swift but not sudden unconsciousness and then a gradual slowing of the heart. In fact, she preferred having people know that she died by her own hand. Sandy had a special relationship with Bev, who was six years younger. A year before Sandy received her diagnosis, Bev was found to have Stage 4 ovarian cancer. The sisters had discussed the fact that Oregon law allows people with terminal illnesses to take their own lives.
It was weeks before she could get past that jealousy and take Bev into her confidence. On the phone that day, Sandy told Bev that pentobarbital was a controlled substance in the United States. She would have to write to one of the foreign suppliers listed in the book and hope for the best. Bev suggested an alternative: When the time came, she could request the drug from her own doctors in Oregon and then give it to Sandy. On Dec. Sandy went down to Austin, still able to make the familiar trip on her own. During the previous two years, her life had become more limited, but she continued to enjoy it.
She managed her day-to-day needs in part because she was such a creature of habit. She ate almost the same thing every day: a bagel for breakfast, a sandwich for lunch, a piece of salmon for dinner, mugs and mugs of tea throughout the day. Her freezer was always stuffed with pound bags of almonds, so she could roast them by the handful and sprinkle a few onto chocolate frozen yogurt for her nightly treat. By then, she was also taking a second F. It was impossible to tell without knowing what Sandy would have been like without them. Becoming a grandmother was never something Sandy had cared much about.
But when Felix was born, she was thrilled. He was in the neonatal intensive-care unit when she arrived in Austin; doctors had detected a bacterial infection in his urine and were administering antibiotics. Sandy sat in a rocking chair alongside the bassinet, and Emily handed the infant to her, naked except for his diaper, the IV port in his tiny hand capped off until the next infusion. She gazed down at her grandson, placid and perfect. She cooed and babbled. For weeks afterward, she talked about those first moments holding Felix.
As a parent in the s, Sandy turned every interaction with her children into a political act. Story time was a different experience with Felix. Sandy would cuddle with the baby and turn pages. Emily liked her mother this way, too. As a child, Emily wanted to wear her hair long and take ballet lessons; Sandy, ever vigilant about gender stereotypes, nudged her to cut her hair and play soccer instead. Emily thought that her mother was taking pleasure in life in a way that the old Sandy could not have anticipated — and she found herself hoping that the joy her mother took in Felix might make her reconsider her intention to end her life quite so soon.
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The old Sandy, who valued her rationality and her agency, had been clear that she would be unwilling to keep living when she could no longer articulate coherent thoughts. Ultimately, who should make the decision to die, the old Sandy or the new one? Sandy was appreciating her experiential interests — playing with Felix and working in her garden — but her critical interests were far more sophisticated and were moving out of her reach.
The new Sandy seemed to love being a grandmother, but it was important to take into account what the old Sandy would have wanted. Granting priority to critical interests is difficult even in a society that tries to do so. Nevertheless, it is rare for a doctor in the Netherlands to actually euthanize a patient who has dementia. In fact, one recent survey of Dutch physicians treating dementia patients with advance directives asking to be euthanized found not a single one who had carried out the request.
And of the 4, people who died in under the Dutch euthanasia act, just 97 of them, or 2 percent, had dementia. She seemed to say it partly for the sake of others, so they could get used to the idea and steel themselves against pain and grief when the time came. But it seemed that it was also for her own sake, to keep her plan at the forefront of her disintegrating mind.
Emily and Felix were living with Sandy at the time, so that Sandy could help with child care while Julius attended nursing school in Colorado. Jeremy had recently moved out. It drove Emily crazy to hear her mother continually bring up suicide. On the pad, she started to make calculations. What if she could persuade the center to charge less, because at her size she would need less medication?
And what if she received the treatment less frequently, maybe every three weeks? It was still a lot of money, but she had never touched her I. At the bottom of the page filled with numbers, she wrote to remind herself not to fret too much over the staggering dollar amount. Over the next months, Sandy and Daryl boarded a bus early in the morning every few weeks and rode down to Manhattan for the treatments.
In fact, he was surprised by how much herself Sandy could still be, even as she became less and less the formidable thinker he had always known. And they were still all there.