tag:theconversation.com,2011:/global/topics/dementia-sufferers-28927/articlesdementia sufferers – The Conversation2019-05-23T10:32:31Ztag:theconversation.com,2011:article/1137752019-05-23T10:32:31Z2019-05-23T10:32:31ZThe reality of caring for someone with dementia – stressful but rewarding too<figure><img src="https://images.theconversation.com/files/274349/original/file-20190514-60570-1s8mbif.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Pexels</span></span></figcaption></figure><p>Dementia is set to become one of the biggest global health challenges of our generation. In the UK alone there are around 850,000 people living with the disease and this figure is <a href="https://www.alzheimers.org.uk/about-us/news-and-media/facts-media">projected to more than double by 2051</a>. </p>
<p>Those of us who don’t develop dementia will probably end up caring for someone who does. According to Carers Trust, there are nearly 700,000 <a href="https://carers.org/key-facts-about-carers-and-people-they-care">family carers of people with dementia</a>. Without these unpaid carers, the UK economy would have to find <a href="https://www.alzheimers.org.uk/about-us/news-and-media/facts-media">£11 billion a year to cover the cost of dementia care</a>. This makes dementia carers an invaluable resource for both the people they care for and society as a whole. </p>
<p>As a psychologist, I am fascinated by the “hidden strength” that enables some carers to thrive. Something that researchers term “resilience” – which is <a href="https://www.cambridge.org/core/journals/reviews-in-clinical-gerontology/article/what-is-resilience-a-review-and-concept-analysis/B94C9BEAD7F43E1297EC9443DD24CA5C">defined as</a>: “the process of negotiating, managing and adapting to significant sources of stress or trauma”. </p>
<p><a href="https://www.ncbi.nlm.nih.gov/pubmed/25410637">In our earlier research</a> from 2014, we examined whether spousal dementia carers could achieve resilience and, if so, what resources they drew on to facilitate their capacity for resilience. We found that just under half of the carers were resilient under the definition given above. Research shows that resilient dementia carers are more likely to be protected from <a href="https://www.tandfonline.com/doi/abs/10.1080/13607863.2010.501063">depressive symptoms</a> – dementia carers are typically more depressed and have <a href="https://www.ncbi.nlm.nih.gov/pubmed/12825775">lower levels of well-being than non-dementia carers</a>. Resilient carers are also less likely to admit their loved one into <a href="https://www.ncbi.nlm.nih.gov/pubmed/17284556">residential care prematurely</a>. </p>
<h2>Strength and courage</h2>
<p>As part of our research, Mrs Wi, a 69 year old woman who had been caring for her husband for four years, explained her role as “a contract you would never sign up for”. But despite acknowledging the burden of care-giving, Mrs Wi accepted her husband’s diagnosis and put measures in place so that he could continue to live independently: “He used to go out every Monday and every Friday playing snooker and that hasn’t stopped … I’ve told his friends right from the beginning about [him] having Alzheimer’s”. </p>
<p>Another carer, Mrs C, showed no signs of distress and adopted a positive outlook throughout the nine years she had been caring. With reference to her husband’s diagnosis, Mrs C said: “I tried to be positive and say all they’ve done is give it a name. You’re still the same person you were yesterday.” </p>
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<img alt="" src="https://images.theconversation.com/files/274347/original/file-20190514-60545-166f6lq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/274347/original/file-20190514-60545-166f6lq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/274347/original/file-20190514-60545-166f6lq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/274347/original/file-20190514-60545-166f6lq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/274347/original/file-20190514-60545-166f6lq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/274347/original/file-20190514-60545-166f6lq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/274347/original/file-20190514-60545-166f6lq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Life can still be sweet, even with dementia.</span>
<span class="attribution"><span class="source">Pixabay</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
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<p>I interviewed the carers twice between 2011 and 2014. During that time a lot had changed. All reported deteriorating health of their loved one, some had admitted their loved one into residential care and others had been bereaved. Some had been through both. And yet more people had become resilient than not. <a href="https://www.ncbi.nlm.nih.gov/pubmed/30449140">This suggests that resilience is not fixed</a> – carers can become resilient despite the stress associated with care-giving.</p>
<h2>Singing and laughing</h2>
<p>It is clear from our research that humour and positivity are important facilitators of resilience, as Mr G explains: “I laugh and I sing and she laughs … my neighbour said it’s a good job we’ve got a detached house”. Social support is also important, <a href="https://www.ncbi.nlm.nih.gov/pubmed/27438380">especially from friends</a>: “We are like family … we exchange sad stories or glad stories every week … I think that’s why I’m so stable because I talk to so many people who are in the same boat” (Mrs L). </p>
<p>Carers who engaged in services that enabled them to “give back” were also more likely to be resilient: “I do voluntary work … I’m a carer talking to the carers … I know it sounds daft but it’s a break away, its different, and yet you’re helping others” (Mrs Wi). Family support was valued by all carers who had access to it, but only on their own terms, so as not to relinquish feelings of <a href="https://www.ncbi.nlm.nih.gov/pubmed/25410637">independence and autonomy</a>. </p>
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<img alt="" src="https://images.theconversation.com/files/274345/original/file-20190514-60563-n820y4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/274345/original/file-20190514-60563-n820y4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/274345/original/file-20190514-60563-n820y4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/274345/original/file-20190514-60563-n820y4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/274345/original/file-20190514-60563-n820y4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/274345/original/file-20190514-60563-n820y4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/274345/original/file-20190514-60563-n820y4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">There are ways to make life easier and more enjoyable for a person with dementia.</span>
<span class="attribution"><a class="source" href="https://pixabay.com/photos/women-friends-friendship-helping-1577910/">pixabay</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
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<p>Of course, no one would deny that dementia care is stressful, but it’s clear that many carers have successfully adapted to their role. They draw on their own individual characteristics and resources within their immediate and wider social environment to build their capacity for resilience. </p>
<p>This is important, because it shows that people can live well as dementia carers. Current research and dementia care services are <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/hsc.12115">typically problem-focused</a>, and designed to alleviate burden in carers. But by promoting resilience and the positive and rewarding aspects of care-giving, we can help to improve the day-to-day lives of both carers and the people they care for.</p><img src="https://counter.theconversation.com/content/113775/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Warren Donnellan does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Some carers actually thrive in the face of dementia, here’s why.Warren Donnellan, Lecturer, University of LiverpoolLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1068802018-11-15T10:22:50Z2018-11-15T10:22:50ZHow to help people with dementia retain the power of choice<figure><img src="https://images.theconversation.com/files/245419/original/file-20181113-194500-otb2fb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Which pair?</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/senior-hispanic-man-suffering-dementia-trying-402621004?src=FYrXtETv_t-V_HIGtP1UkA-1-24">Monkey Business Images/Shutterstock</a></span></figcaption></figure><p>Deterioration in the ability to produce complex speech or understand what people are asking, can make it difficult for people with dementia to make choices in conventional ways. It can be simple things like deciding which clothes to wear, or what to have for dinner. But when a person is in the more advanced stages of dementia, and may not be able to speak at all, it can be difficult for those caring for them to work out what their preferences would be. </p>
<p>To help the <a href="https://www.alzheimers.org.uk/about-us/policy-and-influencing/dementia-uk-report">estimated 280,000 people with dementia</a> who are living in UK care homes, family members are often asked what their loved ones would prefer and notes are made by staff. But <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1868818/">we know that</a> people’s preferences can change, sometimes on a daily basis, and are hard to predict even by people who know them really well. </p>
<p>Take the example of Mrs Jones. Care workers know that she likes both tea and coffee, but that she prefers tea. If Mrs Jones finds it difficult to tell them what she wants, how will they know that today is the day that Mrs Jones fancies a coffee?</p>
<p><a href="https://www.ncbi.nlm.nih.gov/pubmed/24730052">Behavioural researchers have found</a> that one way to figure out what a person would like is to measure how they respond when provided with different options at the same time. For example, to find out whether a person prefers a biscuit or a scone, the two treats are presented together for the person to choose.</p>
<p>As the person making the choice is unable to speak, physical behaviours such as reaching, touching, and picking up the item are watched to find out which they would like. Studies which use this method are usually done with people with dementia in their care home, and tailored to the individual taking part. While the researchers can find out what works best, it also means that people with dementia benefit directly from taking part in the study. Staff are also shown how to find out preferences – leading to immediate improvements in care. </p>
<p>Though it seems like a simple thing to put into practice, this “choice” method is not currently part of the UK care system. However, we have been testing to see whether it could be used in all care homes, to give everyone with dementia more choice in a place where it has traditionally been limited. By observing what people do rather than what they say, care staff can get a more objective idea of what people like, measure their preferences daily, track how they change, and – most importantly – give people with dementia and communication issues more of a voice in their daily lives.</p>
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<span class="caption">shutterstock.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/senior-lady-sitting-table-her-home-442488778?src=TMb22GdZ0OXmm7amNN_-FA-1-53">Photographee.eu/Shutterstock</a></span>
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<p>Our work forms part of the first UK project of its kind in the field of behavioural gerontology. The preferences research is part of a series of studies all focused on using behaviour analysis to help improve the quality of life of people with dementia. In addition, students on Bangor University’s <a href="https://www.bangor.ac.uk/courses/postgraduate/applied-behaviour-analysis-msc-pgdip-pgcert">applied behaviour analysis programme</a> are trained to specialise in this approach with older adults. </p>
<p>Though the project itself is due to go on for another year, we have already <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3545508/">confirmed previous findings</a> from US-based care home studies which showed that people with dementia prefer activities over food items when given a choice between them. For example, we found that people chose activities such as jigsaws, crosswords, and crochet over treats such as custard tarts and pork pies.</p>
<p>This might be because one risk for people with dementia in long-term care is that they can spend <a href="https://www.ncbi.nlm.nih.gov/pubmed/8056948">a lot of time unengaged</a>. It can be difficult to find lots of meaningful activities for care settings, and opportunities for conversation can be reduced. So activities become more valuable because they give people something to do and to talk about with other people, while food might become less valuable due to sensory changes associated with dementia such as <a href="https://www.ncbi.nlm.nih.gov/pubmed/2280803">changes in ability to taste and swallow</a>. </p>
<p>Putting this into practice, we now know that if a person with dementia is to be given food and activity choices, they should be done separately – rather than at the same time, like the biscuit and scone example – as preference for taking part in an activity might overshadow a food choice. In the long run, this means that staff don’t learn what people’s food preferences are, too.</p>
<p>For the next stage of our research, we are going to work with people with developmental disabilities (for example, Down Syndrome) who develop dementia. People with developmental disabilities often develop dementia at a younger age, and <a href="https://doi.org/10.1016/j.ridd.2013.02.021">are more likely</a> to develop it than those who do not have a developmental disability. They are often diagnosed late, too, due to “<a href="https://www.ncbi.nlm.nih.gov/pubmed/7102729">diagnostic overshadowing</a>”, where changes in behaviour are attributed to their disability rather than dementia. </p>
<p><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1284063/">Previous research has found</a> that people with developmental disabilities will often choose food over activities when a choice between the two is offered (the opposite of people with dementia). However, no one has yet looked at whether this preference shifts when people with developmental disabilities develop dementia. If we know how preferences change, we can ensure that care settings tailor their support. </p>
<p>We all value having choices, and our work is focused on evaluating and developing ways to ensure that people with dementia and developmental disabilities continue to be offered choices, even in the smallest of ways.</p><img src="https://counter.theconversation.com/content/106880/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A simple method could vastly improve the quality of life of those with dementia.Rebecca Sharp, Senior Lecturer in Psychology, Bangor UniversityZoe Lucock, PhD Researcher, Bangor UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/682532016-11-29T09:58:32Z2016-11-29T09:58:32ZHere’s why some Dutch university students are living in nursing homes<figure><img src="https://images.theconversation.com/files/145575/original/image-20161111-9048-12wzua0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">shutterstock</span></span></figcaption></figure><p>In today’s society both young and old increasingly find themselves living in a bubble of like-minded and similar-aged peers. This is especially true of university students who leave home at 18 to live with people of the same age – who have quite often had similar life experiences. </p>
<p>Given this, the report that a <a href="http://www.citylab.com/housing/2015/10/the-nursing-home-thats-also-a-dorm/408424/">Dutch nursing home</a> has established a programme providing free rent to university students in exchange for 30 hours a month of their time “acting as neighbours” with their aged residents is unusual.</p>
<p>The programme has seen students in their early twenties sharing lives with residents in their eighties and nineties. As part of their volunteer agreement, the students also spend time teaching residents new skills – like how to email, use social media, Skype, and even graffiti art.</p>
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<h2>Reducing loneliness</h2>
<p>The incentive behind Humanitas Deventer’s “exchange” programme is the <a href="http://www.telegraph.co.uk/news/health/elder/9953019/Toll-of-loneliness-isolation-increases-risk-of-death-study-finds.html">research base</a> that shows that reducing loneliness and social isolation improves well-being and extends life expectancy in the elderly.</p>
<p>And though research on the impact on students seems yet to be explored, from my own experience of running a <a href="http://readingproject.exeter.ac.uk/">similar project at the University of Exeter</a>, I know that it is overwhelmingly positive – giving young people a sense of connection with older generations, and significantly increasing the likelihood that they will continue to volunteer after university. </p>
<p>Since 2011 student volunteers from the university’s Department of English and Film donate their time to bring conversation, literature, and friendship to the residents of over ten residential care homes across the city. And since the project’s inception it is estimated that around 250 active volunteers have reached over 500 elderly residents – at least half of whom have dementia. </p>
<h2>Reading between the lines</h2>
<p><a href="http://readingproject.exeter.ac.uk/">The Care Homes Reading Project</a> draws upon the natural skill set of its target volunteer community – which includes a love of reading and an understanding of the power of literature to impact lives positively. </p>
<p><a href="http://www.bbc.co.uk/news/health-22775438">Research</a> shows reading poetry with dementia sufferers – many who learned poetry by heart when they were younger – brings comfort and reassurance through hearing and reciting familiar verses. </p>
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<img alt="" src="https://images.theconversation.com/files/145580/original/image-20161111-9077-4f5yo9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/145580/original/image-20161111-9077-4f5yo9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/145580/original/image-20161111-9077-4f5yo9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/145580/original/image-20161111-9077-4f5yo9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/145580/original/image-20161111-9077-4f5yo9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/145580/original/image-20161111-9077-4f5yo9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/145580/original/image-20161111-9077-4f5yo9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Young at heart.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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<p>Rhythm and rhyme bring a sense of order and predictability and, as this project has seen first hand, poetry can spark memories previously unknown to carers and even to family members. </p>
<p>Residents regain a sense of themselves as “a whole person, past and present”, as one care home manager put it. And in one brilliant example, a 100-year-old resident found a shared play-reading session with one student volunteer revived long-buried leading-lady speeches once delivered when she was an actress.</p>
<h2>Shared passions</h2>
<p>Our experience in Exeter has shown that students can help to supplement the quality of care in homes by providing relief for overstretched staff. And residents typically respond with enthusiasm to the novelty of younger visitors and to the creativity students bring to their sessions. </p>
<p>Residents are also encouraged to be creative by writing their own poetry. And English students offer expertise in selecting and discussing appropriate literature, and show sensitivity to the emotional response that language can have.</p>
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<img alt="" src="https://images.theconversation.com/files/145578/original/image-20161111-9065-7bbgto.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/145578/original/image-20161111-9065-7bbgto.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/145578/original/image-20161111-9065-7bbgto.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/145578/original/image-20161111-9065-7bbgto.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/145578/original/image-20161111-9065-7bbgto.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/145578/original/image-20161111-9065-7bbgto.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/145578/original/image-20161111-9065-7bbgto.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Reading with dementia sufferers brings comfort and reassurance.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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<p>Many students find the visits often evolve into wider-ranging conversations and discoveries of other activities that bring happiness and interest to the residents. One student now not only visits a care home to read but also to hold ballet classes. And in the same home other residents have made use of students’ language skills, holding French and German conversation sessions. </p>
<p>Volunteer students look forward to their weekly visits. They find it is a space they can share poetry and stories – away from the demands of assessments. And many have said that it reminds them why they chose to study English literature in the first place. </p>
<p>Students also learn how past generations read the very same poems in surprisingly different ways. They see first hand how literature stays with us throughout life. And how the experience of shared reading helps to overcome the social and ideological disconnect between generations that plagues contemporary society.</p>
<h2>Breaking boundaries</h2>
<p>The moral health of a society is plainly visible in the way it treats its most vulnerable members, especially the aged. The government <a href="https://consult.education.gov.uk/school-frameworks/schools-that-work-for-everyone/supporting_documents/SCHOOLS%20THAT%20WORK%20FOR%20EVERYONE%20%20FINAL.pdf">recently announced</a> that universities will be required to demonstrate their commitment to enhancing social mobility by establishing or supporting schools, so why not also mobilise the resources universities offer to enhance opportunity and well-being at the other end of life’s spectrum? </p>
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<img alt="" src="https://images.theconversation.com/files/145581/original/image-20161111-9093-ktvw6o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/145581/original/image-20161111-9093-ktvw6o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/145581/original/image-20161111-9093-ktvw6o.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/145581/original/image-20161111-9093-ktvw6o.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/145581/original/image-20161111-9093-ktvw6o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/145581/original/image-20161111-9093-ktvw6o.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/145581/original/image-20161111-9093-ktvw6o.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Students could use spare time to help the elderly.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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<p>The largest resource universities possess is the student body – a force with time, energy, few domestic responsibilities, and a desire to use their developing skills to make a positive difference in the local community. </p>
<p>Our reading project in care homes shows how both young and old can benefit from this type of arrangement. So just like the Dutch, it would be great if Universities in the UK could also look to reduce the cost of tuition fees or accommodation in exchange for meaningful social investment to get more people young and old spending time together.</p><img src="https://counter.theconversation.com/content/68253/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Johanna Harris does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>What students can learn from time spent in care homes.Johanna Harris, Senior Lecturer in English, University of ExeterLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/659972016-09-29T00:51:16Z2016-09-29T00:51:16ZWhy dementia burden may be less than feared<figure><img src="https://images.theconversation.com/files/139488/original/image-20160927-30460-l6xfre.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Happy-looking seniors via Shutterstock.</span> <span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-121062757/stock-photo-romantic-senior-couple-hugging-on-beach.html?src=heuIWn2OHLL0CQadN9Um9w-1-11">From www.shutterstock.com</a></span></figcaption></figure><p>It is a truism that aging of populations will result in large and potentially unmanageable increases in the number of older adults with dementia. </p>
<p>Michael D. Hurd, a senior researcher with RAND, and colleagues estimated the present annual financial burden of dementia care in the United States is about <a href="http://www.nejm.org/doi/full/10.1056/NEJMc1305541">US$200 billion</a>. Extrapolation of historic dementia rates among older adults project intimidating rises in dementia cases and costs. </p>
<p>Recent epidemiological data, however, indicate a more encouraging picture. </p>
<p>Results from the United Kingdom Cognitive Function and Aging Studies (CFAS) indicate an approximate <a href="http://www.sciencedirect.com/science/article/pii/S0140673613615706;%20http://www.nature.com/articles/ncomms11398">20-25 percent decline</a> in age-specific prevalence and incidence of dementia over the past generation. Data from the U.S. Framingham Heart Study indicate a remarkable 40 percent <a href="http://www.nejm.org/doi/full/10.1056/NEJMc1604823">decline in age-specific incidence</a> of dementia over the past few decades. </p>
<p>These results are consistent with data from other <a href="http://www.nejm.org/doi/full/10.1056/NEJMp1311405">population-based</a> <a href="https://theconversation.com/despite-the-headlines-dementia-epidemic-may-not-actually-be-getting-worse-46415">studies</a>. CFAS investigators estimate that declining dementia incidence may lead to a plateau in the annual number of new cases of people with dementia.</p>
<p>Why the improvements? As a neurologist and a health policy expert who have studied the disease and the implications on our health care system, we have found two major factors in the declining dementia rates. If the factors continue, the burden of dementia in the future may be less than previously thought.</p>
<h2>Better treatment, prevention of diseases that lead to dementia</h2>
<p>A conventional medical distinction is between <a href="http://www.neurodegenerationresearch.eu/about/what/">neurodegenerative dementias</a> and <a href="https://www.alz.org/dementia/vascular-dementia-symptoms.asp">vascular dementias</a>. Neurodegenerative dementia, such as Alzheimer’s disease, results from primary brain degeneration. Vascular dementias, however, result from disease in the vascular system. </p>
<p>One of the two reasons that dementias may not be as prevalent in the future is better control of <a href="http://www.vascularcures.org/about-vascular-disease">vascular disease</a> risk factors. Vascular disease refers to abnormal functioning of the body’s systems of veins and arteries, such as hardening or narrowing of the arteries. Smoking, high cholesterol and poor diet contribute to these conditions. </p>
<p>The brains of most demented patients exhibit combinations of neurodegenerative pathologies and vascular injury. It is likely there is a cumulative and interacting effect of these different pathologies. </p>
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<img alt="" src="https://images.theconversation.com/files/139489/original/image-20160927-30448-z9gpu2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/139489/original/image-20160927-30448-z9gpu2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=397&fit=crop&dpr=1 600w, https://images.theconversation.com/files/139489/original/image-20160927-30448-z9gpu2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=397&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/139489/original/image-20160927-30448-z9gpu2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=397&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/139489/original/image-20160927-30448-z9gpu2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=499&fit=crop&dpr=1 754w, https://images.theconversation.com/files/139489/original/image-20160927-30448-z9gpu2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=499&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/139489/original/image-20160927-30448-z9gpu2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=499&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Managing blood pressure is important. Via Shutterstock.</span>
<span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-208266067/stock-photo-blood-pressure-monitor-with-vegetables-pressure-gauge-with-vegetables-the-concept-shows-that-healthy-food-can-keep-the-body-in-good-condition.html?src=PDp5lP88dEif8-gMQwUOTQ-1-19">from www.shutterstock.com</a></span>
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<p>Better control of vascular disease risk factors, such as tobacco abuse, hypertension and high cholesterol, led to <a href="https://www.cdc.gov/mmwr/preview/mmwrhtml/mm4830a1.htm">declining rates of heart disease and stroke</a>. Declining dementia incidence is a likely further beneficial consequence.</p>
<p>A second plausible causal factor is the rising level of education in both low- and high-income nations over the course of the 20th century. Higher education levels are associated with <a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0038268">lower dementia risk</a>. </p>
<p>In the <a href="http://www.nejm.org/doi/full/10.1056/NEJMoa1504327?rss=searchAndBrowse#t=article">Framingham cohort</a>, decline in dementia incidence was seen only in individuals with at least a high school education. The education effect may have multiple mediators. </p>
<h2>Education making a difference, too</h2>
<p><a href="http://www.nber.org/digest/mar07/w12352.html">Higher education levels </a>are associated with higher incomes, better general health, and healthier behaviors, including better control of vascular disease risk factors. </p>
<p>Yet another important factor could be education’s role in the brain’s capacity to compensate for injury. It has been suggested that education can enhance so-called <a href="http://www.cumc.columbia.edu/dept/sergievsky/pdfs/CogResTheory.pdf">“cognitive reserve”</a> – brain capacity to compensate for injury. While the validity of the cognitive reserve concept is difficult to demonstrate directly, indirect evidence supports this attractive idea. </p>
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<img alt="" src="https://images.theconversation.com/files/139491/original/image-20160927-30441-ak5r1w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/139491/original/image-20160927-30441-ak5r1w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/139491/original/image-20160927-30441-ak5r1w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/139491/original/image-20160927-30441-ak5r1w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/139491/original/image-20160927-30441-ak5r1w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/139491/original/image-20160927-30441-ak5r1w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/139491/original/image-20160927-30441-ak5r1w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Early childhood education could make a difference. Via Shutterstock.</span>
<span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-303435608/stock-photo-baby-girl-with-book-sitting-on-white-background.html?src=61V2dUiakhmYLabZjdC_rQ-1-10">from www.shutterstock.com</a></span>
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<p>How much education is required and when education is most effective is unknown. <a href="http://science.sciencemag.org/content/343/6178/1478.long">James Heckman</a>, a Nobel Prize winner in economics, argues persuasively that high-quality early childhood education has multiple benefits, including improved midlife health and health behaviors. </p>
<p>The cognitive reserve concept suggests that education benefits should be greatest when the brain is most plastic, suggesting a long-lasting benefit of early childhood education. </p>
<h2>Obesity, diabetes could threaten the gains</h2>
<p>Counter to these encouraging trends is the rising tide of obesity and diabetes. Both these disorders are significant dementia risk factors.<br>
Medical interventions to reduce diabetes complications significantly reduce major vascular disease complications in diabetes, including stroke. This suggests that appropriate diabetes treatments may mitigate the effects of increased prevalence of diabetes on dementia risk. </p>
<p>In data from the Health & Retirement Study, a large representative population-based study of older Americans, one of us (KML) found declining age-specific rates of dementia, despite <a href="http://www.sciencedirect.com/science/article/pii/S155252600800023X">rising rates</a> of diabetes and obesity. </p>
<p>Much of the current emphasis in dementia research is on <a href="http://science.sciencemag.org/content/353/6302/872.long">developing therapies</a> aimed at reducing the impact of neurodegenerative pathologies. The epidemiologic evidence indicating declining dementia incidence and prevalence rates indicates that we have some effective preventive approaches. </p>
<p>These results may be particularly important for developing nations. </p>
<p>While dementia is usually thought of as a major public health problem in high-income nations, recent projections indicate that the greatest impact of increasing dementia prevalence will occur in <a href="http://www.sciencedirect.com/science/article/pii/S1552526012025319">low- and middle-income nations</a>. These countries have rising life expectancy, increasingly Westernized lifestyles and health care systems unprepared to handle the burden of chronic disease. </p>
<p>They are projected to experience the greatest increases in dementias. These nations may benefit the most from preventive strategies based on improving education and reducing vascular risk factors. </p>
<p>Even in the U.S., it is unlikely we’ve maximized the benefits of controlling vascular disease risk factors and making high-quality education available to all. Substantial fractions of Americans lack access to good primary care, and the performance of many American school systems is poor. Relatively modest investments in these domains may yield considerable benefits late in life.</p><img src="https://counter.theconversation.com/content/65997/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kenneth Langa receives funding from the National Institute on Aging. He is a member of the non-profit group, Researchers Against Alzheimer's.</span></em></p><p class="fine-print"><em><span>Roger L. Albin does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Improvements in education and vascular health are likely partly responsible for a sharp decline in dementia over the past few decades. The trend may continue, if we also address obesity and diabetes.Roger L. Albin, Professor of Neurology, University of MichiganKenneth Langa, Professor of Medicine and Health Policy, University of MichiganLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/618052016-08-08T20:08:16Z2016-08-08T20:08:16ZAnswering the same questions over and over: how to talk to people with dementia<figure><img src="https://images.theconversation.com/files/128955/original/image-20160701-30627-1bzhv05.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Hearing the same questions over and over again can be frustrating, but it's important you stay calm – they're not trying to annoy you. </span> <span class="attribution"><span class="source">from www.shutterstock.com.au</span></span></figcaption></figure><p>If you care for or know someone with dementia, they’ve probably asked you “what are we doing today?”, “who are you?”, or “when are we going home?” And often, frustratingly, they forget the answer quickly and ask the question again … and again … and again. </p>
<p>Anyone asked the same question over and over will eventually respond impatiently, which is not good for the person with dementia, or their carer’s stress levels.</p>
<p>Imagine a husband is in the early stages of dementia, and every day he repeatedly asks his wife “what are we doing today?”</p>
<p>Wife: we have a doctor’s appointment at 1:30pm.</p>
<p>Husband: (ten minutes later) hey, what are we doing today?</p>
<p>Wife: I just told you, we have a doctor’s appointment at 1:30pm.</p>
<p>Husband: (five minutes later) what are we doing today?</p>
<p>Wife: (getting frustrated now, and slightly raising her voice) what did I just tell you? We are going to the doctor at 1:30!</p>
<p>Husband: (getting upset at his wife’s tone) Well how am I supposed to know? I don’t remember you telling me that.</p>
<p>The wife will feel guilty for getting angry with her husband. She knows it’s not his fault but finds it so frustrating to have to respond repeatedly to the same questions over and over.</p>
<p>Imagine a mother in the moderate to severe stages of dementia, cared for by her daughter. Sometimes in the evening, the mother asks her daughter “when are we going home?”</p>
<p>Daughter: we are at home, Mum.</p>
<p>Mother: I want to go home now, when are we going home?</p>
<p>Daughter: Mum, we’re already at home. Look, there’s a photo of you and Dad on the mantelpiece there.</p>
<p>Mother: (sounding more confused and starting to become agitated) I don’t know how that got there. I’m tired now; I’m ready to go home. When are we going home?</p>
<p>Daughter: (becoming frustrated) Mum, I don’t know how I can make you understand. Look, here are all your things (pointing around the room). You are at home already!</p>
<p>Mother: Don’t yell at me, just take me home! I don’t want to be here!</p>
<h2>What is the best way to respond?</h2>
<p>First, it’s important to stay calm. If you get upset, the person with dementia may too. Remind yourself that the person isn’t asking the questions to annoy you, but because they have a condition that causes damage to their brain.</p>
<p>Try to understand if there is an underlying need the person is expressing through their question. Are they anxious, worried, confused, hungry, tired?</p>
<p>You should respond in a way that works with the person’s current reality and frame of mind. For example, if the person believes their long-deceased husband is still alive, asking them a question such as “what does your husband do for work?” is more likely to calm the person down than if you remind them he has passed away. </p>
<p>It’s also good to use the environment to support your answer. For instance, in the first example above, the wife could buy a calendar, a clock, and a whiteboard, and set them up in the kitchen where they will be seen by her husband every morning. Appointments can be written on the calendar, and the whiteboard could be updated with the day, date, and schedule for the day.</p>
<p>When her husband asks what they’re doing today she can point to the whiteboard. With practice, checking the whiteboard could become part of their morning routine. Although people with dementia have memory problems, they are often still able to learn new habits with repetition. Sometimes he will still probably ask what they’re doing for the day, but she can calmly direct him to look at the whiteboard.</p>
<p>In the second example, the daughter has to try to put herself in her mother’s shoes – her mother doesn’t recognise the house is her home. Maybe she remembers “home” as where she lived as a child.</p>
<p>One option is to try distraction. When the person with dementia asks when they’re going home, offer them a distraction, like a cup of tea. If they are still concerned, tell them it’s time to go home and take them for a drive. Drive around the neighbourhood pointing out familiar landmarks, then as you’re making your way back home, tell them you’re almost there.</p>
<p>Repeating the same questions is often a sign that the person with dementia is trying to tell us something or that they need some reassurance. Sometimes just answering their questions is enough, and at other times we may need to step into their world for a while.</p><img src="https://counter.theconversation.com/content/61805/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Claire M O'Connor receives funding from an Alzheimer's Association Dementia Research Foundation PhD Scholarship and the Mary Frances Stephens Scholarship from the Faculty of Health Sciences at the University of Sydney. </span></em></p><p class="fine-print"><em><span>Lee-Fay Low receives funding from the NHMRC, and aged care organisations. She has previously received funding from Alzheimer's Australia, the Department of Health and Ageing and NSW Health. </span></em></p>If you care for or know someone with dementia, they’ve probably asked you “what are we doing today?” “who are you?” or “when are we going home?”Claire MC O'Connor, Research Occupational Therapist and PhD Candidate, University of SydneyLee-Fay Low, A/Prof in Ageing and Health, University of SydneyLicensed as Creative Commons – attribution, no derivatives.