There are many ways to get involved with research at Oxford Health NHS Foundation Trust.<\/p>\n
We are hugely grateful to all those people who take part in our research and want to give participants the opportunity to be updated on the outcomes of the studies they have been involved with.<\/p>\n
To do this we are building a library of short articles summarising completed studies and their outcomes (see below).<\/p>\n
This resource will be added to regularly over the coming months so please check back later for further updates.<\/p>\n
People with Young Onset Dementia (YOD) can be hesitant to engage with online peer support. This work aims to explore (1) why people are hesitant to engage in online peer support, (2) how to get more people involved in online peer support, and (3) what makes online peer support work well. Nine interviews with people with YOD were conducted on MS Teams. Participants were recruited through purposive sampling. Data were analysed thematically. Reasons for being hesitant to engage with online peer support include being unsure what to expect and concerns about seeing others in more advanced stages of dementia. Additionally, it can be difficult to identify groups that suit one\u2019s needs and interests. Group facilitators of online peer support groups should provide a detailed description of their group so that people can better assess whether the group would suit them. The insights obtained from this study will be used to develop a Best Practice Guidance on online peer support for people with YOD. Moreover, the findings can be useful for further research exploring how to support people with dementia in general in accessing online health and social care services.<\/p>\n
Read the full article<\/a>: Published 2024,\u00a0International Journal of Environmental Research and Public Health<\/em><\/p>\n<\/div>\n <\/details>\n Social connection is a basic human need and is essential to quality of life. It is associated with better mental and physical health outcomes for long-term care (LTC) home residents and is a key aspect of quality of care and person-centred care. There are considerations for LTC homes that may present obstacles to and opportunities for social connection. It is therefore important to understand what restricts or enables good social connection in LTC homes, to guide better quality care and future interventions in this population. This qualitative study aims to identify barriers and facilitators to social connection for LTC residents.<\/p>\n Read the full article<\/a>: Published 2024,\u00a0BMC Geriatrics\u00a0<\/em><\/p>\n<\/div>\n <\/details>\n How old do carers of people with dementia feel and why? <\/strong><\/p>\n Most adults feel younger than their actual age. Few adults feel as old as they actually are, or older. Those who feel older than their actual age generally experience low mood and poor health. We wondered how carers of people with dementia feel about their age.<\/p>\n We wanted to find out:<\/p>\n To answer these questions researchers spoke with 1,247 carers of people with dementia.<\/p>\n One in four carers felt older than their actual age. These carers had lower mood and poorer health. They were spending more hours helping the person with dementia and felt more stressed.<\/p>\n Asking carers what age they feel can help identify those who are doing less well.<\/p>\n Read the full article<\/a>:<\/strong> Published January 2024, Frontiers in Psychology Journal<\/em><\/p>\n<\/div>\n <\/details>\n The study investigated whether a talking therapy, called Problem Adaptation Therapy, could improve the symptoms of depression in people with Alzheimer\u2019s disease.<\/p>\n A total of 336 people with Alzheimer\u2019s disease and those who help to look after them participated in the study. Half were randomly allocated to receive up to 8 sessions of Problem Adaptation Therapy and half were allocated to receive just their usual care and to act as a comparison for the Therapy. Everyone in the study was followed for 12 months and asked to complete tests of their mood and quality of life.<\/p>\n The Study showed that people who received the Problem Adaptation Therapy showed a small improvement in their symptoms of depression and overall quality of life compared with those who did not have the therapy. Unfortunately, these benefits were only fairly short-lived.<\/p>\n We will use the results of the Study to develop a longer form of Problem Adaptation Therapy that can be used to support people with dementia and their families and to improve symptoms of depression.<\/p>\n Thank you again for helping by your participation in the research. Without studies like PATHFINDER it would not be possible to develop better ways to help and treat people with dementia and to make their lives and those of the people who love and support them better.<\/p>\n Read the full article<\/a>:<\/strong> Published March 2024, Journal of Alzheimer\u2019s Association<\/em><\/p>\n<\/div>\n <\/details>\n What difference do health problems make to carers of people with dementia?<\/strong><\/p>\n Many older people support a spouse who is living with dementia. Caring in this way can be demanding, especially when carers have health problems themselves.<\/p>\n We wanted to find out more about these health problems and how they change over time. We also wanted to find out whether carers who are in poor health feel more stressed or have less contact with friends and family.<\/p>\n We spoke to over 900 people caring for spouses with dementia at home in Great Britain three times over a two-year period. They told us about their health, how stressed they felt, and how much contact they had with family and friends.<\/p>\n Most carers had one or two health conditions. This was the same for men and women, but older carers and carers who had less education had more health problems.<\/p>\n Having more health conditions went along with feeling more stressed. Over time, it meant people had less contact with friends and family.<\/p>\n Taking care of your own health while looking after a person with dementia can be challenging, but it is important for carers to look after their own health needs, and for health professionals to check up on carers\u2019 health.<\/p>\n Read the full article<\/a>:<\/strong> Published February 2024, BMC Geriatrics Journal<\/em><\/p>\n<\/div>\n <\/details>\n Music therapy has been found to be an effective intervention for persons with dementia (PWD) and their primary caregivers (PC), yet the implementation of musical strategies to improve daily care in the home environment requires further exploration. This study developed and examined a home-based music therapy (HBMT) work model that offers weekly joint music therapy sessions, and additional bi-weekly phone-counseling sessions with the PC. This was followed by an additional 12-week support period that included 3 therapy sessions and 3 phone counseling sessions once every other fortnight, so that the same type of session occurred at a frequency of once a month. Participants were five couples (PWD\u2009+\u2009spouse as PC) who live in their home. Findings based on the qualitative multiple case study research method showed the importance of the music therapist\u2019s (MT) continuous support. The MT\u2019s presence made it possible to address the needs of both spouses, separately and together, while maintaining the required balance. Moreover, the MT\u2019s presence enabled better implementation of the musical strategies independently and this was maintained during the intervention and the support period.<\/p>\n Read the full article<\/a>: Published 2023,\u00a0Frontiers in Public Health<\/em><\/p>\n<\/div>\n <\/details>\n What was it like for family carers of people with dementia one year into the COVID-19 pandemic?<\/strong><\/p>\n We interviewed seven family carers of people with dementia in 2021. We were interested in their experiences one year into the COVID-19 pandemic and after the vaccine had been introduced. We were also interested in thinking about how resilient they were, and why. All but one person was caring for a spouse or partner. One person was a daughter caring for her mother. Everyone we spoke to was living with the family member they cared for. Our youngest family carer was 53, and our oldest was 89.<\/p>\n People told us what it was like caring for their family member during a later stage of the pandemic. They said that they still had to protect the person they cared for by avoiding the risk of COVID-19. Some were taking \u201csmall steps\u201d in going out again. Earlier in the pandemic, one person had stopped paid carers coming in, saying: \u201cwe didn\u2019t want [COVID-19] brought into the house for us\u201d. Some people felt that their family member had declined. This was because they had not been able to go out. People wanted to care for their loved ones, but caring for a family member with dementia could be quite an intense role. One person said: \u201cI live at a high level of adrenalin much of the time\u201d. People also had little or no time to pursue their own interests. Two people found it difficult to combine caring with full-time work. Because of social restrictions, people were also caring in isolation. Family members could not offer support in person.<\/p>\n Not everyone we spoke to said they felt stressed, but some people said they felt \u2018burned out\u2019 and abandoned. They had been caring beyond their capacity. People said no one had been \u2018checking in\u2019 on them except for charity volunteers telephoning them. Later in the pandemic, some people said there were fewer of these phone calls. Also, groups like dementia caf\u00e9s had not restarted yet. Day care and respite care were also still absent or limited. One person spoke about needing to access respite care but felt guilty about this: \u201c\u2026if I could, I would spare [my partner] the kind of abandonment. But on the other hand, I \u2026 I would not trust myself to be \u2026 to keep going forever\u201d. Another person was told he would need to wait for six months to get a health and social care assessment for his wife. People also said that lack of support from health and social care was nothing new, but the pandemic seemed to have made this worse. Even before the pandemic, people said that their family members had not had much follow up after their dementia diagnosis. Mostly families seem to have been managing on their own.<\/p>\n Family carers want to care for their loved ones with dementia but this can be difficult. Their experiences during the pandemic have further exposed why appropriate service support is so important. Without it, family members are caring on their own and may \u2018burn out\u2019. Some researchers think we should try to make family carers better able to withstand this kind of stress. We argue that trying to make individual carers more mentally resilient is insufficient on its own. To support family carers of people with dementia, there needs to be sustained support from services after diagnosis and improved access to appropriate health and social care. Family carers\u2019 own needs, separate from their caring role, also need to be considered.<\/p>\n Read the full article<\/a>:<\/strong> Published May 2023, International Journal of Care and Caring<\/em><\/p>\n<\/div>\n <\/details>\n If a person feels lonely or isolated, does this affect their partner? <\/strong><\/p>\n We spoke to 1,042 people with dementia and carers who were either married couples or living together as partners. We asked them about:<\/p>\n We found that:<\/p>\n How people with dementia and carers feel about their relationship also makes a difference. If people feel closer to their partner, both they and their partner are less affected by loneliness or isolation.<\/p>\n If one person in a couple feels lonely or sees fewer people it can affect the other person\u2019s life, too. It is important for health and social care services to consider the experiences of both the person with dementia and the carer.<\/p>\n Read the full article<\/a>:<\/strong> Published December 2023, Aging & Mental Health Journal<\/em><\/p>\n<\/div>\n <\/details>\n Dementia makes it harder for people to remember. Dementia also makes it harder for people to do everyday tasks like shopping, cleaning, and dressing.<\/p>\n We asked 1537 people with dementia to tell us how well they could do these kinds of tasks. We also asked them to do a memory test. We asked 1266 family carers to rate how well they thought the person with dementia was able to do these everyday tasks. We collected this same information three times over two years.<\/p>\n We found that people with the most memory problems said that they had the most problems with everyday tasks. Family carers also said this. As time went on, we found that memory problems grew. We also found that problems with everyday tasks increased.<\/p>\n Ratings from people with dementia suggest that problems in everyday tasks increased as memory problems increased. On the other hand, ratings from family carers suggest that problems in everyday tasks increased much more than problems with memory.<\/p>\n This tells us that people with dementia have a good idea of the problems they experience with everyday tasks. They were good at recognising that changes in their ability to do these tasks was linked to how their memory changes.<\/p>\n This also tells us that family carers think problems with everyday tasks increase more quickly than problems with memory. This might be because other things, like stress for example, affect how carers rate ability in everyday tasks.<\/p>\n It is important to listen to the opinions of both the person with dementia and the carer. People with dementia can tell health and social care professionals how things are going to get the right support. Carers who identify a lot of difficulties could be offered further support to help them cope.<\/p>\n Read the full article<\/a>:<\/strong> Published September 2023, Alzheimer\u2019s & Dementia Journal<\/em><\/p>\n<\/div>\n <\/details>\n Do people with dementia and carers see everyday problems in the same way?<\/strong><\/p>\n People with dementia can have problems with everyday activities. This could mean they have problems remembering things, thinking clearly, making decisions, or doing everyday tasks.<\/p>\n We wanted to know if the family carer of a person with dementia sees the same problems as the person with dementia. If they see things differently, we wanted to find out why.<\/p>\n We talked to couples where one person had dementia and the other person was their spouse. We asked both people in the couple to say which of a list of everyday problems the person with dementia had. We looked at the difference between the two sets of answers. We also looked at the carer\u2019s answers alone.<\/p>\n Female carers tended to list more problems than male carers. Female carers also felt more stressed.<\/p>\n People with dementia tended to say fewer everyday problems than their carers did. When there was a big difference in how they saw things, the carer was usually more stressed. When the difference in how they saw things was smaller, the person with dementia tended to feel more depressed.<\/p>\n This tells us that it is important to listen to both the person with dementia and their carer when it comes to everyday problems. Understanding how each member of the couple sees things can help professionals better understand the situation and provide more personalised support.<\/p>\n Read the full article<\/a>:<\/strong> Published December 2023, Frontiers in Aging Neuroscience Journal<\/em><\/p>\n<\/div>\n <\/details>\n How have people with dementia coped with the COVID-19 restrictions over time?<\/strong><\/p>\n Early in the pandemic, people with dementia faced unique challenges. The COVID-19 rules stopped people doing their usual activities. These activities normally gave people with dementia a sense of purpose and helped them to live independently. Having less contact with people caused problems with getting the right health support, worsened mood, and made people worried about their dementia getting worse.<\/p>\n We wanted to know if the problems people experienced early in the pandemic would be the same two years later. We wanted to know how people with dementia were coping. The new rules allowed everyone to go out more. However, many services had not returned to normal. There was a new wave of infections from the \u2018Omicron\u2019 variant.<\/p>\n We re-interviewed nine people we had spoken to earlier in the pandemic. We wanted to understand what life was like for them and how they were doing at this point.<\/p>\n Five people had young-onset dementia and were aged between 51 and 68 years old. The other four people living with dementia were aged between 71 and 89. There were similar numbers of people living alone and living with a spouse or partner.<\/p>\n We found three common themes across the interviews:<\/p>\n The first theme was \u2018navigating a changing world\u2019. People were not comfortable with mixing because they felt unsafe. However, people also wanted to live fuller lives again. They did this by \u2018navigating\u2019 the situation and still taking precautions like wearing masks or restricting face-to-face contact.<\/p>\n A second theme was \u2018a downward spiral\u2019. In earlier interviews, people had concerns about their dementia getting worse. Now, people noticed changes in their skills, and were less confident. Although this made it more difficult to do some things, people did what they could to practice their skills.<\/p>\n The third theme was about \u2018access to support\u2019. Some people felt they could get the support they needed and others did not. Being in contact with family or friends, or having good neighbours, made things easier.<\/p>\n Many health and social services remained closed or were only available online. Some people struggled to get appointments. Although some had received medical help by phone or by using the internet, not everyone found this useful.<\/p>\n People with dementia continued to struggle even after social restrictions had eased. It is important to understand who may be in most need of help. Support groups and health services need to be available in ways that allow more people to access them.<\/p>\n Read the full article<\/a>:<\/strong> Published February 2023, Dementia Journal<\/em><\/p>\n<\/div>\n <\/details>\n How do feelings of uncertainty affect people living with dementia? <\/strong><\/p>\n Many people face insecurity and uncertainty in their lives due to circumstances they cannot control. This could make it harder to cope when living with dementia or caring for someone with dementia.<\/p>\n We spoke with 20 people with dementia and their family carers about their experiences. They were all part of the larger IDEAL study. We purposely spoke to people who were different from each other. Some felt positive about life, some negative. Some lived in a rural area, some in an urban area. We also had a range of ages, socio-economic backgrounds and a good gender balance.<\/p>\n Researchers sometimes call feelings of insecurity and uncertainty \u2018precarity\u2019 and study how precarity affects different people. We wanted to explore how feelings of insecurity and uncertainty affect people living with dementia and carers. We wanted to understand which uncertainties arose from dementia. We also thought there might be things about people\u2019s situations before dementia entered their lives which could make them feel more insecure or uncertain.<\/p>\n Some people experienced a lot of insecurity and uncertainty. They felt vulnerable. We found four themes:<\/p>\n Some uncertainties were due to dementia, like worrying about symptoms. Others were about systems beyond people\u2019s control, such as benefits and finances. Some worries were to do with beliefs, like remaining independent.<\/p>\n Lots of different things affect the experience of living with dementia. We need to remember that caring is difficult and that our needs change. People would manage better if they felt more confident that they would get the support they need.<\/p>\n Read the full article<\/a>:<\/strong> Published July 2023, Social Science & Medicine Journal<\/em><\/p>\n<\/div>\n <\/details>\n Do personality traits affect how people with dementia and their carers feel about their lives?<\/strong><\/p>\n A personality trait is a lifelong characteristic that affects how a person thinks, feels, and behaves. There are five main traits, which reflect how outgoing, organized, creative, cooperative, and relaxed a person is.<\/p>\n We wanted to find out if having different levels of these traits affected how people with dementia and carers felt about their lives. We looked at this when they joined the IDEAL study and over the next two years.<\/p>\n We spoke to over 1,500 people with dementia and 1,200 carers. They told us how much each trait described them when they joined the IDEAL study. They also answered questions about their quality of life, satisfaction with life, and well-being. In addition, people with dementia completed a memory test and carers told us how stressed they were feeling. We asked for this information again one and two years later.<\/p>\n All five traits influenced how people with dementia felt about their lives. Those who were more outgoing, organized, creative, cooperative, and relaxed had a more positive view of their lives than those with lower levels of these traits.<\/p>\n Carers who were more relaxed, outgoing, and organized had a more positive view of their life than those with lower levels of these traits. How creative or cooperative they were did not affect how they felt about their lives.<\/p>\n People tended to feel the same way about their lives over the two years of the study. There was not much change. Where feelings did change, it was not due to differences in personality traits.<\/p>\n Read the full article<\/a>:<\/strong> Published June 2023, BMC Geriatrics Journal<\/em><\/p>\n<\/div>\n <\/details>\n What makes a difference to coping with caring? <\/strong><\/p>\n Carers are family members, friends, or other supporters who provide help and support to people with dementia. Supporting a person with dementia can be demanding. Some carers find it easier than others to cope with these demands.<\/p>\n We wanted to find out how carers are coping with these tasks and why others are not coping so well.<\/p>\n We asked 1,222 carers some questions about how they were coping. We also asked them about themselves and about the person with dementia. To measure coping we created a coping score based on the answers people gave to five questionnaires.<\/p>\n Older carers and male carers were most likely to be coping well. Certain things led to carers coping better:<\/p>\n Carers also coped better if the person with dementia:<\/p>\n Overall, carers of people with mild-to-moderate dementia are coping well with their caring roles. However, it is always important to make sure that carers are receiving the support they need as a carer.<\/p>\n Read the full article<\/a>:<\/strong> Published December 2023, BMC Geriatrics Journal<\/em><\/p>\n<\/div>\n <\/details>\n This study uses data from the IDEAL programme, which is a large research project that aims to find out what helps people to \u2018live well\u2019 with dementia. Over 1,500 people with mild-to-moderate dementia (MMSE>14) and their carers were interviewed as part of the programme. The interviews included questions on people\u2019s use of health and social services, out-of-pocket payments for equipment and travel to appointments and unpaid care provided by family and friends.<\/p>\n The average total costs of health and social care, out-of-pocket payments and unpaid care were estimated at \u00a34,008 per person with dementia over a 3 month period, equivalent to over \u00a316,000 a year. The estimated cost for the use of health and social care services over 3 months was \u00a31,004. Most people used few health services other than GP services and hospital outpatient care, and use of social care services such as home care was low. As we are following this group of people over time, we will be able to see if the use of social care increases as the condition progresses.<\/p>\n The findings show that unpaid carers of people with dementia are disproportionately shouldering the costs of care \u2013 covering 75% of the total costs (\u00a32,928 over a 3 month period and \u00a311,712 a year) and giving upwards of 470 hours of their time over a three month period to care for people with dementia, equivalent to an average of 36 hours a week.<\/p>\n Most of the people with dementia (87%) received help on a regular basis from friends or relatives. For nearly a third (30%), this included assistance with personal care.<\/p>\n Relationship to carer, living alone, socio-economic group and income were all related to the likelihood of receiving social care. People living alone were nearly twice as likely as those living with others to use social care services.<\/p>\n Two thirds of the people with dementia surveyed in IDEAL used aids and adaptations, most commonly mobility aids; 13% used pendant alarms and 12% calendar clocks.<\/p>\n Those with Parkinson\u2019s disease dementia had almost double the average care costs compared to other dementias (\u00a38,609 over a 3-month period and \u00a334,436 a year). Estimated primary and community health care, social care and medication costs were highest for this group compared to those for people with other types of dementia. Total costs for women were lower than for men.<\/p>\n Read the full article<\/a>: <\/strong>Published 2022, IOS Press Content Library<\/em><\/p>\n<\/div>\n <\/details>\n Do people with dementia get to make decisions about their daily life?<\/strong><\/p>\n We all make many decisions every day. We decide what to eat, what to wear, where to go and how to spend our time. These decisions are based on our personal preferences.<\/p>\n We work with people with mild-to-moderate dementia who live at home. Often they want to make their own decisions. Sometimes, other people may make decisions for them. We wanted to find out which decisions people with dementia make and how these change over time.<\/p>\n We asked family members who support people living with dementia about decision-making. We call these family members \u2018carers\u2019. We asked them the same questions again one year and two years later to see what changed over time.<\/p>\n Carers told us about the kinds of decisions people with dementia make, and the kinds of decisions that they make for the person with dementia. Carers also told us:<\/p>\n People with dementia told us how well they get along with their carer.<\/p>\n Carers told us that people with dementia make lots of everyday decisions. People with dementia are very involved in some decisions like when to get up and what to eat. They are less involved in other decisions like where to go and when to visit friends.<\/p>\n Our results showed certain patterns:<\/p>\n Overall, carers are doing well at involving people with dementia in decisions. Some carers may need support to be able to keep the person involved in making decisions. Carers who feel stressed or feel they do not get along with the person with dementia may need more general support.<\/p>\n Read the full article<\/a>:<\/strong> Published October 2022, Journal of Applied Gerontology<\/em><\/p>\n<\/div>\n <\/details>\n What do carers find satisfying about caring?<\/strong><\/p>\n Carers are family members, friends, or other supporters who provide help and support to people with dementia. Carers will have different experiences of caring. Some carers can find caring stressful. Some carers can also find caring to be a rewarding experience. In this study we explored what carers found satisfying when providing care.<\/p>\n For this study we used information provided by carers who had taken part in the IDEAL programme. This study looks at what helps people to \u2018live well\u2019 with dementia.<\/p>\n Carers were asked about the satisfactions they gained from providing care. Of the 900 carers who answered this question, 839 detailed satisfactions from caring. 49 carers had no satisfactions, and 12 were unsure.<\/p>\n We looked at the answers from the carers who identified satisfactions. We found they talked about eight topics:<\/p>\n Carers had \u2018grown\u2019 and learnt new skills through caring.<\/p>\n The findings show that carers can identify positive experiences of caring. This helps us to think about the types of support that carers may find helpful. People working with carers should ask them about these positive experiences. This will help them to provide good support to carers.<\/p>\n Read the full article<\/a>:<\/strong> Published June 2022, Aging & Society Journal <\/em><\/p>\n<\/div>\n <\/details>\n What resources do people with dementia have, and do these make a difference to \u2018living well\u2019?<\/strong><\/p>\n The resources we have \u2013 such as friends, interests, and money \u2013 contribute to what we do and how we feel. They are important for \u2018living well\u2019, or quality of life. Having dementia could change our resources. For example, as time goes on it might be harder to do some kinds of activities or keep in contact with friends.<\/p>\n We asked people living at home with mild-to-moderate dementia about the resources they have and about their quality of life. We asked them the same questions again one year and two years later.<\/p>\n People with dementia did not get out and about much or get involved in many activities. A few had plenty of social contact, for example with friends, but most did not. Some people said they had enough money to spend, but most had limited funds. These resources did not change much over time.<\/p>\n People\u2019s resources did vary, but the differences were generally small. There were no clear links with quality of life.<\/p>\n The most striking finding was that people living at home with mild-tomoderate dementia have limited opportunities to socialize and do various activities. As a society we need to create more opportunities for people to do these things if they want to. We need to make sure these opportunities are accessible for people with limited funds.<\/p>\n Read the full article:<\/a><\/strong> Published December 2022, Social Science & Medicine journal<\/em><\/p>\n<\/div>\n <\/details>\n Which aspects of life make a difference for carers?<\/strong><\/p>\n We each have done different things in our lives. Some people spend longer studying, some do more years in work. There are differences in activities too: we might have hobbies, or visit family and friends. Our income is also important. We call these aspects of life resources.<\/p>\n We wanted to find out what types of resources carers of people with dementia have. In this case, we were looking at people who care for their wife or husband. We also wanted to find out whether those carers with more resources are less stressed and depressed, and report more positive experiences of caring.<\/p>\n Spousal carers of people with dementia told us about the resources they had. They also rated their level of stress and mood. Moreover, they told us about the good and bad aspects of being a carer. Carers answered the same questions again two more times one year apart.<\/p>\n Overall, carers rarely met up with friends and family but spoke with them on the phone. Carers\u2019 income was similar to what other people their age had.<\/p>\n Not everybody was the same. We found that carers could be placed into four groups.<\/p>\n The first group had very low social, cultural, and economic resources. The second group had low social, cultural, and economic resources. Both groups did not have much money to spend. The third group had very high social and cultural resources and plenty of money to spend. The fourth group had high social and cultural resources and enough money to spend.<\/p>\n Carers with fewer resources were slightly less stressed. They also reported more positive experiences of caring. However, they were more depressed.<\/p>\n We need to better help people who are caring for their spouses with dementia so they can have some time off from caring, meet friends, and pursue hobbies. This would help them to maintain good wellbeing.<\/p>\n Read the full article<\/a>:<\/strong> Published July 2022, Aging & Mental Health Journal<\/em><\/p>\n<\/div>\n <\/details>\n There are several different types of dementia. Each type has different symptoms and challenges. These challenges can affect the ability to \u2018live well\u2019. People who are \u2018living well\u2019 are satisfied with their lives, and experience good quality of life and wellbeing. We wanted to find out whether the person\u2019s type of dementia makes it easier or harder to \u2018live well\u2019. We used information from 1283 people with dementia and their family carers taking part in the IDEAL study. IDEAL is following a large group of people with dementia and family carers in Great Britain over several years.<\/p>\n We compared the \u2018living well\u2019 scores of people with different types of dementia. Alzheimer\u2019s disease was the most common type of dementia. People with some other types of dementia had lower \u2018living well\u2019 scores than people with Alzheimer\u2019s disease. These were vascular dementia, mixed Alzheimer\u2019s and vascular dementia, Parkinson\u2019s disease dementia and Lewy body dementia. Family carers of people with Parkinson\u2019s disease dementia and Lewy body dementia had lower \u2018living well\u2019 scores than family carers of people with Alzheimer\u2019s disease. Living with dementia is challenging for everyone. This study shows that it is harder to \u2018live well\u2019 with certain types of dementia. This helps us understand how to improve support for people with dementia and their family carers.<\/p>\n Read the full article<\/a>:<\/strong> Published December 2022, BMC Medicine Journal<\/em><\/p>\n<\/div>\n <\/details>\n Characterization of the genetic landscape of Alzheimer\u2019s disease (AD) and related dementias (ADD) provides a unique opportunity for a better understanding of the associated pathophysiological processes. We performed a two-stage genome-wide association study totaling 111,326 clinically diagnosed\/\u2018proxy\u2019 AD cases and 677,663 controls. We found 75 risk loci, of which 42 were new at the time of analysis. Pathway enrichment analyses confirmed the involvement of amyloid\/tau pathways and highlighted microglia implication. Gene prioritization in the new loci identified 31 genes that were suggestive of new genetically associated processes, including the tumor necrosis factor alpha pathway through the linear ubiquitin chain assembly complex. We also built a new genetic risk score associated with the risk of future AD\/dementia or progression from mild cognitive impairment to AD\/dementia. The improvement in prediction led to a 1.6- to 1.9-fold increase in AD risk from the lowest to the highest decile, in addition to effects of age and the\u00a0APOE<\/i>\u00a0\u03b54 allele.<\/p>\n Read the full article:<\/a> Published 2022, Nature Genetics<\/em><\/p>\n<\/div>\n <\/details>\n The aim of this ethnographic study was to investigate how homecare workers support or inhibit independence in people living with dementia.<\/p>\n We undertook 100\u00a0h of participant observations with homecare workers (n<\/i>\u2009=\u200916) supporting people living with dementia (n<\/i>\u2009=\u200917); and 82 qualitative interviews with people living with dementia (n<\/i>\u2009=\u200911), family carers (n<\/i>\u2009=\u200922), homecare managers and support staff (n<\/i>\u2009=\u200911), homecare workers (n<\/i>\u2009=\u200919) and health and social care professionals (n<\/i>\u2009=\u200919). We triangulated data and analysed findings thematically.<\/p>\n We developed three themes: (1) independence and the home environment, highlighting ongoing negotiations between familiarity, suitability and safety for care; (2) independence and identity, exploring how homecare workers\u2019 understanding of their clients\u2019 identity can enable active participation in tasks and meaningful choices; and (3) independence and empowerment, considering the important position of homecare workers to advocate for clients living with dementia while navigating authoritative power amongst proxy decision-makers.<\/p>\n We consider that person-centred care should also be home-centred, respecting the client\u2019s home as an extension of self. Homecare workers can use their understanding of clients\u2019 identities, alongside skills in providing choice and developing relationships of interdependence to engage clients in everyday tasks. Homecare workers are well placed to advocate for their client\u2019s voice within the care network, although their ability to do so is limited by their position within power structures.<\/p>\n Read the full article<\/a>: Published 2021,\u00a0Social Psychiatry and Psychiatric Epidemiology\u00a0<\/em><\/p>\n<\/div>\n <\/details>\n Alzheimer\u2019s disease is a disorder of memory in older individuals. High blood pressure in mid-life increases the risk of developing Alzheimer\u2019s disease. We and others have found that a biochemical pathway in the brain, which also influences blood pressure, may be more relevant in Alzheimer\u2019s disease than changes to blood pressure. This pathway, the renin\u2013angiotensin system, includes a small molecule called angiotensin II that is raised in brain tissue from people with Alzheimer\u2019s disease. As well as raising blood pressure, angiotensin II influences inflammation and chemical stress in brain cells and stops the release of chemicals involved in memory. Angiotensin II also enhances the production of key proteins (amyloid-\u03b2 and tau) that damage brain tissue in Alzheimer\u2019s disease. All of these damaging characteristics point to angiotensin II being a detrimental factor in Alzheimer\u2019s disease.<\/p>\n We conducted a multicentre randomised clinical trial to test whether or not losartan, the first drug developed to reduce the function of angiotensin II, could slow the progression of Alzheimer\u2019s disease compared with placebo. We believed that reducing angiotensin II function would slow brain cell damage, brain shrinkage and memory problems in Alzheimer\u2019s disease while improving brain blood flow. We recruited 211 participants and their study partners through 23 centres across Great Britain and Northern Ireland. We used brain imaging techniques, 12 months apart, to measure changes in brain volume and, in a subset of people, levels of brain-related vascular damage and brain blood flow as indicators of disease. We also used established questionnaires to assess memory and thinking, quality of life and activities of daily living to explore if losartan brought any benefits. Unfortunately, we found no evidence that 12 months\u2019 treatment with losartan slowed the progression of Alzheimer\u2019s disease according to our main study measures. Although losartan was unsuccessful in this study design, other study designs testing related drugs may still be successful.<\/p>\n Read the full article<\/a>: <\/strong>Published 2021, NIHR Journals Library<\/em><\/p>\n<\/div>\n <\/details>\n What was this research about and why was it important?<\/strong><\/p>\n An estimated 1 in 14 people over the age of 65 living in the UK have dementia. Although we are yet to find a cure, early diagnosis and interventions can allow patients to live independently for longer. Therefore, early and efficient diagnosis is one of the most important tools in a clinician\u2019s arsenal. However, diagnosis can be complicated by the fact that that many types of dementia exist and, the specific pattern of damage within a person\u2019s brain will affect how individual symptoms present. Therefore, any test needs to be able to detect and pinpoint a range of symptoms. Being familiar with a range of clinical tests used to diagnose dementia, Professor Alistair Burns and his team noticed a problem with these existing tools. Not only were the majority subject to copyright, thus requiring payment for use, no single test combined measures of cognition (memory, visual and spatial function, language and fluency) with measures of executive function (social functioning, travel, self-care and safety in the home). It was this observation that sparked the idea for Free-Cog; a free-to-use assessment tool which combined tests of cognition and executive function into one global test, designed to be suitable for use in a busy clinical environment.<\/p>\n What did our patients say about taking part?<\/strong><\/p>\n Patients and members of the public were involved in developing this project at a very early stage. Professor Burn\u2019s team worked with The Alzheimer\u2019s Society\u2019s Research Network to ensure that the format and wording of the test questions were tailored to patient\u2019s needs. This involvement appeared to be beneficial, since many patients who were involved in trialing out the Free-Cog assessment commented that they liked its \u2018conversational style\u2019 and that they felt more relaxed and confident taking this test than some other more commonly use assessments. \u201cIt didn\u2019t feel like an examination, it felt more like a TV quiz and was much better than the other assessment\u201d, \u201cMy father seemed more visibly relaxed completing the Free-Cog study then the previous assessment\u201d<\/p>\n What did the study find?<\/strong><\/p>\n In total, 956 participants from across the UK took part in trialing the Free-Cog assessment. Many Greater Manchester patients fed back to our research nurses saying they found the experience interesting and enjoyable. The study showed that Free-Cog was similar to existing, routinely used, tests in its ability to differentiate between patients with Mild Cognitive Impairment (MCI) and Dementia and between healthy patients with no cognitive diagnosis and those with MCI. Despite some limitations, including a lack of specificity inherent in being a global scale and minimal written instructions, designed to make it easier for busy clinicians but which may be less acceptable for inexperienced staff; the Free-Cog assessment performed well and may have a number of benefits over current routinely used tests.<\/p>\n How will it improve services in the future?<\/strong><\/p>\n This tool is free to use, measures both cognitive and executive functioning and is less likely to be perceived as a \u2018test\u2019 by patients meaning overall performance may be less impacted by patient anxiety. Combine these benefits with the finding that its performance is on par with other more commonly used tests and that it has a telephone consultation version (Tele Free-Cog) which also discriminates between patient groups, this makes Free-Cog a particularly powerful tool which may also adapt well to non-face-to-face setting. The Free-Cog will remain freely available in perpetuity. It is available to anyone interested in trialing it, translating it or validating it.<\/p>\n\n 2024: SONNET: Social connection in long-term care homes: a qualitative study of barriers and facilitators<\/span>\n <\/summary>\n
\n 2024: IDEAL: Correlates of Felt Age in Caregivers of People with Dementia: Findings from the IDEAL Study<\/span>\n <\/summary>\n
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\n 2024: PATHFINDER: Information about the results of the PATHFINDER trial<\/span>\n <\/summary>\n
\n 2024: IDEAL: Health conditions in spousal caregivers of people with dementia and their relationships with stress, caregiving experiences, and social networks: longitudinal findings from the IDEAL programme<\/span>\n <\/summary>\n
\n 2023: HOMESIDE: Home-based music therapy for persons with dementia and their spouses as primary caregivers<\/span>\n <\/summary>\n
\n 2023: IDEAL: Caring beyond capacity\u2019 during the coronavirus pandemic: resilience and family carers of people with dementia from the IDEAL cohort<\/span>\n <\/summary>\n
\n 2023: IDEAL: Dyadic perspectives on loneliness and social isolation among people with dementia and spousal carers: findings from the IDEAL programme<\/span>\n <\/summary>\n
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\n 2023: IDEAL: Trajectories of cognitive and perceived functional decline in people with dementia. Findings from the IDEAL programme<\/span>\n <\/summary>\n
\n 2023: IDEAL: Dyadic influences on awareness of condition in people with dementia: Findings from the IDEAL cohort<\/span>\n <\/summary>\n
\n 2023: IDEAL: Navigating the coronavirus pandemic two years on: Experiences of people with dementia from the British IDEAL cohort<\/span>\n <\/summary>\n
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\n 2023: IDEAL: The precariousness of living with, and caring for people with, dementia: Insights from the IDEAL programme<\/span>\n <\/summary>\n
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\n 2023: IDEAL: The precariousness of living with, and caring for people with, dementia: Insights from the IDEAL programme<\/span>\n <\/summary>\n
\n 2023: IDEAL: Resilience in carers of people with mild-to-moderate dementia: findings from the IDEAL cohort<\/span>\n <\/summary>\n
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\n 2022: The IDEAL Cohort Study: Use and costs of services and unpaid care for people with mild-to-moderate dementia: baseline results from the IDEAL cohort study<\/span>\n <\/summary>\n
\n 2022: IDEAL: Longitudinal predictors of informant-rated involvement of people with dementia in everyday decision-making<\/span>\n <\/summary>\n
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\n 2022: IDEAL: Positive experiences in dementia care-giving: Findings from the IDEAL programme<\/span>\n <\/summary>\n
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\n 2022: IDEAL: Are profiles of social, cultural, and economic capital related to living well with dementia? Longitudinal findings from the IDEAL cohort<\/span>\n <\/summary>\n
\n 2022: IDEAL: Profiles of social, cultural, and economic capital as longitudinal predictors of stress, positive experiences of caring, and depression among carers of people with dementia<\/span>\n <\/summary>\n
\n 2022: IDEAL: Dementia sub-type and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study<\/span>\n <\/summary>\n
\n 2022: New insights into the genetic etiology of Alzheimer\u2019s disease and related dementias<\/span>\n <\/summary>\n
\n 2021: NIDUS-Family: Supporting independence at home for people living with dementia: a qualitative ethnographic study of homecare<\/span>\n <\/summary>\n
\n 2021: RADAR: Losartan to slow the progression of mild-to-moderate Alzheimer's disease through angiotensin targeting: the RADAR RCT<\/span>\n <\/summary>\n
\n 2021: Free-Cog: The Free-Cog study: A novel hybrid scale for the assessment of cognitive and executive function in dementia<\/span>\n <\/summary>\n