Alzheimer’s disease is a disorder of memory in older individuals. High blood pressure in mid-life increases the risk of developing Alzheimer’s disease. We and others have found that a biochemical pathway in the brain, which also influences blood pressure, may be more relevant in Alzheimer’s disease than changes to blood pressure. This pathway, the renin–angiotensin system, includes a small molecule called angiotensin II that is raised in brain tissue from people with Alzheimer’s 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-β and tau) that damage brain tissue in Alzheimer’s disease. All of these damaging characteristics point to angiotensin II being a detrimental factor in Alzheimer’s disease.

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’s disease compared with placebo. We believed that reducing angiotensin II function would slow brain cell damage, brain shrinkage and memory problems in Alzheimer’s 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’ treatment with losartan slowed the progression of Alzheimer’s 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.

Read the full article: Published 2021, NIHR Journals Library

What was this research about and why was it important?

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’s 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’s 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.

What did our patients say about taking part?

Patients and members of the public were involved in developing this project at a very early stage. Professor Burn’s team worked with The Alzheimer’s Society’s Research Network to ensure that the format and wording of the test questions were tailored to patient’s 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 ‘conversational style’ and that they felt more relaxed and confident taking this test than some other more commonly use assessments. “It didn’t feel like an examination, it felt more like a TV quiz and was much better than the other assessment”, “My father seemed more visibly relaxed completing the Free-Cog study then the previous assessment”

What did the study find?

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.

How will it improve services in the future?

This tool is free to use, measures both cognitive and executive functioning and is less likely to be perceived as a ‘test’ 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.

Read the full article: Published 2021, International Journal of Geriatric Psychiatry

Diagnosis of dementia and mild cognitive impairment (MCI) is improving, but people affected by cognitive impairment need ongoing support to maintain a good quality of life. Current health and social care policy states that improved quality of life should be an outcome of effective services following diagnosis, but this is currently not being measured. The Long-Term Condition Questionnaire (LTCQ) is a patient-reported measure of ‘living well with long-term health conditions’ that could be used to monitor how well people are supported following a diagnosis of cognitive impairment. The purpose of this study was to test the use of LTCQ in English memory clinic settings. For the first phase of research, 12 people affected by cognitive impairment completed LTCQ during interviews and gave feedback about their experiences. A modified version of LTCQ was then completed through a survey taken by 105 people with a new diagnosis of MCI or dementia. Survey results showed that LTCQ scores were worse for patients with multiple long-term conditions (including MCI/dementia) and for patients who required more help in completing the survey. But most patients were able to respond to LTCQ questions themselves, to directly report their quality of life. Sixty-one patients completed LTCQ again four months later, and changes in LTCQ scores reflected whether patients’ health had gotten better or worse since diagnosis. We concluded that LTCQ could potentially be used to monitor quality of life following a diagnosis of cognitive impairment and should be tested further among larger numbers of patients.

Read the full article: Published 2021, Quality of Life Research

Alzheimer’s disease affects about 700,000 people in the UK and, although there are drug treatments that can modestly improve some of the symptoms, we do not yet have any treatments that slow down the progression of dementia.

Minocycline is an antibiotic that has been shown to protect brain cells in a number of experimental and animal models of Alzheimer’s disease. Minocycline is cheap and well tolerated. If it could significantly slow down the course of Alzheimer’s disease, it could quickly be made available to large numbers of people with Alzheimer’s disease worldwide. Although minocycline is probably one of the best current candidates for Alzheimer’s disease modification, the current evidence can only suggest a potential benefit.

A clinical trial was conducted to determine definitively whether or not minocycline is effective in slowing the decline in Alzheimer’s disease. Long-term treatment effects of minocycline were investigated, with two doses of minocycline, on decline in cognitive function, including memory, attention and language, and ability to carry out essential functions of daily living, such as getting dressed, grooming and eating.

Unfortunately, the study found that minocycline treatment did not have any measurable effect in slowing down the progression of Alzheimer’s disease. Participants who took minocycline showed exactly the same worsening of their cognitive functioning and activities of daily living as those who were allocated to placebo treatment. The trial also established that minocycline at the high dose is poorly tolerated in patients with Alzheimer’s disease, whereas the low dose of minocycline is well tolerated, with participants being no more likely to withdraw from trial medication than those taking placebo.

One limitation of the study is that biomarkers were not used to confirm Alzheimer’s disease diagnosis, as tests for biomarkers are not routinely available within the NHS. Compliance with medication was also worse than expected, with few patients in the high-dose arm completing 2 years’ treatment and only moderate compliance in the low-dose and placebo treatment arms. It was difficult to obtain outcome assessments that resulted in unequal numbers of completed assessments across treatment arms, which could have biased the study’s results. Having said that, additional analyses investigating potential bias have, reassuringly, shown the same pattern of results.

Although disappointing, these results are important because they will guide further research into the search for a treatment. There is currently much interest in treating inflammatory changes in the brain in Alzheimer’s disease and, as minocycline is a potent anti-inflammatory drug, the study’s results will show researchers which pathways they should focus on.

Read the full article: Published 2020, NIHR Journals Library

No lay summary in original article.

Read the full article: Published October 2016, International Journal of Geriatric Psychiatry

This study uses data from the IDEAL programme, which is a large research project that aims to find out what helps people to ‘live well’ 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’s use of health and social services, out-of-pocket payments for equipment and travel to appointments and unpaid care provided by family and friends.

The average total costs of health and social care, out-of-pocket payments and unpaid care were estimated at £4,008 per person with dementia over a 3 month period, equivalent to over £16,000 a year. The estimated cost for the use of health and social care services over 3 months was £1,004. 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.

The findings show that unpaid carers of people with dementia are disproportionately shouldering the costs of care – covering 75% of the total costs (£2,928 over a 3 month period and £11,712 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.

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.

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.

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.

Those with Parkinson’s disease dementia had almost double the average care costs compared to other dementias (£8,609 over a 3-month period and £34,436 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.

Read the full article: Published 2022, IOS Press Content Library

Do caregivers of people with dementia who were also in regular employment (paid or voluntary) feel they have better quality of life and well-being compared to nonworking caregivers?

We asked 1239 spouse, relative and friend carers who took part in the IDEAL programme to self-rate their quality of life and well-being, and to comment on other factors like their caregiving experience and social support. Our carers ranged in age from 26-96 years of age. Whatever their age, their gender, or their relationship to the care recipient (spouse, relative, friend), working carers reported higher quality of life score than carers who were not working. This may reflect the benefit of the sense of independence that supported work opportunities gives to carers. Whether they were working or not working, carers who had a good self-esteem and had found ways to reduce their stress levels felt better about their quality of life and well-being. Carers who had good social support, and who felt positive about the care they were providing and their own competence in providing good care reported higher quality of life and well-being scores. This is one of the biggest surveys comparing working and nonworking carers in the UK. It has revealed the value of supported work opportunities for people caring for people with dementia. It has also provided a clear message on how we can support and improve the health and well-being of the hundreds of thousands of people providing informal care for their relatives, by helping them to keep connected, to value themselves, their own skills and the huge importance of that caring role.

Read the full article: Published 2021, Sussex Research Online

Restrictions introduced in response to the COVID-19 pandemic led to an increased risk of deconditioning in the general population; a loss of function in movement, mental status or the ability to accomplish daily activities. This study aimed to identify the causes and effects of COVID-19 related deconditioning specifically in people living with dementia. Interviews were conducted remotely with 24 participants living with dementia, 19 carers and 15 therapists 2 months after the first national lockdown in March 2020 and again 2 months later. The content of these interviews was analysed and a self-reinforcing pattern was common. The lockdown made the person apathetic, demotivated, socially disengaged and frailer which reduced activity levels and this then reinforced the effects of deconditioning over time. This deconditioning occurs in the general population yet we also found that this was exacerbated by having dementia and that there were particular contributing factors specific to dementia. Such as the cognitive demand required by them to remember and maintain social distancing rules and then the negative effects of further restrictions imposed by their carers to reduce their breaches in following restrictions. Without external support, most participants lacked the motivation and cognitive abilities to keep active, however those that received remote support from therapists via video were able to better combat deconditioning. This study highlights the increased risk that people with dementia have to deconditioning and the importance of support and potential that tele-rehabilitation has as an effective strategy to reduce it.

Read the full article: Published 2020, medRxiv

The study investigated whether a talking therapy, called Problem Adaptation Therapy, could improve the symptoms of depression in people with Alzheimer’s disease.

A total of 336 people with Alzheimer’s 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.

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.

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.

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.

Read the full article: Published March 2024, Journal of Alzheimer’s Association

What was the study about?

We wanted to see whether the two questionnaires that the research team based at Personal Social Services Research Unit, University of Kent has developed are (1) easy to complete and (2) measure what they are intended to measure – that is, aspects of people’s lives that might be affected by using social care services.

In this study, we were especially interested in social care services that people use when they are living at home, like home care, day activities or support from a carers centre.

The first questionnaire, called ASCOT-Carer, looks at aspects of life that are important to family and friends who look after someone. The second questionnaire, called ASCOT-Proxy, looks at aspects of life that are important to person living with dementia. ASCOT-Proxy was designed to collect information about someone who is unable to take part in surveys. In this study, we asked family and friends, who support someone with dementia, to fill in the questionnaire.

What did researchers learn from this study?

Both questionnaires have very low missing information. This indicates that carers of people living with dementia in England find the questionnaires easy to fill in. The results also confirmed that the questionnaires are reliable and measure what they were intended to measure. This means that we can use these questionnaires, with confidence, in future research. This will help us to understand whether, when and how different social care services improve people’s lives.

In addition, this study has shown that people living with dementia and their carers have high levels of unmet needs even when in contact with social care services. This shows that the needs of people with dementia and their carers are not always being fully understood and addressed. This is an important message for adult social services, social care providers and funders or decision-makers.

We also found that some people are more likely to have unmet needs – especially, people with their own health problems and when the design of the home is not suitable for the person living with dementia. This suggests that social care, healthcare and housing services need to work better together.

ASCOT study results

What was it like for family carers of people with dementia one year into the COVID-19 pandemic?

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.

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 “small steps” in going out again. Earlier in the pandemic, one person had stopped paid carers coming in, saying: “we didn’t want [COVID-19] brought into the house for us”. 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: “I live at a high level of adrenalin much of the time”. 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.

Not everyone we spoke to said they felt stressed, but some people said they felt ‘burned out’ and abandoned. They had been caring beyond their capacity. People said no one had been ‘checking in’ 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 cafés 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: “…if I could, I would spare [my partner] the kind of abandonment. But on the other hand, I … I would not trust myself to be … to keep going forever”. 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.

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 ‘burn out’. 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’ own needs, separate from their caring role, also need to be considered.

Read the full article: Published May 2023, International Journal of Care and Caring

How old do carers of people with dementia feel and why?

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.

We wanted to find out:

• How old carers of people with dementia feel
• Whether carers who feel older than their actual age have poor health and low mood
• What is different about carers who feel older than their actual age?

To answer these questions researchers spoke with 1,247 carers of people with dementia.

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.

Asking carers what age they feel can help identify those who are doing less well.

Read the full article: Published January 2024, Frontiers in Psychology Journal

What difference do health problems make to carers of people with dementia?

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.

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.

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.

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.

Having more health conditions went along with feeling more stressed. Over time, it meant people had less contact with friends and family.

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’ health.

Read the full article: Published February 2024, BMC Geriatrics Journal

If a person feels lonely or isolated, does this affect their partner?

We spoke to 1,042 people with dementia and carers who were either married couples or living together as partners. We asked them about:

• feeling lonely
• how much contact they had with family and friends, to see whether they were isolated
• how they felt about their relationship
• how they felt about their lives.

We found that:

• if a person with dementia or a carer feels lonely, they may feel less happy about their life
• if a carer feels lonely, this can sometimes affect how happy the person with dementia feels about their life
• if a person with dementia sees fewer people, this can sometimes make the carer feel less happy about their life

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.

If one person in a couple feels lonely or sees fewer people it can affect the other person’s life, too. It is important for health and social care services to consider the experiences of both the person with dementia and the carer.

Read the full article: Published December 2023, Aging & Mental Health Journal

Dementia makes it harder for people to remember. Dementia also makes it harder for people to do everyday tasks like shopping, cleaning, and dressing.

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.

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.

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.

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.

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.

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.

Read the full article: Published September 2023, Alzheimer’s & Dementia Journal

What do carers find satisfying about caring?

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.

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 ‘live well’ with dementia.

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.

We looked at the answers from the carers who identified satisfactions. We found they talked about eight topics:

Carers had ‘grown’ and learnt new skills through caring.

• Carers enjoyed spending time with the person with dementia.
• Carers were making a difference to the life of the person with dementia.
• Carers found it satisfying that they were fulfilling their duty by caring.
• Carers were helping the person with dementia to keep some of their independence.
• Carers felt they were providing good quality care.
• Carers were helping to improve the well-being of the person with dementia.
• Carers enjoyed their relationship with the person with dementia.

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.

Read the full article: Published June 2022, Aging & Society Journal

Do people with dementia and carers see everyday problems in the same way?

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.

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.

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’s answers alone.

Female carers tended to list more problems than male carers. Female carers also felt more stressed.

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.

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.

Read the full article: Published December 2023, Frontiers in Aging Neuroscience Journal

How have people with dementia coped with the COVID-19 restrictions over time?

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.

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 ‘Omicron’ variant.

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.

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.

We found three common themes across the interviews:

1. Navigating a changing world
2. A downward spiral
3. Access to support

The first theme was ‘navigating a changing world’. People were not comfortable with mixing because they felt unsafe. However, people also wanted to live fuller lives again. They did this by ‘navigating’ the situation and still taking precautions like wearing masks or restricting face-to-face contact.

A second theme was ‘a downward spiral’. 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.

The third theme was about ‘access to support’. 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.

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.

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.

Read the full article: Published February 2023, Dementia Journal

How do feelings of uncertainty affect people living with dementia?

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.

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.

Researchers sometimes call feelings of insecurity and uncertainty ‘precarity’ 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’s situations before dementia entered their lives which could make them feel more insecure or uncertain.

Some people experienced a lot of insecurity and uncertainty. They felt vulnerable. We found four themes:

1. Feeling unsure about how the symptoms of dementia would progress
2. Worrying whether they would be able to access the care and support they needed in the future
3. Trying to stay independent even if that was getting harder
4. Lots of different worries building up together These things made it harder for them to manage.

Some uncertainties were due to dementia, like worrying about symptoms. Others were about systems beyond people’s control, such as benefits and finances. Some worries were to do with beliefs, like remaining independent.

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.

Read the full article: Published July 2023, Social Science & Medicine Journal

Do personality traits affect how people with dementia and their carers feel about their lives?

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.

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.

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.

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.

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.

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.

Read the full article: Published June 2023, BMC Geriatrics Journal

What makes a difference to coping with caring?

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.

We wanted to find out how carers are coping with these tasks and why others are not coping so well.

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.

Older carers and male carers were most likely to be coping well. Certain things led to carers coping better:

• If they had a good relationship with the person with dementia
• If they felt they were doing a good job of caring
• If they were less inclined to worry
• If they were able to go out more

Carers also coped better if the person with dementia:

• Was older
• Felt more positive
• Had only minor difficulty with everyday tasks like shopping, cleaning, and getting dressed.

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.

Read the full article: Published December 2023, BMC Geriatrics Journal

Do people with dementia get to make decisions about their daily life?

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.

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.

We asked family members who support people living with dementia about decision-making. We call these family members ‘carers’. We asked them the same questions again one year and two years later to see what changed over time.

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:

• how much help they give the person with dementia
• how stressed they feel
• how well they get along with the person with dementia.

People with dementia told us how well they get along with their carer.

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.

Our results showed certain patterns:

• Women with dementia are more involved in making everyday decisions than men with dementia
• Carers who are husbands and wives of people with dementia make more decisions for them than carers who are daughters, sons or other relatives
• Carers make more decisions as the person’s dementia progresses
• Carers who do not get along well with the person with dementia make more decisions
• Carers who are more stressed make more decisions for people with dementia.

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.

Read the full article: Published October 2022, Journal of Applied Gerontology

What resources do people with dementia have, and do these make a difference to ‘living well’?

The resources we have – such as friends, interests, and money – contribute to what we do and how we feel. They are important for ‘living well’, 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.

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.

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.

People’s resources did vary, but the differences were generally small. There were no clear links with quality of life.

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.

Read the full article: Published December 2022, Social Science & Medicine journal

Which aspects of life make a difference for carers?

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.

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.

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.

Overall, carers rarely met up with friends and family but spoke with them on the phone. Carers’ income was similar to what other people their age had.

Not everybody was the same. We found that carers could be placed into four groups.

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.

Carers with fewer resources were slightly less stressed. They also reported more positive experiences of caring. However, they were more depressed.

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.

Read the full article: Published July 2022, Aging & Mental Health Journal

There are several different types of dementia. Each type has different symptoms and challenges. These challenges can affect the ability to ‘live well’. People who are ‘living well’ are satisfied with their lives, and experience good quality of life and wellbeing. We wanted to find out whether the person’s type of dementia makes it easier or harder to ‘live well’. 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.

We compared the ‘living well’ scores of people with different types of dementia. Alzheimer’s disease was the most common type of dementia. People with some other types of dementia had lower ‘living well’ scores than people with Alzheimer’s disease. These were vascular dementia, mixed Alzheimer’s and vascular dementia, Parkinson’s disease dementia and Lewy body dementia. Family carers of people with Parkinson’s disease dementia and Lewy body dementia had lower ‘living well’ scores than family carers of people with Alzheimer’s disease. Living with dementia is challenging for everyone. This study shows that it is harder to ‘live well’ with certain types of dementia. This helps us understand how to improve support for people with dementia and their family carers.

Read the full article: Published December 2022, BMC Medicine Journal

A large proportion of people with psychosis use cannabis, despite the negative impact that it has on their recovery. So far, a clearly effective way of helping young people in the early stages of psychosis to cut down their cannabis use has not been found. The CIRCLE trial investigated if an approach known as contingency management (CM) would be beneficial for this group. This approach involves offering voucher rewards for not using cannabis. It has been effective in addressing drug use problems in general, but there is not much evidence about its effects on cannabis use in those with psychosis.

A total of 551 service users with psychosis who used cannabis agreed to enter the trial. Half of the sample group was chosen by a chance method to receive CM. The other half formed a comparison group. The CM group received shopping vouchers if urine samples showed that they had not used cannabis for the previous week, measured over 12 weekly sessions. Participants could obtain £240-worth of vouchers if they did not use cannabis during the treatment period. The participants in both groups were also offered a six-session psychoeducation programme about the pros and cons of cannabis use and ways to reduce use of it.

The main comparison in the trial was the average length of time in each group before a relapse of psychosis occurred, which was recorded for each participant over 18 months after they joined the trial. The results found no difference between the two trial groups in this measure. Furthermore, there were no differences found between the groups in terms of the levels of cannabis use, clinical symptoms, or engagement with work or education. However, a cost-effectiveness analysis found an 85% chance of CM being more effective than the treatment-as-usual psychoeducation package, which appears to be because of the lower use of inpatient services by those receiving CM. However, it is difficult to understand why this was, because there was no drop in cannabis use. The results suggest that CM is unlikely to be clinically effective and that alternative treatments are still needed.

Read the full article: Published August 2019, Health Technology Assessment Journal

No lay summary in original article.

Read the full article: Published April 2019, The Lancet Psychiatry Journal

No lay summary in original article.

Read the full article: Published July 2023, International Journal of Bipolar Disorder

Relatives of people with severe mental health problems need better access to information and emotional support. The Relatives’ Education And Coping Toolkit (REACT) is a website designed to do this. It includes lots of information presented in text and video, an online forum for relatives to share knowledge and experience, a messaging system where they can ask questions in confidence and a comprehensive directory of contact details for national organisations offering relevant support. Trained relatives support the forum and messaging.

In the UK, we recruited 800 relatives of people with severe mental health problems: all were aged ≥ 16 years, had high levels of distress, had access to the internet and wanted help. We divided them into two equal groups: one group received REACT (including the resource directory), whereas the other group received the resource directory only. To ensure that there were no differences between groups at the start, relatives were allocated to the two groups randomly, so they had an equal chance of being in either group. We followed up with both groups at 12 and 24 weeks, and received data from approximately three-quarters of the participants.

This trial found that REACT was acceptable, safe and inexpensive to deliver (£62.27 per relative), compared with face-to-face interventions, and that relatives using it felt well supported.

However, once we accounted for missing data (relatives who dropped out of the trial or did not complete the follow-up questionnaires), there were no significant differences between the groups. There was no evidence that REACT increased relatives’ quality of life or saved money for the NHS.

Read the full article: Published June 2020, Health Technology Assessment Journal

Background

Insomnia in adolescents is common and is associated with poor mental health including anxiety and depression. Although common, insomnia in adolescents with mental health problems is rarely treated. We do not know whether treating adolescent insomnia will be helpful or whether this might have any effects on their mental health.

What we did?

We offered young people aged 14-17, with insomnia, attending specialist child and adolescent mental health services an online sleep intervention (Sleepio).

We asked young people to complete assessments of sleep, mood and anxiety before and after the programme. We asked whether they were satisfied with the programme and if they would recommend it to other young people.

What we found:

• The thirty-nine adolescents who elected to use the sleep programme had very poor sleep. They spent an average of 9.6 hrs in bed each night but were only asleep for 5.1. hours.
• Three quarters were not having any treatment for their sleep. The remaining quarter were prescribed medication.
• Half of the adolescents completed the six session sleep programme. 84% found Sleepio helpful, 95% would recommend it to a friend and 37% prefered an online intervention.
• There were significant improvements in sleep, mood and anxiety after using Sleepio.

What does this mean

• Online sleep interventions for young people with mental health problems are acceptable and improve sleep and mental health

What next?

• Further well designed research is needed to fully establish the effects of online sleep programmes on the sleep and mental health of adolescents.

Read the full article: Published March 2020, JMIR Mental Health Journal

No lay summary in original article.

Read the full article: Published May 2020, Internation review of psychiatry journal

No lay summary in original article.

Read the full article: Published July 2021, BMJ Open

No lay summary in original article.

Read the full article: Published April 2020, Schizophrenia Bulletin

No lay summary in original article.

Read the full article: Published Sep 2018, BMC Health Services Research Journal