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Dementia

Dementia: evidence, experience and resources

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On this page you can find our blogs about different aspects of preventing and living with dementia. Many of them include research evidence and also reflections from people affected by dementia themselves or in supportive roles as carers, family members or health professionals. There are also links to helpful resources.

Page last updated on 13 March 2023 with a blog about a new project to find out what matters most to people with dementia and hearing conditions, which will seek the views of members of the public (see Taking part in research ).

You can either scroll through this page or click on any of the links below to jump to the relevant section:

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Preventing dementia

Preventing dementia: what’s the evidence?

In a blog Preventing dementia: what’s the evidence? (May 2022) James Garrard, Specialist Registrar in Geriatric Medicine, looks at the evidence on various drug and non-drug approaches to try and prevent dementia.

Many people look for ways to reduce their risk of dementia, which affects 1 million people in the UK. Cochrane evidence on drug and non-drug approaches to try and prevent dementia suggests that: aspirin and statins do not appear to reduce the risk of developing dementia, and vitamin supplements probably do not help either; blood pressure medications probably do not help reduce the risk of dementia in people who have had a stroke. It is unclear whether they are helpful for reducing the risk in other people; interventions to target more than one dementia risk factor do not appear to help; there is currently a lack of research following what happens to people taking part in studies for more than ten years. It is thought that up to 1 in 3 dementia diagnoses could be prevented. While some of the things known to increase the risk of dementia can’t be changed (such as age), there are up to 12 things we can potentially do something about – including drinking less alcohol, stopping smoking, and maintaining a healthy weight. 

Behind the headlines: can one in three dementia cases be prevented?

In a blog originally posted on the Alzheimer’s Research UK Blog, Behind the headlines: can one in three dementia cases be prevented? (August 2017) Kirsty Marais goes behind the headlines that 1 in 3 dementia cases could be prevented, unpacking what the Lancet Commission on Dementia found.

Do vitamin and mineral supplements have a role in preventing dementia?

In her blog Preventing dementia: do vitamin and mineral supplements have a role? (January 2019) Sarah Chapman takes a look at the evidence on vitamin and mineral supplements for preventing dementia or at least slowing cognitive decline.

Commonly prescribed drugs and dementia: should we be worried?

In a blog for people interested in memory, thinking problems and dementia, Commonly prescribed drugs and dementia: should we be worried? (April 2022), Jodi Watt (a researcher at the University of Glasgow) looks at the latest Cochrane evidence on whether a class of commonly-used medications (anticholinergics) might increase people’s risk of future memory problems, or even dementia.

Dementia is a global health concern, with the number of individuals living with dementia only increasing. Treatment options are limited, making it important to understand factors that might contribute to such memory issues. A Cochrane Review (published May 2021) found an uncertain, possible link between taking anticholinergic medications – which may be prescribed for conditions unrelated to dementia – and future memory problems or dementia. This risk may be bigger when more anticholinergic medications are taken. The benefits of anticholinergic medications may outweigh the possible risk of future memory problems in certain situations. However, people can be taking these medications for a long time and - in some circumstances - they may no longer need them. If you are concerned, you may wish to review your medication with your GP.

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Diagnosing dementia

Diagnosis by phone and video 

In Dementia diagnosis by phone and video: pitfalls and possibilities (May 2022), a blog for people interested in ways to diagnose dementia, and the use of remote methods of assessment, Lucy Beishon, specialist trainee in geriatric medicine and NIHR Academic Clinical Lecturer in Geriatric medicine, talks about the evidence, reflects on her experiences during the pandemic, and looks to the future.

During the pandemic, many of the face-to-face parts of assessing someone for dementia were replaced by telephone interviews and assessments. A Cochrane Review has shown that there are many tests available, but little evidence about their accuracy or how remote assessment compares with face-to-face. With changes in technology, we need more studies looking at how well the newer tests perform for diagnosing dementia, particularly using more modern smartphones, apps, and tablets. We need to carefully consider all the implications of remote assessments for patients, clinicians, and researchers before using them to fully replace traditional face-to-face assessments. Challenges include inequality of access to good technology and to health care which involves remote delivery.

A decade of evidence on diagnosing dementia

In Dementia diagnosis: a decade of evidence (September 2019, updated April 2022), a blog for clinical, research and lay readers, Dr Terry Quinn looks at the latest Cochrane evidence around testing for dementia.  Terry describes the Dementia Group’s ongoing work on dementia assessment and shares some thoughts on reviews of test accuracy.

During the pandemic, many of the face-to-face parts of assessing someone for dementia were replaced by telephone interviews and assessments. A Cochrane Review has shown that there are many tests available, but little evidence about their accuracy or how remote assessment compares with face-to-face. With changes in technology, we need more studies looking at how well the newer tests perform for diagnosing dementia, particularly using more modern smartphones, apps, and tablets. We need to carefully consider all the implications of remote assessments for patients, clinicians, and researchers before using them to fully replace traditional face-to-face assessments. Challenges include inequality of access to good technology and to health care which involves remote delivery.

Identifying possible dementia using a questionnaire

In a blog for members of the public and the professionals who care for them, Diagnosing dementia: is a questionnaire (IQCODE) good enough? (July 2017, updated April 22), Terry Quinn and Jenni Burton summarise the findings of a series of Cochrane Reviews describing a structured questionnaire that is used to help identify possible dementia. The questionnaire is called the IQCODE (Informant Questionnaire for COgnitive Decline in the Elderly).

Writing a Cochrane Review about tests used in diagnosing dementia

In a blog for anyone interested in dementia diagnosis or the process of conducting a Cochrane diagnostic test accuracy review, Writing a Cochrane Review: my experiences of a diagnostic test accuracy review (March 2020), Dr Lucy Beishon from University of Leicester discusses her Cochrane Review and her experiences of working with the Cochrane Dementia and Cognitive Improvement Group.

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Living with dementia and managing symptoms

Supporting healthcare decision-making

What do you need to think about when supporting a loved one in deciding whether to have a test or treatment, especially when their health compromises their ability to do this for themselves? In the blog Informed decision-making: “we can” doesn’t mean “we should” (April 2018, updated August 2022) Kit Byatt, a retired geriatrician, and Sarah Chapman reflect on their discussion about this when Sarah’s mother, who had dementia, was offered statins. They also suggest some principles and questions that might help others who are supporting someone faced with a health decision.

Ideally, health decisions should consider the best available evidence, clinical expertise, and the person’s preferences, values and circumstances. Useful questions to explore when supporting someone faced with a health decision are: What are their priorities? What are their hopes, fears and preferences? What is in their best interest? What for them would be best and worst outcomes? Accepting the tests/treatment on offer may not always be in the person’s best interests. ‘Simple’ procedures, like blood tests, may not be simple at all for a particular person and those supporting them.

Drug treatments

See also the above blog on  Informed decision-making: “we can” doesn’t mean “we should” (April 2018, updated August 2022).

A decision aid to help you consider the options

The National Institute for Health and Care Excellence (NICE) has a helpful Decision aid: antipsychotic medicines for treating agitation, aggression and distress in people living with dementia (published 2018) which has information to help people living with dementia, their family members and carers and their healthcare professionals discuss the options.

Drugs for agitation

In the blog Drugs for agitation in people with dementia: benefits and risks (May 2022), written for the families of people with dementia, doctors Charlotte Squires and James Garrard talk about drugs used to treat symptoms of agitation and psychosis in people with diagnosed dementia. They reflect on what doctors and families together might want to consider when making decisions about trying these treatments.

People with dementia who experience symptoms such as agitation or psychosis might be offered medication to improve them. The potential benefits and harms of the drugs need to be considered in the context of what matters to the individual and their families. There is Cochrane evidence that antipsychotic drugs for treating agitation and psychosis in people with Alzheimer’s disease may lead to a small improvement but may also cause side effects, such as sleepiness, and/or slowing or stiffness of movements Symptoms of agitation and psychosis often get better with time, whether or not you treat them

Medicines for sleep problems 

There is “a distinct lack of evidence to guide decisions about drug treatment of sleep problems in dementia”, say the authors of the Cochrane Review Pharmacotherapies for sleep disturbances in dementia (published November 2020). In particular, they found “no trials of many widely prescribed drugs, including the benzodiazepine and non-benzodiazepine hypnotics, although there is considerable uncertainty about the balance of benefits and risks for these common treatments”.

The authors did find that melatonin (up to 10 mg) or a melatonin receptor agonist may have little to no beneficial effects on sleep.

However, orexin antagonists probably have some beneficial effects on sleep and trazodone may have some benefits too.

No serious adverse effects (harms) were reported in the studies. However, the studies did not include many people – so larger, high-quality trials are needed, and it’s important that these trials carefully look at potential side effects.

You can read a Cochrane Clinical Answer about this review: “For older adults with Alzheimer’s dementia and sleep disturbances, what are the effects of orexin antagonists?”

As for alternatives to medicines for sleep problems, the authors of a Cochrane Review on Non‐pharmacological interventions for sleep disturbances in people with dementia (published January 2023) have found an evidence gap here too. They conclude “Despite the inclusion of 19 randomised controlled trials, there is a lack of conclusive evidence concerning non‐pharmacological interventions for sleep problems in people with dementia.” However, the evidence suggests that “physical activity interventions, social activities, carer interventions, and multimodal interventions may slightly or modestly improve night‐time sleep in people with dementia.”

Rivastigmine

In the blog Rivastigmine reviewed: doubts about dementia drug, nurse Helen Cowan reflects on Cochrane evidence on rivastigmine and the use of this drug in practice.

Drug withdrawal

In the blog Drug withdrawal in people with dementia: what we know (July 2017, updated August 2022) geriatrician Kit Byatt considers the state of the evidence on drug withdrawal in people with  dementia.

Non-drug therapies

Activities

In the blog Activities for people with dementia: what can evidence and experience teach us? (December 2020, updated July 21), written for those caring for people with dementia, Sarah Chapman looks at evidence on personally tailored activities for people with dementia and shares insights from her own experience and those of others. The blog also includes a list of books that Sarah found helpful.

Two Cochrane Reviews looked for evidence on personally tailored activities for people with dementia, living at home or in long-term care. There is some low-certainty evidence that there may be benefits, but both reviews highlight a lack of reliable evidence to guide practice. Tapping into others' personal experience of engaging people with dementia in activities can be helpful. Experiences and ideas shared by an online community of people are included in this blog.

The Cochrane Review Cognitive stimulation to improve cognitive functioning in people with dementia (January 2023) has evidence on cognitive stimulation, which the authors describe as “an intervention for people with dementia offering a range of enjoyable activities providing general stimulation for thinking, concentration and memory, usually in a social setting, such as a small group”. They point out that its broad focus and social elements make it different from cognitive training and cognitive rehabilitation. The people taking part in the studies had mild or moderate dementia.

The review authors found that cognitive stimulation probably results in small benefits in cognition (the general ability to think and remember) at the end of a course, compared to usual care/unstructured activities. They estimate that “this benefit equates roughly to a six‐month delay in the cognitive decline usually expected in mild‐to‐moderate dementia”. There were also improvements in people’s ability to communicate and interact socially and probably slight improvements in their wellbeing and mood.

While there are indications that there is more benefit when group sessions are twice-weekly rather than weekly, there is a lot more that needs to be found out about the effectiveness of different delivery methods and of multi-component programmes, and about longer term effects. No negative effects were reported.

Cognitive stimulation is recommended in NICE guidance, and the latest audit by the Royal College of Psychiatrists found that 96% of services now offer group cognitive stimulation therapy.

Pet therapy

The blog Pet therapy for older people in care homes: what’s the evidence? (January 2020) looks at the evidence on pet therapy for older people, including people with dementia, in care homes and day-care facilities.

Two recent systematic reviews have highlighted the lack of robust evidence on the effects of pet therapy on older people in care facilities, including people with dementia. Qualitative evidence in one review offers some understanding of the potential benefits, harms and challenges – and suggests that some, but not all, may be likely to benefit. The use of robotic pets for pet therapy offers an alternative to live animals, but more evidence is needed about the effects of both.

Art therapies

In the blog Arts therapies for people with dementia: “where words leave off, music begins” (published July 2017) Jenny McCleery, Consultant Psychiatrist and Joint Co-ordinating Editor of Cochrane Dementia and Cognitive Improvement, looks at Cochrane evidence on creative arts therapies for people with dementia.

Reminiscence therapy

In the blog Reminiscence therapy for people with dementia. Do memories matter? (June 2018, updated August 2022) dementia care practitioner and researcher Bob Woods talks about reminiscence therapy and the evidence which he and his colleagues brought together in their Cochrane Review.

Reminiscence therapy involves discussing memories and past experiences, using tangible prompts such as photographs or music to evoke memories and stimulate conversation.   A Cochrane Review concludes that the effects of reminiscence interventions for people living with dementia and their carers vary, and differ across settings, with their use in care homes showing the widest range of benefits. NICE (The National Institute for Health and Care Excellence) recommends that group reminiscence therapy be considered for people living with mild to moderate dementia. No recommendation is made concerning individual reminiscence therapy.

Social living models

In her blog Social living models for people with dementia: future ways of living well at home? (July 2017) Carrie Jackson from the England Centre for Practice Development looks at innovations in supported care in the community, social living models, that might help people to live well with dementia.

Psychological treatments for depression and anxiety

The Cochrane Review Psychological treatments for depression and anxiety in dementia and mild cognitive impairment (published April 2022) found that:

      • “Psychological treatments based on cognitive behavioural therapy (which focuses on changing thoughts and behaviours) probably have small positive effects on depression, quality of life and daily activities in people with dementia or mild cognitive impairment (MCI).
      • There is not enough evidence to know whether any psychological treatments are helpful for anxiety in people with dementia or MCI.
      • More evidence is needed about different types of psychological treatments and which treatments may be best for which people”.

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End of life

Tube feeding

In the blog Tube feeding for people with severe dementia: making decisions (updated December 2021), Charlotte Squires, a trainee doctor in older adult care, reflects on issues with eating for people with severe dementia and options for supporting them, including new evidence on tube feeding. Sarah Chapman and friend Sue share experiences from supporting their mums with dementia.

Take-home points: Supporting someone with a poor appetite, difficulties with swallowing or other problems with eating is complex and can be very emotive A Cochrane Review has found that the effects of tube feeding on quality of life, pain, nutrition, mortality and survival are uncertain, while there is evidence that it is probably linked with a higher risk of pressure ulcers People with dementia, their families and carers need access to clear, balanced information, ideally as part of advanced care planning, but also later on if this has not been possible

Helping you decide

There is a decision aid on this from NICE – Decision aid: enteral (tube) feeding for people living with severe dementia (published 2018). It has information to help people living with dementia, their family members and carers and their healthcare professionals discuss the options.

Talking and learning about dying

In the blog Talking about dying: better conversations at the end of life (August 2022) Sarah Chapman, whose Mum died during the first lockdown, reflects on the text conversations she had with her Mum’s carer about her dying. She also talks about recent evidence on effective communication between health professionals, those who are dying and their families and about our need for knowledge of ordinary dying when many of us don’t witness a death until we are older adults ourselves. The blog also contains sources of information and support for non-medical people and health professionals.

•Many people lack knowledge about ordinary dying. This can add to our distress when faced with our own dying or that of someone we love. It’s helpful to talk about it, and to make use of some of the good resources now available. •Good communication between healthcare professionals and people who are dying and those close to them is fundamentally important. •Evidence-based recommendations for healthcare professionals having end-of-life conversations with patients/families include: find out their perspectives before offering your own; mirror their words; make opportunities to discuss the future; be clear about uncertainties; show sensitivity. •It is now considered best practice for all clinicians to have training in end-of-life communication and there are tools to help, such as the REDMAP (Ready, Expect, Diagnosis, Matters, Actions, Plan) framework.

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Support for carers of people with dementia

KMorley Is anybody there colour
Care support: is anybody there? By Karen Morley.

In the blog Carers of people with dementia: with them, through to the end of it (July 2017) Sarah Chapman looks at the state of the evidence on interventions that might help carers of people with dementia and talks to Justine about her experience.

In her blog Carer at the end of the line: evidence and experience of telephone support (June 2019, updated August 2022) Karen Morley reflects on the lack of connections for her when she was caring for her mother, looks at the evidence for telephone support and support by other modes, and gives a snapshot of her life as a carer, in four phone calls.

Sources of information and support for carers include:

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Taking part in research

Dementia and hearing conditions: what do we need to know? 

This blog introduces a new project (from March 2023) to find out the most important questions to research for people with dementia and hearing conditions. There will be opportunities for the public to take part.

Take-home points Many people are living with both dementia and hearing conditions and the combination can create additional difficulties. Hearing impairment is one of the main modifiable risk factors for developing dementia A James Lind Alliance Priority Setting Partnership (JLA PSP) has been launched which will look at the combined impact of dementia and hearing conditions The PSP will have input from people living with these conditions and those involved in their care, to identify the most important unanswered questions, establishing priorities for future research There will be opportunities for members of the public to share their views through surveys and a workshop. You can follow the project at https://www.jla.nihr.ac.uk/priority-setting-partnerships/coexisting-dementia-and-hearing-conditions/ and on Twitter @DementiaHearPSP

Wendy Mitchell, who has young onset dementia, writes about taking part in dementia research and being valued again, in her blog I have dementia and I take part in research. Here’s why (July 2017).

If you’re interested in taking part in research:

      • The National Institute of Health Research page Be Part of Research has opportunities that you can search for by location and keyword (such as the name of a condition or treatment).
      • Alzheimer’s Research UK has opportunities to take part in research and information about dementia research.
      • Cochrane Crowd is Cochrane’s citizen science platform. Anyone can join and no previous experience is necessary.

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Some information and resources

We have listed some sources of information and support for carers in the section above – Support for carers of people with dementia

NHS and UK Government

UK charities

Dementia books

References (pdf)

Join in the conversation on Twitter with @CochraneUK or leave a comment on the blog.  

Please note, we cannot give specific medical advice and do not publish comments that link to individual pages requesting donations or to commercial sites, or appear to endorse commercial products. We welcome diverse views and encourage discussion but we ask that comments are respectful and reserve the right to not publish any we consider offensive. Cochrane UK does not fact-check – or endorse – readers’ comments, including any treatments mentioned.

Sarah Chapman and Selena Ryan-Vig have nothing to disclose.


Sarah Chapman and Selena Ryan-Vig

About Sarah Chapman and Selena Ryan-Vig

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Sarah and Selena are Cochrane UK’s Knowledge Brokers. Their role involves sharing evidence in accessible ways with those who could find it helpful for their health decision-making, and encouraging engagement with it through social media. Sarah trained and worked as a nurse, has degrees in History from the Universities of Oxford and Reading, and worked in health services research before joining Cochrane UK in 2007. She is a recent cochlear implant recipient (2021) and is a Patient Ambassador for the COACH Trial, a randomised controlled trial of cochlear implantation versus hearing aids in adults with severe hearing loss. Sarah tweets @SarahChapman30. Selena has a psychology degree from the University of Bath and has previously worked for a national charity that provides support for young women. With a colleague, Selena delivers interactive sessions to students from Years 10 to 13 to teach about evidence-based practice and to encourage critical thinking, particularly around healthcare claims made in the media.

Dementia: evidence, experience and resources by Sarah Chapman and Selena Ryan-Vig

is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International

1 Comments on this post

  1. Excellent overview. Thank you.

    Charlotte Rode / Reply

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