This report published by the Alzheimer’s Society brings together views of more than 3,500 people with dementia, carers and the public on what it is like to live with dementia. It provides an insight into the gap between the things that people living with dementia need to live well and their day-to-day reality.

Download Turning Up the Volume: unheard voices of people with dementia

The report containsthe findings from Alzheimer’s Society’s largest-ever survey with people with dementia to hear their views and experiences of what daily life is like.

This ambitious and innovative piece of research, conducted by Ipsos MORI, has people affected by dementia at its heart. Through their words you’ll hear the real story of what it’s like to live with dementia, or be an unpaid carer, in England, Wales and Northern Ireland today. It also highlights what the general public thinks and feels about the condition.

The report is based on four strands of research: a survey of 966 people with dementia; 32 in-depth interviews with people with dementia including those from different ethnic and social groups; an online survey of 500 unpaid carers; and an online survey of 2,356 adults aged 16-75 in the United Kingdom.

The key findings of the research include:

• Almost half (48%) of people living with dementia worry about becoming a burden
• Over a quarter (27%) of carers for people with dementia feel “cut-off from society”
• 41% of the public disagree it’s just as easy for people with dementia to play an equal part in society as anyone else
• Only 17% of carers agreed that ‘there is enough support available for those who care for people with dementia’

Key themes from the research highlight that a stigma around dementia; some people living with the condition believing the public don’t understand their symptoms, or how to interact with them.

The Dementia Atlas is an interactive map that plots data about dementia care and support, allowing people to compare the quality of dementia care across the country.

The data is grouped in themes based on NHS England’s well dementia pathway which serves as a framework to ensure people with dementia have a better experience of health and social care support from diagnosis through to end of life.

Access the map at https://shapeatlas.net/dementia

The Dementia Atlas contains an ‘Indicators’ panel which holds a range of data organised by themes as follows:

Preventing well
People can reduce their risk of dementia by living healthier lives. The earlier healthy behaviours are adopted the more likely a person is to have more years free from Illness, disability and frailty.

Indicators

• Smoking prevalence
• Hypertension prevalence

Diagnosing well
How many people within your local area, have been diagnosed with dementia?

Indicators

• New patients with dementia who have had a blood test recorded
• Dementia prevalence: ages 65+
• Dementia prevalence: all ages

Supporting well
More care and support for people with dementia, their families and carers should be provided out of hospital within people’s local communities to avoid unnecessary emergency admissions.

Indicators

• People with dementia using inpatient hospital services
• Emergency admissions

Living well
We want every person diagnosed with dementia to receive meaningful care following their diagnosis. Find out how many dementia Friends are in your area and whether your community is Dementia Friendly.

Indicators

• Care reviewed in the last 12 months
• Dementia Friends
• Dementia Friendly Communities

Dying well
In England, approximately 480,000 people die each year. One in 10 of these people will have dementia. One in three people who die after the age of 65 have dementia. All health and care staff who support dying people must be capable and compassionate in treating people with dementia.

Indicators

• Mortality rate
• Death in usual place of residence

This report published by the All Party Parliamentary Group (APPG) on Dementia examines the scale of difficulty faced by people living with both dementia and other health conditions, and how the health and social care system can provide holistic, person-centred care and support for this growing body of people.

Download Dementia rarely travels alone: living with dementia and other conditions

There are 850,000 people in the UK living with dementia, 42,000 of whom are under the age of 65. Many people with dementia also live with one or more other health conditions. Studies have shown that:

• 41% have high blood pressure
• 32% have depression
• 27% have heart disease
• 18% have had a stroke or transient ischemic attack (mini stroke)
• 13% have diabetes (Barnett et al, 2012 ^[1] ).

This inquiry led by the APPG has brought to light the scale of difficulty faced by people living with dementia and other health conditions. Despite significant progress to deliver integrated care services and support, the health and social system frequently treats conditions in isolation so that people with dementia and other health conditions receive disjointed, substandard care and treatment. Key findings from the report include:

• 7 in 10 people living with dementia are also living with another medical condition. The severity of someone’s dementia can have consequences on their ability to manage their other conditions
• The current health and care system is fragmented and does not have the capacity to manage the complexity of these multiple conditions. Conditions are often treated in isolation from one another which can lead to disjointed care and confusion with medication management. It can also result in avoidable hospital admissions
• The Care Quality Commission (CQC) inspects individual providers rather than care pathways
• One of the biggest challenges facing society today is building a health and social care system that can provide holistic, person-centred care for people living with multiple conditions
• Without radical change, the current health and care system will consign thousands of people to substandard care and a poor quality of life, wasting millions of pounds in the process

The report identifies the changes needed across the healthcare system so that the NHS can meet the challenge of caring for people living with dementia and other conditions, supporting them to live fulfilled lives. These include:

• Public Health England should mandate a dementia component in the NHS Health Check for people aged 40 to 65 years old to enable people of all ages to take action to reduce their risk of dementia.
• The Quality Outcomes Framework should be revised by the relevant bodies to ensure people with dementia and comorbidities receive a minimum of one GP-led holistic review of their care and support per year.
• The Royal Pharmaceutical Society should develop new guidelines on polypharmacy for England that address how to treat people with dementia living with multiple long-term conditions.
• Public Health England should include data on dementia and common comorbidities in the Dementia Intelligence Network to provide health and social care commissioners with the data to commission integrated care pathways.
• CQC inspection regimes should assess the quality of care pathways across health and social care settings alongside the performance of individual providers

References

1. Barnett et al (2012) Epidemiology of multimorbidity and implications for healthcare, research, and medical education: A cross-sectional study. Lancet, 380, 37–43.

This report published by the International Longevity Centre demonstrates that a failure to prevent, diagnose, and treat depression, diabetes and urinary tract infections in people with dementia could be costing the UK’s health and social care system up to nearly £1 billion per year.

Download Dementia and comorbidities: Ensuring parity of care

The report shows that people with dementia are less likely to have cases of depression, diabetes or urinary tract infections diagnosed, and those that do are less likely to receive the same help to manage and treat these comorbidities.

The report also finds that the failure to prevent, diagnose, and treat comorbidities in people with dementia is leading to this group having a reduced quality of life and an earlier death than people who have the same medical conditions, but do not have dementia.

The report highlights how hospital in-patients with dementia are over three times more likely to die during their first admission to hospital for an acute medical condition than those without dementia. It also reveals that four of the five most common comorbidities people with dementia are admitted to hospital for in the UK are preventable conditions – a fall, broken/fractured hip or hip replacement, urine infection and chest infection.

The report identifies six key areas which appear to be leading to the discrepancy in health outcomes for people with dementia and comorbidities:

1. Atypical symptoms. People with dementia often present atypical symptoms which may lead to carers and medical professionals interpreting these problems as worsening dementia and neglecting other conditions as a potential cause.
2. Communication difficulties between medical professionals/carers and people with dementia, and between medical professional themselves, leading to lower standards of care.
3. A failure by the health system to recognise the individual as a whole, instead focussing on the person as a patient with a given diagnosis, leading to the optimisation of care for dementia while the individual continues to deteriorate because of poor management of a comorbid condition or vice versa.
4. A knowledge gap of hospital staff and carers in caring for people with dementia and comorbidities.
5. Poor medication management relating to how people with dementia’s medications are prescribed, monitored, administered and/or dispensed.
6. A lack of support to aid self-management and poor 

The report sets out the following recommendations to ensure that parity occurs:

1. The National Institute for Health and Care Excellence (NICE) must update its condition specific guidelines to take into account the needs of a people with dementia in order to ensure this group receive the same level of care as the rest of the population.
2. Care homes should modify the care plans of residents with dementia to include checklists covering the symptoms of common comorbidities (such as UTIs) to help ensure early diagnosis and treatment.
3. Health professionals must involve people with dementia, their carers and families in every decision about their care to improve both the diagnosis and management of comorbidities.
4. Health Education England should consider broadening its tier one dementia awareness training to include how dementia may affect care for both short and long term conditions.
5. Health trusts should develop comprehensive catheter action plans, based around staff education and training, to reduce the incidence of UTIs in people with dementia through unnecessary catheter usage.
6. The Care Quality Commission (CQC) should consider making it mandatory for care homes to undertake annual check-ups for residents with dementia and diabetes where their blood glucose levels, cholesterol levels and vision are monitored.
7. Clinical Commissioning Groups (CCGs) should commission a wide range of psychological therapies at a suitable capacity to ensure that GPs are not reliant on drugs to treat depression in dementia patients.

Active Minds produce a suite of activity products to assist people with dementia in leading active, engaging and fulfilling lives – enjoying activities that are meaningful to them.

The dementia activity resources include:

• Art Activities
• Jigsaw Puzzles for all levels of dementia
• Dementia Games designed for dementia
• Exercise products to help people with dementia exercise
• Reminiscence tools for one to one and group activity
• A selection of packs designed for care homes

Active Minds was set-up as a social business with a mission to create positive, well-made, human-centred and evidence-based activity products and games with an ambition to offer more people a better quality of life.

Active Minds follow a design process that ensures all of our dementia games, activities and resources are inspired by, and meet the needs of, people living with dementia, their family, carers and the networks that surround them.

Active Minds is a company built on years of research and personal experience. A close working relationship with Barchester Healthcare and Kingston University has allowed Active Minds to bring together knowledge, experience and research to create some unique activity products and games designed for people with dementia.

The Daily Sparkle is a professionally written daily and weekly reminiscence and activity tool supported by the UK’s leading care organisations such as the NHS, AgeUK and DementiaUK.

The Daily Sparkle is full of articles, quizzes, old news stories, gossip, puzzles, singalongs and entertainment geared towards stimulating the mind and improving memory.

The Sparkle is actually designed for ‘general elderly’ and ‘early to mid stage dementia’. Many older people with dementia will be able to read and enjoy the Sparkle. Others will enjoy having it read to them.

The Daily Sparkle is especially designed to stimulate personal memories. By using the scientifically proven therapeutic benefits of reminiscence your clients can delay or reduce the symptoms of dementia and gain a wide range of health benefits.

Key features:

• Easy and fun to use
• Builds relationships between staff and residents, resident with resident, and even between care staff.
• Flexible– suitable for group sessions, with residents confined to bed and as casual conversation.
• Comprehensive ‘quick start’ guide make the most of the features and to be the basis of a simple reminiscence training
• Visitors love using The Sparkles to enhance their interactions.
• Orientation – clear references to the day’s date help maintain a link to the present
• Perfect for group reminiscence sessions – helps to build community
• One-on-one tool – can be read to the resident at their bedside
• Vivid images offer an alternative to the written word
• Large, clear fonts so residents can read unaccompanied
• Branded for YOUR home – your name on the cover impresses visitors and the CQC and is a great marketing tool Include references to this on your own website
• “Your News” template can personalise editions with your own home’s news – birthdays, trips, menus
• Free trial – try before you subscribe

The Daily Sparkle is produced by Everyday Miracles Ltd., a social enterprise that trades for the benefit of people and the planet.

Find out more at www.dailysparkle.co.uk or call 0800 228 9698.

This joint declaration signed by signatories across government, health, social care and the third sector sets out a shared commitment to deliver good quality post-diagnostic dementia care.

Read the Joint declaration on post-diagnostic dementia care and support

Key signatories to the declaration include the Department of Health, NHS England, the Local Government Association, Public Health England, Health Education England, the Association of Directors of Adult Social Services and the Royal College of General PractitionerDecdecs.

The declaration aims to ensure:

• the views of people living with the effects of dementia and their families and carers are taken fully into account when determining the nature of post-diagnostic services offered, with high quality personalised care provided in line with individual needs and preferences
• access to holistic, integrated and effective post-diagnostic support is available for all, which takes into account age, ethnicity, diagnosis and co-morbidities
• the health, physical and emotional needs of families and carers are fully recognised, and their views are taken into account, especially at times of change. They are supported by receiving appropriate information and training on caring for someone with dementia and given access to appropriate support to meet their needs
• people living with the effects of dementia, their families and carers, as well as health, social care and third sector professionals, are aware of what local services are available and how to access them, to enable people to live and die as well as possible with dementia
• appropriate evidence is available across health and social care on best practice in post-diagnostic care, what best meets people’s needs and what initiatives are cost-effective
• all professionals in health, social care and the third sector who support people with dementia have appropriate information, knowledge and understanding of the condition and what constitutes good quality post-diagnostic care services
• appropriate dialogue takes place on making the best use of resources to ensure that services are available. Partners across government, health, social care, the third sector and all other relevant agencies cooperate and collaborate to improve outcomes for people with dementia
• health and social care services are coordinated and fully integrated to meet the post-diagnostic needs of people with dementia and their families and carers, and
• people living with the effects of dementia and their families and carers are made aware of and given the opportunity to participate in relevant research.

Thrive is the leading charity in the UK using gardening to change the lives of disabled people.

Thrive help people who want to garden at home, on an allotment, in a community setting or who may to access our own structured horticultural therapy programmes.

Gardens provide restorative environments and getting outside promotes recovery from stress and helps restore the ability to focus attention. Gardening can lift moods and help people to connect with others, reducing isolation by forming friendships and improve communications skills.

Thrive run structured programmes of activities for people with dementia which focus on positive reminiscence, re-connecting with others including friends and family and gentle appropriate exercise and cognitive stimulation.

Thrive also run workshops in dementia care homes to encourage more people to take part in gardening and deliver training, support and information for professionals working with dementia patients.

A research programme underpins Thrive’s work to provide evidence and improve understanding.

Results from a piece of research which helped us pilot a new programme of horticultural therapy activities for people who were diagnosed with dementia before the age of 65.  The perceived benefits of the activities have now been assessed qualitatively and quantitatively and the results are available through this publication. Download it here.

This guidance is designed to be used by adult social workers specialising in dementia at all levels, from front line practitioners to senior social workers, social work supervisors and managers, to support them to deliver the best outcomes for the people with whom they work with.

Download A manual for good social work practice: supporting adults who have dementia

Social workers are increasingly at the forefront of developing asset and strengths-based approaches to working with people across adult social care, preventing and delaying the need for services and ensuring resources and support are in place. This places an ever greater emphasis on their ability to lead across and beyond their professional boundaries, working with the person, their carers and communities to achieve the best outcomes, including enabling citizenship and inclusion.

Legislative changes, such as the implementation of the Care Act 2014 and increased requirements relating to Mental Capacity Act judgements, are also increasing demands on social workers in their practice with people who are just beginning to experience the effects of dementia or related conditions and their families and carers.

This guidance will help social workers keep up to date with practice in relation to dementia, not just within social work but developments and innovation across the wider health and social care landscape. It is designed to assist its readers with the very practical and sometimes complicated issues that they may experience in their practice with adults who have different types and stages of dementia. It aims to assist the reader to reflect on what they do know, start to fill the gaps in the areas that are new to them and is a resource directory for the reader to use and inform their practice in supporting people living with dementia.

The over-arching ethos of the Care Act 2014 is embedded in this resource. There is deliberate emphasis upon person-centred, strengths-based social work which is in keeping with the clear message from the workshops about working towards and with people’s strengths and abilities. Social workers practice should be in keeping with an ethical value-base, but also with the principles running through the Care Act and its statutory guidance, which is why each section identified the relevant Care Act principles.