Dementia Atlas

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

Dementia Atlas

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

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Helping your loved one with dementia eat well

This flowchart published by Bupa UK offers some pointers for carers and relatives on how to help people with dementia to eat well so that they remain healthy and can continue to remain independent in their own home.

Original source: Bupa UK

Dementia can cause changes in people’s eating and drinking habits. You might have to remind your loved one to eat and drink regularly, and they may need help feeding themselves. Their appetite might not be as good as it once was, or they may no longer like foods they used to enjoy. You know your loved one best, and by slowly building up a picture of their new habits, tastes and what they do and don’t like, you can find ways to work with their new preferences to make sure they eat well and stay healthy.

The following flowchart illustrates some simple steps to get you started, with further information about each of the steps below.

Helping your loved one with dementia eat well

Step 1:

People with dementia sometimes lose interest in food. If possible, get your loved one involved in planning menus and preparing meals, or even just setting the table. This can help spark their interest and encourage them to eat well. Visual cues like salt, pepper and bottles of sauce on the table can prompt someone to eat.

Step 2:

Your loved one’s food preferences may change as their condition progresses, suddenly developing a dislike for (or struggling to recognise) foods that used to be favourites. Be flexible and allow them input into what they’d like to eat. They may be overwhelmed by too many options, though, so keep choices simple. For example, ask “Would you like some vegetable soup?” rather than simply “What would you like for lunch?”

Step 3:

As people with dementia sometimes lose their appetite, make sure their food is presented in an attractive way. Great cooking smells and colourful food will encourage them to eat, and a clear, traditional layout on the plate makes it easier for them to recognise what they’re eating. Give them plenty of healthy foods as well, to make sure they’re getting all the nutrients they need.

Step 4:

People with dementia sometimes struggle to use cutlery during a meal, so finger foods are ideal. If focus is a problem, serve small portions and keep the remainder warm. Larger portions will go cold before they can finish their food, which will take away from the pleasure of eating.

Step 5:

A calm environment is better for concentration, so try to remove any distracting music or noises while your loved one is eating to help them focus. Try not to make a fuss about any mess; it’s more important that they’re enjoying their food and eating well.

Step 6:

Sometimes people with dementia find it difficult to tell the difference between their food, the plate and the table, especially if they also have problems with their vision. Make it easier for them by using plates that contrast in colour with both the food being served and the table mats or cloth. It can also help if you describe the food so they know what they’re eating.

Step 7:

Always check that food isn’t too hot or cold before you serve it, as your loved one may have trouble judging temperature.

Step 8:

If possible, sit down and eat together so they can follow your lead. Encourage them to feed themselves, but help them use their cutlery if they’re finding it difficult.

Step 9:

You may have to remind your loved one to drink fluids regularly. Offer water and other drinks throughout the day to help them stay hydrated.Understanding how dementia affects people’s appetites and eating habits means you can take steps to help those you’re caring for eat well. By making mealtimes enjoyable and engaging for your loved one, and removing anything that could cause confusion or distraction, you can encourage them to take an interest in food and eat enough to get the nutrients they need.

Bupa UK have also produced a complementary suite of advice cards below. Click on the cards to view a larger image file.

Dementia advice cards be supportive

Dementia advice cards make food attractive

Dementia advice cards relax

Dementia advice cards offer finger food

 

 

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Better planning for car ownership and well-being in old age

This briefing paper published by the Housing Learning and Improvement Network (LIN) seeks to connect the body of knowledge around the significance of car ownership in achieving well-being for older people to those making decisions that may impact on car ownership among older people, in particular, those living in specialised accommodation.

Download Better planning for car ownership and well-being in old age

Drawing on a wide ranging review of the evidence base, the briefing paper examines the functional and psychosocial impact of car ownership in later life, especially in relation to sustaining independence and wellbeing for as long as possible, including those living in specialist retirement housing.

The briefing paper also explores the declining access to planning local public transport, in particular, outside urban areas, and challenges assumptions on the long term environmental impact against the benefits of older people being able to access health, social care and other public services.

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Integrated approach to identifying and assessing Carer health and wellbeing

This toolkit published by NHS England clarifies the new duties on NHS organisations under the Care Act 2014 and the Children and Families Act 2014, provides a template Memorandum of Understanding (MOU) to support joined up working locally, and includes examples of positive practice of work that have proven successful in supporting carers and their families.

Download Integrated approach to identifying and assessing Carer health and wellbeing

The toolkit was developed in collaboration with a wide range of partners and forms part of NHS England’s ongoing Commitment to Carers.

Carers are twice as likely to suffer from ill health as non-carers. More than half of those who provide more substantial care have suffered physical ill health as a result of caring, and more than 70 per cent of those caring round the clock have suffered mental ill health at some time.

Taking an integrated approach to delivering support for carers allows the NHS to develop new models of delivering care and allows different services to work together and respond more flexibly to the needs of individual carers and their families.

The video below provides an overview of how the integrated approach outlined in the toolkit can make a difference to Carers and their families. It invites us to spend a day in the life of Paul, as he seeks to balance his own health and wellbeing, work, and a social life, with his caring commitments.

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#DAW2016

This post shows social commentary about Dementia Awareness Week 2016 from Twitter using the hashtag #DAW2016.

Fix dementia care – NHS and care homes

Fix dementia care - NHS and care homesThis report published by the Alzheimer’s Society marks the second phase of a campaign looking at the experiences of people with dementia in a range of health and care settings. It contains the results of a survey of care home managers and the voices of people with dementia, their families and carers.

Download Fix dementia care – NHS and care homes

Seventy per cent of care home residents are living with dementia. Many will be in the later stages of the condition, may struggle to communicate, experience incontinence and live with a number of other long-term conditions. However, the Alzheimer’s Society research found that the rights of people with dementia under the NHS Constitution are not being respected.

The research also discovered that some GP practices are wrongly charging care homes, and the people who pay care home fees, for services that should be free on the NHS. In addition, people with dementia are often forced to wait months for vital secondary care like physiotherapy or mental health services. In their hour of need, some people with dementia, who have paid their taxes throughout their lives, are paying again to see a GP through their care home fees.

In the best examples, GPs have good relationships with care home staff and residents and do not charge to make regular visits to provide primary care. Access to secondary care services is also timely and effective, allowing people to manage their condition before reaching crisis point. In the worst cases, care homes are being charged up to £36,000 a year to provide services that should be free and available to all.

The report sets out recommendations for the government and NHS to improve the experiences of people with dementia in care homes, including:

  1. End charging for providing access to a standard primary care service. Alzheimer’s Society is calling for the government to clarify the GP contract to ensure that GP practices do not charge for delivering a standard primary care service. This should include a clear definition of ‘core’ and ‘enhanced’ services.
  2. Enforce the NHS Constitution to ensure that people with dementia living in care homes have equal access to secondary care services. Alzheimer’s Society is calling for CCGs and relevant NHS providers to develop effective local pathways to ensure that people with dementia who live in care homes have equal access to secondary services.
  3. Enforce the NHS Constitution to ensure that people with dementia living in care homes have equal access to mental health services. Alzheimer’s Society is calling for CCGs and community mental health trusts to develop effective local pathways to ensure that people with dementia who live in care homes have equal access to mental health services.
  4. Improve healthcare support for care homes. Alzheimer’s Society is calling for the government to support improvements in the availability of district and community nursing in care homes. This can help people with dementia receive better care, closer to home and reduce pressure on primary and secondary care.

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Doncaster Admiral Nurse service

Doncaster Admiral Nurse serviceThe Doncaster Admiral nurse service is a partnership initiative between the NHS, Doncaster Council and voluntary sector led by a new team of dedicated dementia specialists operating across the borough.

Three highly trained nurses and a clinical manager now work in people’s homes to provide a familiar point of contact for information, advice, support, education and training for the whole family.

Eight dementia advisors support the Doncaster nurses, working alongside all Doncaster GP’s. They provide advice, information and signpost people with dementia, and their carers, to local support services that provide help.

Admiral Nurses are specialist dementia nurses who give much-needed practical and emotional support to family carers, as well as the person with dementia. Admiral Nurses can support people throughout their experience of dementia, tailoring support to individual needs and challenges. The Nurses will give people the knowledge they need to understand the condition and its effects, the skills and tools to improve communication, and provide emotional and psychological support to help family carers carry on caring for their family member.

Each of the 5 locality hubs across Doncaster will have a dedicated Admiral Nurse and Dementia Advisor. It’s a pioneering service for the town bringing together specialist nursing and dementa advice to seamlessly act as a vital link between those who have dementia and GPs, local hospitals, care homes and end of life services.

The service is available to people living in Doncaster who have dementia, and their carers, family members and friends. Crucially, those diagnosed with dementia – or their families – can self-refer to the team. Managed by social care charity Making Space, the free to use service is available to anyone who is registered with a Doncaster GP. Referrals are also made by GPs and other health and social care staff.

Read more about the Doncaster Admiral Nurse service on the Making Space websiteDoncaster CCG website

One of the key advantages of the Doncaster Admiral Service is that is helps people to live independently at home for as long as possible. The service will also help reduce the number of emergency admissions to hospital, as the care of people with dementia will be more effectively managed where they live.

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South of Tyne and Wear Memory Protection Service

The South of Tyne and Wear Memory Protection Service provided by the Northumberland, Tyne and Wear NHS Foundation Trust is a specialist care led service with primary care support serving 84,000 people living in Sunderland, South Tyneside and Gateshead.

In brief

They have a single point of access manned by nurse practitioner duty workers who respond and direct patients and carers. A nurse will do initial tests then the patient sees the nurse and the consultant and continues for tests if needed at the hospital.

The service offers:

  • Comprehensive assessment and diagnosis
  • Support and advice to people and their families about coping with a memory difficulty
  • Treatment including medication when appropriate
  • Access to a range of non-pharmacological interventions such as support groups
  • Access to good quality information given as a personal information pack
  • Access to other services able to provide help and support
  • Contact for further assessment, information, help and support as needed even after you have been discharged.

The benefits to the scheme are that anyone can call for advice and support and it is available through a single number. There is choice about where the person can be assessed, specialist tests are provided close to home and an education package are available for both patient and carer to help them come to terms with diagnosis. The evidence shows people who attend the group adjust ‘fantastically well’. It costs £877 per patient per year without the education cost.

Detailed description

The Memory Protection Service (MPS) was commissioned in April 2012 as a diagnostic service for people of all ages who may have dementia. It is inclusive of all disabilities including learning disabilities. The aim is to provide local primary and community services to support early diagnosis and intervention for cognitive impairment.

The service was developed as an enhanced Primary Care diagnostic provision using GPs with Special Interest (GPwSI) to work alongside secondary care and provide the memory protection role for approximately 84,000 residents of South Tyneside, Gateshead and Sunderland.

The service provides a key access point to the dementia care pathway in each locality, ensuring that any contact or referral of a person with possible dementia is responded to appropriately. Either the carer or the patient will be transferred to appropriate services through the MPS if applicable.

The diagram below illustrates the dementia care pathway.

South of Tyne and Wear Memory Protection Service dementia care pathway

Across the localities there are 155 GP practices of varying size. One of the challenges of developing the service has been negotiation about pathway transitions with three different localities and three different Community Mental Health Teams.

Prior to referring to the MPS, the patient’s GP is asked to complete a cognitive screening. Referrals, including self-referral for each locality are written or emailed from various sources such as liaison teams, intermediate care facilities and other primary care staff. Generally, the patient is informed that they have been referred.

All referrals are first screened at the MPS single point of access by one of the nurse practitioner duty workers who triage the referral. At this point a small number may be redirected to the secondary care Community Mental Health Team if it is apparent that the person’s needs are more complex than routine diagnosis. The duty workers are also responsible for initiating the pathway for self-referrals and if necessary, for managing further information requests in order for a referral to be allocated. The duty workers also respond to all other enquiries from service users, members of the public and GPs, and undertake all routine telephone reviews.

A nurse will do a full assessment with cognitive testing using the Addenbrookes Cognitive Examination, ACE-III. The patient will then see the consultant and the nurse. The consultant might conduct a brief physical examination or assess mood or ask further questions. The consultant will explain initial findings and the intended plan at that point. The patient might be sent for a scan, other concerns discussed or a referral back to the GP made, for example in the event that the patient is depressed.

A letter is generated from the diagnostic assessment and the patient will get a copy. The default is that the patient gets a copy of all letters unless they have specifically said they do not want them. These will be the same as the letters the GP receives. All letters have been reviewed to make sure they are jargon free.

In accordance with current NICE guidance everyone for whom a diagnosis of dementia or borderline dementia is expected will have at least a CT scan, but they might also receive an MRI, DAPT or PET scan. The acute Trust completes the scans – the timeliness of the outcome response can be variable across localities.

Once all results and assessments are complete a diagnostic appointment will be offered with either a Consultant or GPwSI. The diagnostic appointment delivers the diagnosis supported by the scan results and other assessment information. Generally this will support what the Consultant has already provisionally agreed at the professional MDT.

At the diagnostic review, pre-diagnostic views are reconsidered and the patient’s symptoms reviewed to see if there have been any changes or additional risks. The diagnosis is delivered and treatment options discussed as well as support and local groups available, lasting power of attorney, driving, etc.

A comprehensive letter detailing the diagnostic review discussion is completed. It can then be used as a plan of care for the patient. The MPS also shares it as instructed by the patient.

If the patient is to start on medication, this happens at the diagnostic review. The duty nurse will phone the patient in three weeks to check the patient’s interaction with the medication. If indicated, the consultant will write a new prescription which is sent to the patient. Titration is managed through this contact. If the patient’s condition has changed or they are not tolerating the medication well, the patient will be brought in or seen in their home.

Twelve weeks after the diagnostic review all patients are offered a post diagnostic appointment with the nurse. At this point access to education and support groups are discussed and offered again. Should the patient decline the offer of group work they will be signposted to voluntary services within their locality for extra support and will be discharged back to the GP. At any point throughout the process if the patient deteriorates or is unable to tolerate medication, a review appointment will be offered with either the GPwSI or the consultant. An alternative care plan will be implemented which may include occupational therapy or psychology involvement.

There are two groups that patients may opt into; an education group for patients and their carers, which is a valuable early journey peer support system, and a “Coping with Forgetting” closed group run by the clinical psychologist with another member of staff just for patients themselves. There are six to eight places and the group meets for an hour and a half each week for six to eight weeks. The purpose of the group is to support the person to come to terms with the diagnosis of dementia.

All groups are evaluated and the outcomes are always positive. Groups have a steady flow of uptake throughout the year. The evidence is that people who attend the group adjust fantastically well.

Discharge is completed between nine to sixteen weeks should there be no complications throughout the process. The team are currently addressing areas that delay the process to ensure that the service is more efficient.

There is some scope to trim the length of the process, particularly with streamlining appointments for scans, psychology, etc. and contracting for more timely results.

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Assessment of Cardiac Status Before Prescribing Acetyl Cholinesterase Inhibitors

The aim of this guidance is to support consistent, evidence-based practice in the cardiac pre-assessment, monitoring and safe prescribing of acetylcholinesterase inhibitors (AChEIs) for people with dementia. It is intended for clinicians responsible for initiating and monitoring the use of AChEIs and will be useful for commissioners to help inform the development of the dementia care pathway and contracting arrangements with provider services.

Download Assessment of Cardiac Status Before Prescribing Acetyl Cholinesterase Inhibitors

Acetylcholinesterase inhibitors (AChEIs) are recommended as first-line treatment for Alzheimer’s Disease. These drugs can slow heart rate which could potentially result in an increased risk of falls. Given that the majority of people with Alzheimer’s Disease are older people and the possible consequences of a fall are more likely to be severe, it is of particular importance that appropriate assessment of a person’s cardiac function is carried out routinely before starting AChEIs. This will enable potential contraindications to be identified and alternative treatment options to be explored if needed.

There is however no definitive national guidance on the required assessment to identify cardiac abnormalities before initiating AChEIs and as a result there is considerable variation in current practice.

The authors reviewed the evidence base for cardiac monitoring, including use of routine electrocardiogram ECG compared with routine pulse monitoring, prior to AChEI initiation. They found that there was no compelling evidence that undertaking a routine ECG in all patients prior to initiation of AChEIs was either justifiable or effective.

The authors recommend that service providers and commissioners should consider adopting the pathway (see Appendix II) proposed by Rowland et al (Rowland, 2007) which incorporates taking a detailed cardiac history, careful pulse checking and subsequent monitoring. In addition to this pathway, the authors recommens use of ECG as standard monitoring in certain ‘higher risk’ groups of patients (see Section 6.3) as an additional safety check.

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Dementia rarely travels alone: living with dementia and other conditions

Dementia rarely travels alone: living with dementia and other conditionsThis 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.

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