Work of the health and care champion group

The health and care champion group has identified 15 key areas where it is taking forward work, which cover the 14 actions published in the Prime Minister’s dementia challenge, plus some additional areas that are crucial to people with dementia and their carers.

To deliver the actions, the group are working directly with people with dementia and their carers, professional bodies and the voluntary sector to coproduce an action plan.

The group would also like to gather people’s views on how health and care for people with dementia and their carers could be improved. The comments that people make will help inform the work of the champion group. Have your say.

These are the key areas that the group is focusing on:

Improving diagnosis rates

The National Dementia Strategy identifies the central role that diagnosis plays in the quality of care that people receive and diagnosis rates need to increase.

Better care in all settings

Dementia care is not only about delivering specific services designed for people with dementia but about ensuring that the range of health and care services in different settings are ‘dementia friendly’ and make reasonable adjustments to ensure people with dementia receive high quality services.

Support for carers and families

The impact of supporting a person with dementia cannot be underestimated.

A wider approach to information – a personalised information service that leads to the ‘no wrong door’ approach for people and families

The aim is for people of all ages with dementia and their family carers get an early diagnosis and the best advice and information or are signposted to the right point of access, no matter who they contact. Information is central to the personal care and treatment package and underpins the approach of ‘no decision about me, without me’.

Commissioning an enlightened health and social care workforce

This involves developing the whole health and social care workforce (in the statutory, third and independent sectors) to be positive, have the right level of expertise for their role, deliver excellent standards of care and have the confidence to involve people and families in designing care and support.

Reducing the inappropriate use of antipsychotic medication for people with dementia

The group aims to champion the ‘Call 2 Action’ co-ordinated by the NHS Institute to reduce prescriptions of antipsychotics to people with dementia and promote alternatives to allow them to live well in their home, including in care homes. The goal is for all people with dementia who are prescribed antipsychotic drugs to have a review of their medication.

Improving people’s living environment

Working with housing providers and care homes, and developing innovative solutions to help people stay at home are vital to helping individuals, couples and families living with dementia to stay together with the right level of personalised support.

Improve access to re-ablement and intermediate care services

People with dementia must have the same access to social care re-ablement services and health intermediate care services after a stay in hospital or to prevent admission.

A dignified death – end of life care for people with dementia

Everyone diagnosed with dementia will die with the condition and we know that access to high quality personalised end of life care for people with dementia is variable across the country.

The cultural and implementation challenge across the country

Varying practice in prioritising, diagnosing and caring for people with dementia exists among some groups so, alongside the specific actions such as diagnosis plans and hospital commissioning for quality and innovation (CQUIN), we need to understand the wider adoption and implementation context.

Develop a clear vision of what excellent health and care for people with dementia looks like

The National Dementia Strategy has used a series of statements about what people should expect, to communicate its ambition and vision. We have an opportunity to review and refresh these to provide a core summary of the high level ambition to transform the experience of people with dementia and their carers.

Develop integrated local performance management systems, monitored through Health and Wellbeing Boards and transparent to local citizens

Health and Wellbeing Boards provide a new and substantial opportunity to prioritise the needs of people with dementia – agreeing joint health and social care outcomes, monitoring frameworks locally and championing quality and an improved experience.

Building understanding and capacity about commissioning services for people with dementia in Clinical Commissioning Groups

CCGs will commission most of the health services that people with dementia will receive. We will identify ways to support CCGs to build up their capacity and capability to commission effectively. This may require a different model to that being developed in other clinical networks.

Develop a clear view about integrated working between health and local government

Develop a central theme in the workplan on health and social care, to understand what these elements mean for people with dementia. This needs to start with joint commissioning – joint between health and social care but also joint between people with dementia and their carers and the formal commissioners based on personalised care, including personal budgets where appropriate.

A communication and engagement plan

Co-ordinate communications and engagement work to maximum effect, managing input from No 10, Department of Health ministers and champion group members. This will be based on the revised vision and engagement with stakeholders.

The group will report to the Prime Minister this Autumn.

In Health and care

20 Responses to Work of the health and care champion group

  1. Alison says:

    Provide funding into a cure.
    Increase carers allowance – how can anyone live on £58 per week?
    Review the current rules on care funding per the Dilnot review.
    Implement specialised dementia teams within council home care and social work- one size does not fit all and personal experience is that homecare is designed for people with physical disabilities, not mental disabilities.
    Centralised area to provide ALL types of information for patient and carer on diagnosis, personal experience has shown that trying to find out what help is available is extremely difficult and stressful.

  2. David Lacy says:

    Better intergration of speicalist services (Memory assessment; CMHTe) with primary and social care – improved social day care and a variety of resources – better training for non specialist staff

  3. Yvonne says:

    The training for staff supporting individuals with dementia needs to be greatly improved and care managers need to have regular training and updates including some time giving hands on care to really understand the issues of a person living with dementia. Coordination between agencies need to be greatly improved and there should be more observation of the problems requiring support. Family carers are often left dealing with inadequate care and the safeguarding procedures are inadequate to protect those with dementia especially where there are no family overseeing the services being provided. There is a total lack of daytime activity support in the individuals home in some areas only day centres who are unable to provide individualised care. District nurses and GPs need much better training and to be much more proactive in dementia health care especially medication monitoring and dealing with dual diagnosis. We are still living in a society who put elderly people to bed at 8.30pm due to lack of paid evening care even with a personal budget. The personal budgets are often inadequate and there is often a fight to get them up to the correct level with the local authorities. All individuals who do not have family and who have dementia should have access to an advocate. There should also be a recognised qualification in living with dementia that includes both training in the classroom and hands on care which is run by family carers. There needs to be further public awareness of the illness that is ongoing and that looks at the different stages of the illness rather than the misconception that it is just old age. Incontinence services need to be improved so that knickers are provided rather than pads as the pads leak which causes unnecessary urine smells. Dementia care should be joined up and in the hands of trained individuals rather than generalists in social care. Further research into the efficacy of drugs, vitamins etc needs to be published widely.Family carers need much better support and not be expected to take on the coordination role when this is a full time job as the illness progresses.

    • Frank says:

      ; that their stories do not get the coaervge they deserve, when compared to knife and firearm crimes, and the recent looting and rioting. These young assessors are recovering from, and in some instances doing well because of, their care experience. I applaud them, and I applaud Matt. This is a personal response.

      • Dorothy says:

        Please plesae plesae look at Caring Companies as this is a loose term as many just dont care, its about the money and how many Dementia sufferers can be assisted in the smallest amount of time making more money for them. Many are not given quality time, the families not given the respite they require as Care Companies will not allocate the Staff to cover them. The Care Quality Commission have such an appalling reputation that Carers just dont bother to whistleblow as they know the CQC will ring ahead of a visit thereby Companies cover their atrocities before getting found out and go back to what they did as soon as CQC’s back is turned. Dementia patients in particular get a raw deal as the Care Companies use their disability to get away with treating them badly. Start at the grass roots and thats the care of each patient and a fair deal for Carers whom the majority of which last 5 minutes in this Industry because they and the people they Care for are treated so appallingly.

  4. Akshatha says:

    Dear Sam, what a wonderful edatociunal and inspiring article looking at all the lovely and inspiring people raised by grandparents and other relatives, kinship care and the children and carers must be given all the recognition and help they deserve. Thank you for pointing out the anomalies in a social and economic system that doesn’t seem to recognise grandparent kinship carers how very unfair this is.We are so happy and relieved since our darling little granddaughter came to live with us and I hope to get more and more involved in the struggle to get recognition for carers and their children. At the moment I am reading a lot online but hope at some point to start helping.

    • Anfane says:

      I have just retired after a exsvitnee nursing career of 43 yr s during which time I had a lot of experience with dementia and all that it entails. It is my contention that a lot of the problems with a person who has dementia is due to lack of understanding how they are perceiving the world and the lack of tolerance from the general population who seem to be lacking tolerance and basic good will.Society in general seems to need some sort of reformation to get in touch with some basic human qualities that would benefit everyone.As regards the day to day care of someone with dementia there is a need for a rethink about the way we support them and their carers.Because it makes sense for the person with dementia to stay in familiar surroundings and it is usually the carer that needs a complete break it would seem more sensible to put resources into putting carers into the persons home so the carer can get away and the dementia patient does not get a set back in having to stay in a place unfamiliar.We need to be talking more about how we can absorb suffers into our everyday life’s and educating people to not be afraid and involve people who are finding things confusing.Dementia does not have to be such a big deal if we approached it in a more generous and emotionally mature way. More and more of us will be facing this situation in the future and basically we need to grow up as a society and be more generous in how we regard each other and value our older citizens that have done so much and deserve our respect.

    • Anabel says:

      Norrms.There will be more and more people like yolsuerf who are taking the lead in deciding what needs to happen both locally and nationally.The problem is that many people still have a view of people with dementia as being largely helpless, and hopeless ..and that is a message sadly which is recieved and taken on board by people with dementia themselves very often, in the absence of more positive messages.I think it was Paolo Friere who said something along the lines of if people tell you often enough that you are useless, you begin to believe it We were very struck in our work around dementia freindly communities that the kind of support that people get post-diagnosis plays an important part in determining the extent to which you engage with your community, and with the rest of your life.So, on the the one hand, people who were given a message, even an implicit one that dementia is all about death, decay, destruction, decline and loss .. .compared to those who were encouraged to understand that it is possible to live a good life with dementia, despite the difficulties it can bring.Keep up the good work!

  5. Kim Barstow says:

    Dementia is now considered a serious public health problem. This is due to the growing numbers of people affected by the disease, the increasing life expectancy, along with the direct and indirect cost.
    The first ever national audit of dementia and many other reports make poor reading for care of patients in an acute hospital setting. 1 in 4 beds are now occupied by a patient with dementia and it appear that we are failing to deliver good individualise care.
    What we can say from our experience and is backed up by these many reports that staff have no or little dementia care training and subsequently do not have the confidence to handle challenging behaviour often associated with the disease, which is made worse by being in unfamiliar surroundings and around strange faces.
    This type of behaviour is very much challenging in an already stretched and over run workforce we appreciated that. But what we are asking is this behaviour psychotic, is this behaviour causing real significant harm to self or others? Let’s be realistic does this kind of behaviour warrant restraint? That by doing so would run the risk of causing significant harm or death. In this situation the common actions would be to call security and give haloperidol.
    Dementia patient can not make sense of what is happening as their reasoning is impaired but they will mirror behaviour, which is why we often see when security are called it can often makes the patient worse.
    We are not saying haloperidol can not be used but what we are saying is using haloperidol as a restraint needs to be so in accordance with the law and ethics.
    Mental health act / Capacity Act, Human rights act, The NMC / GMC
    And in our experience we often find there is no clear rationale for its use. The notes state patient was agitated haloperidol was given. Define agitation / aggression, it’s subjective, what I think and you think are two different things. Haloperidol is written up as a PRN – without any contact to the older person’s mental health team for a review or advice nor is a plan of action / review / regularity of base line observation noted and often this medication is to be given intramuscular (IM) rather than oral. We argue that insulin would not be written up PRN without consulting a diabetic specialist nurse / consultant nor would you give it without a clear rationale….WHY? I would guess because it’s a dangerous drug, how is haloperidol given to dementia patients any different?
    What we can say with confidence is this drug is being used as a first line defense instead of a last resort (this backed up by the reports) and in some situations as a just in case method he might just kick off later so I’ll give it now, woun’t stay still for a venflon he has sepsis, they keep shouting out and keeping all the other patients awake, she keeps wondering, he keeps trying to get out of bed and even more concerning we are learning that junior doctors are been pressurized to prescribe haloperidol by night staff who often exaggerate story’s and that being short staffed sways a lot of decisions as the problems are accentuated by lack of staff. Who is this a problem for you or them!
    But we continue to give haloperidol for behavioural and psychological episodes rather than a psychotic episode or when there is significant risk of harming self or others. We have noted that when this medication is been prescribed there appears to be no consideration to the type of dementia, Lewy bodies, vascular, the fact that the patient has diabetes that compromises the vascular symptom, any previous CVA etc, so when does restraint become abusive.
    Research shows that haloperidol is useful in reducing aggression but is associated with adverse effect, and there is no evidence to support the routine use of this drug for other manifestations of agitation in dementia.
    Lord Darzi’s High Quality Care for All….emphasizes the importance of keeping patients safe, stating that,
    “…Continuously improving patient safety should be at the top of the healthcare agenda for the 21st century. The injunction to ‘do no harm’ is one of the defining principles…… …safety must be paramount for the NHS. Public trust in the NHS is conditional on our ability to keep patients safe when they are in our care…”
    When haloperidol is used to manage behavioural and psychological episodes there are no benefits only the result of the side effects….
    Heading to negative impacts in the three main principles set out by Lord Darzi’s
    • patient safety,
    • clinical effectiveness and
    • the patient experience
    The Dementia Action Alliance add that every day up to five people die and four people suffer significant complications such as increased dementia symptoms, dizziness and unsteadiness with a greater risk of falls and injury as a result of been prescribed antipsychotic drugs.
    The research shows that haloperidol should not be used routinely to treat patients with agitated dementia (The Cochrane Collaboration: Haloperidol for agitation in dementia (review) Lonergan, Luxwnberg, Colford & Birks 2010 / Risk of Death with Atypical Antipsychotic Drug Treatment for Dementia Schneider, Dagerman & Insel 2005 JAMA / Medscape Antipsychotics Vary in Mortality Risks in Dementia Treatment / Banerjee 2009 Time for Action and many more). These symptoms can not be wished away they are part of the disease process just as in any other devastating disease.
    General hospitals are particularly challenging environments for people with memory and communication problems, with cluttered ward layouts, poor signage and other hazards. People with dementia in general hospitals have worse outcomes in terms of length of stay, mortality and institutionalisation. This impact is not widely appreciated by clinicians, managers and commissioners.
    The way forward and in line with the DoH – National Dementia Strategy Objective 8: (Chp 5) Improve quality of care for people with dementia in general hospitals, to development an explicit care pathway for the management and care of people with dementia in hospital.
    Part of this would be looking at agitated behaviour – a behaviour chart to describe and document baseline behaviour. This would improve consistency in assessment and be credible to judge the effectiveness of interventions also assisting decision making along with confirming if the behaviour is persistent or occasional. An A B C approach,
    • Antecedent
    • Behaviour
    • Consequences
    What we do know that works and the work we are doing with staff on our ward is a little compassion and understanding is key.
    • Its about putting the patient back at the centre of care
    • Empowering staff by giving them the tools / knowledge to deliver good quality dementia care
    • It doesn’t focus on the dementia as such, but focuses on the PERSON
    • And it gives these vulnerable people a voice.
    We achieved this by stepping into the world of the dementia patient and having empathy. We developed awareness sessions that we continue to deliver and throughout these sessions we get staff to experience feelings that a dementia patient would be experiencing. These are powerful sessions that get staff to stop and think about dementia, they begin to see the person and not the disease helping to reduces stigma. They not only raise awareness but a true understanding what dementia means.
    Some of the tools we have used and continue to use are ‘THIS IS ME’ leaflet allowing us a snap shot of the person with dementia life. Knowing as much as possible about the patient with dementia is key to unlocking their world. This information will allow us to individualise care and deliver good quality care that puts the patient at the centre and involves family, friends and carers.
    Along side the ‘THIS IS ME’ we use reminiscing. Reminisces has long been associated with the improvement of mood, cognitive stimulation and general behaviour function of people with dementia. Developing this is an important way of communicating and engaging with people with dementia allowing them to become the teller rather than the told, It’s empowering, it raises self esteem, it aids communication, it stimulates, it’s fun and it lifts mood and we know these tools work. They never asked for this disease…but they do need our help
    We are looking to set up a group for dementia care for the best way forward in an acute care setting. As the tower (old) part of James Cook is about to be modernized we have request that it be done so to create a dementia friendly environment, requesting door ways to the bay be painted bold, red toilet sets and grab rails, grab rails in the hall ways, exit doors to blend in with wall colour to make it difficult for wander sum patients to recognise thus limiting the risk of them wandering off the ward, and better signage with clear pictures are some of the examples we have requested after taking note of the Kings College London.
    This is a small drop in the river and hopefully will lead to the sea. This is to be rolled out across the trust but has you can appreciate it will take time and change can often become difficult. Developing the Care Pathway specifically for dementia patients is paramount in aiding that transition. It will keep the patient safe without causing harm and it will individualise care and hopefully lead to a positive outcome for patient with dementia and their family / friends and carers alike when entering an acute care setting.

    • linda williams says:

      dear kim ,how lovely to read your views on the care of people with dementia. i am a palliative community nurse and would love to take a course on understanding this illness more their is a degree course in plymouth uni but falling on deaf ears with my boss i would even be willing to pay my self and use my own leave time .you have inspired me to learn all i can and research more into this very compashionate based illness and i will endevour to look much more at the personal fabric of my pts more and have a holistic approuch in their special journey to ensure they are met with love dignity and compashion .

  6. Kim Barstow says:

    Quality, Innovation, Productivity and Prevention (QIPP)

    “All those who work on the frontline should be thinking carefully, and imaginatively, about how we can do things differently. The QIPP process is a home for this in the NHS and the way that we can implement the best and brightest ideas across the service. As the Prime Minister said: ‘Don’t hold back – be innovative, be radical, challenge the way things are done.”
    Andrew Lansley, Secretary of State for Health – 2 July 2010.

    Question
    Are hospital staff aware of the dangers when using antipsychotic medication such as haloperidol in patients with dementia during their stay in an acute hospital setting and is this medication being used abusively?

    What is dementia?

    Dementia affects people from all walks of life, leading to decline in memory, reasoning, communication skills and the ability to carryout activities of daily living (The National Dementia Declaration pg1). The cause of this disease is a result in structural and chemical changes within the brain that leads to the death of brain tissue. It is a terminal disorder with life expectancy been unpredictable as the disease can progress for 7 – 12 years (Department of Health 2009, pp15-17). Behavioural and psychological symptoms in dementia (BPSD) include agitation, repetitive questioning, shouting, depression, aggression, wandering and psychosis all of which are very common. In England and Wales they are new cases of dementia occurring every 3.2 minutes (Alzheimer’s Research UK 2008, pg.3).

    What is psychosis?

    Psychosis is not a condition but a symptom of other conditions. It is a term that is used to describe a mental condition where somebody is unable to differentiate between reality and their imagination. Commonly people with psychosis experience hallucinations, this is hearing or seeing things that are not there and or delusions, the person believes things that are untrue (Banerjee, 2009, pg.16).

    What is the difference?

    Banerjee (2009, pg.17) states there are questions as to whether psychosis in dementia is the same as psychosis in other illnesses. He further argues that psychosis is rare in dementia compared to the level of prescribing of antipsychotics and that it is clear these medications are being prescribed to address behavioural and psychological symptoms in dementia (BPSD), such as agitation, aggression, wandering, shouting, repeated questioning and sleep disturbance.

    Medications

    The first antipsychotic drugs was manufactured in the 1950s as a treatment for schizophrenia and known as the typical antipsychotics (first generation), to distinguish from the atypical antipsychotics that was developed in the 1990s. The atypical antipsychotics (second generation) have become much more commonly used than the typicals due to fewer side effects. Typical antipsychotics are associated with over sedation, hypotension, involuntary movements (including irreversible late onset tardive dyskinesia), Parkinsonian symptoms (rigidity, tremor and problems with walking) and the rare occurrence of cardiotoxicity (damage to the heart), high fever, and vascular collapse (neuroleptic malignant syndrome) (Banerjee, 2009,pg.16). These drugs are mainly licensed for the use in schizophrenia or bipolar disorder where there is psychosis (Banerjee, 2009, pg.16). However, these drugs appear to have only a limited positive effect and can cause significant harm to people with dementia. Conversely some people with dementia where a severe and complex risk has been identified there may be value in using these drugs (Banerjee, 2009, pp22-29).
    Yet it is clear that these medications are being prescribed to deal with behavioural and psychological symptoms in dementia (BPSD) rather than just for psychosis. As a consequence these medications are used as a first line response rather than been considered as a second line treatment when non-pharmacological approaches have failed. Therefore the use of antipsychotics means that the potential benefit of their use in specific cases is likely to be outweighed by the adverse effects of their use in general. The use of haloperidol amongst others antipsychotic drugs to treat BPSD are relatively common (Banerjee, 2009, pg.17). Nevertheless people with dementia tend to be much older, more frail have existing co-morbidities than the younger adults these drugs were designed for. Thus leading to being more susceptible to the side effects and as a result excessive use can lead to 1800 extra deaths as well as 1500 strokes each year (Banerjee, 2009, pg.28). The Dementia Action Alliance (2012, pp.1-2) add that every day up to five people die and four people suffer significant complications such as increased dementia symptoms, dizziness and unsteadiness with a greater risk of falls and injury as a result of been prescribed antipsychotic drugs.
    Lord Darzi’s (2008, pg.44) emphasizes the importance of keeping patients safe, stating that “…Continuously improving patient safety should be at the top of the healthcare agenda for the 21st century. The injunction to ‘do no harm’ is one of the defining principles…… …safety must be paramount for the NHS. Public trust in the NHS is conditional on our ability to keep patients safe when they are in our care…” In spite of this, the existing level of improper use of antipsychotic medication given to people with dementia signifies an important issue in terms of quality of care, with negative impacts in its three main principles set out by Lord Darzi’s ‘High quality care for all’, patient safety, clinical effectiveness and the patient experience (Banerjee, 2009, pg.34).
    NICE clinical guidelines 42 (2006, pg.34) state that pharmacological intervention for non-cognitive symptoms and behaviour that challenges can be considered in patients with dementia in the first instance only if there is server distress or an immediate risk of harming self or others.
    However there are circumstances within dementia when the use of antipsychotic can be of high risk or even fatal, such as Lewy bodies, Alzheimer’s disease, vascular dementia or mix dementias. NICE clinical guidelines 42 (2006, pg35) state antipsychotic should not be prescribed in mild to moderate non-cognitive symptoms. However, if symptoms of psychosis and or agitated behaviour causing significant distress then it may be possible to treat with antipsychotic medication. This would only be considered after discussions with the patient and or carers about the benefits and risks. Cerebrovascular risk factors need to be assessed along with the increased risk of stroke / TIA and possible adverse effects on cognition.
    Nevertheless behaviour that challenges concerning violence, aggression and extreme agitation that threatens the safety of that individual or others becomes a priority (NICE clinical guidelines 42, 2006, pg.37). In spite of this NICE clinical guideline 42 (2006, 1.7.3.3, pp.37-38) states healthcare professionals who use medication to manage this behaviour in dementia patients should be:
    • trained in the correct use of the drugs for behavioural control, specifically benzodiazepines (Diazepam, Lorazepam, Chlordiazepoxide, Temazepam, Zopiclone, etc) and antipsychotics (Haloperidol, etc),
    • be able to assess the risk associated with pharmacological control of violence, aggression and extreme agitation, especially in people who maybe dehydrated or physically ill,
    • understand the cardiorespiratory effects of the acute administration of such drugs and the need to titrate dosage to effect
    • recognise the importance of nursing those who have received these drugs in the recovery position and monitor pulse, blood pressure and respirations,
    • be familiar with and trained in the use of resuscitation equipment,
    • undertake annual training in resuscitation techniques,
    • understand the importance of maintaining an unobstructed airway.
    Violent behaviour should be managed without the use of high doses or combinations of drugs especially in dementia patients that are old and frail. Drugs for behavioural control should be used with caution because of the risks of loss of consciousness instead of sedation, over sedation with loss of alertness, specific issues related to age and physical and mental health. Those who have received involuntary sedation should were possible be given an explanation of the decision to use urgent sedation along with discussions with the family / carers and documented in the notes (NICE clinical guidelines 42 (2006, pp.38-39).
    In terms of route of medication NICE state if drugs are necessary in controlling violence, aggression and extreme agitation, then oral medication should be offered before parenteral medication. If this is necessary then IM (intramuscular) route should be preferred as this is safer. Vital signs should be monitored after parenteral treatment. Blood pressure, pulse, temperature and respiratory rate should be recorded at regular intervals agreed by the MDT (multidisciplinary team) until the person with dementia becomes active again. If the patient appears to be or is asleep, more intensive monitoring is required. If IM preparations are needed for behavioural control then lorazepam, haloperidol or olanzapine 0should be used. Wherever possible a single agent should be used rather than a combination. If using IM haloperidol (or any other IM conventional antipsychotic) for behaviour control. Healthcare professionals should monitor closely for dystonia (Dystonia is a medical term that describes a range of movement disorders that causes involuntary spasms and contractions. The movements are often repetitive and take on unusual and awkward postures. They can also be painful) and other extrapyramidal side effects include muscle rigidity, tremors, and restlessness (NICE clinical guidelines 42 (2006, pp.39-40).

    Areas of concern

    Inappropriate use of haloperidol has become a first line of action instead as a last resort leading to the over use of this medication within dementia patients. Other strategies such as non-pharmacological approaches are rarely used. Non-specialist are initiating patients with dementia on antipsychotic medications during their stay in hospital, (Banerjee, 2009, pg.35) resulting in haloperidol been prescribed as a PRN request with little or no recording as to the need or consulting with the older person mental health liaison team. Banerjee (2009, pg.30) further adds there are clear guidelines and the risk have been communicated and yet clinical behaviour appears not to have changed. The NSF (National Service Framework) for Older People (2001, pg.99) states there has been concerns at the number of antipsychotic drugs used in older people with dementia. Banerjee (2009, pg.33) further adds that the behavioural and psychological symptoms in dementia (BPSD) cannot be wished away they are part of the disease process just as in any other devastating illness.

    The Mental Capacity Act 2005

    Using restraint in the form of chemical restraint such as using haloperidol in patients with dementia to manage behaviour needs to be done so in the best interest of the patient and lawfully. The Mental Capacity Act (2005, ch.9 pg.4) state restraining a patient is only legal if:
    • The client lacked the capacity in relation to the matter in question
    • The nurse reasonably believes that it is necessary to do the act in order to prevent harm to the client
    • The act is a proportionate response to a) the likelihood of the client’s suffering harm and b) the seriousness of that harm.

    The Human Rights Act 1998

    The Human Rights Act 1998 sets out clear guidance on the freedom of the individual. For the purpose of this report Article 2 the right to life, Public authorities must not take away a person’s life, except in a few very specific and very limited circumstances, such as lawfully, and using no more force than is absolutely necessary, defending someone from violence; and take appropriate steps to protect a person’s life in nearly all circumstances (Department of Health 2007, pg.19). Article 3 the right not to be tortured or inhumanly or degradingly treated or punished. Inhuman treatment means treatment causing severe mental or physical suffering. Degrading treatment means treatment that is grossly humiliating and undignified (Department of Health 2007, pg.15). Article 5 the right to liberty, If restraint is to be used then it must be justified by a well defined rationale and reasons why other considerations are believed to outweigh individual freedom of action (Department of Health 2007, pg.17 & Royal College of Nursing 2008, pp.8-9).

    Ethical issues

    The Royal College of Nursing (2008, pg.5) state the basic ethical concepts underpinning nursing practice are, obligations and duties, avoid harm, assessing the consequences of action, autonomy and rights, best interests, values and beliefs. All of these are not easy when making decisions about restraint. It would be difficult to avoid harm in restraining or not restraining. Nurses have an obligation to all patients in their care and if allowing one person freedom of action it may cause another harm, decision making needs to strike a balance between the consequences of applying or not applying restraint.

    Nursing Midwifery Council (NMC)

    It would appear there is a lack of knowledge around the risks associated with dementia and haloperidol, not only from the nurses but some doctors to.
    • You must have the knowledge and skills for safe and effective practice when working without direct supervision.
    • You must recognise and work within the limits of your competence.
    • You must keep your knowledge and skills up to date throughout your working life.
    • You must take part in appropriate learning and practice activities that maintain and develop your competence and performance (NMC code of conduct 2008, pg.6).
    Although dementia is a mental health specialty, there is no justification for not being aware of the disease process. The NMC further add that all nurses regardless of their area or specialty require a fundamental knowledge of other areas of nursing.

    Behaviour

    Behaviours within dementia patients will have a special meaning, which may differ from the meaning concluded by the observer. What may appear a challenging act may be the only way the patient with dementia can communicate during times of stress and fear (Bonner 2005, pg.43). This is also supported by the common core principles for supporting people with dementia (2011, pg.11, principle 5) which state these behaviours often have an underlining cause and is a reaction to a feeling. They further add identifying unmet needs or causes of confusion that lead to challenging behaviour is paramount, along with being aware these behaviours can be managed without the intervention of antipsychotic medications and in doing so is a positive step in supporting people with dementia.

    Conclusion

    Dementia is a complicated and highly specialized area however understanding dementia and the behaviours associated with this disease is the first steps in preventing verbal and physical abuse. More often than not when people with dementia come into an acute hospital setting, health care staff experience difficulties when attempting to manage behavioural and psychological symptoms associated with dementia. The research suggests this partly due to a combination of lack of knowledge and training around the illness and the complexities dementia patience experience when in unfamiliar surroundings and faces. This often leads to misinterpretation of behavioural and psychological symptoms for symptoms of psychosis and thus prompting the use of antipsychotic medications (haloperidol) which is then used inappropriately and not in line with the NICE guidelines. It is well documented that reminiscence and stimulation remedies have a positive impact on patients with dementia quality of life. This aids healthcare professional to step into the world of the dementia patient and allowing them to become the teller rather than the told. However if there was a genuine concern that the patient with dementia became highly aggressive to the point of putting themselves or others in immediate danger then antipsychotic medication has its place. But if it was a case of agitation, aggression, wandering, shouting, repeated questioning and sleep disturbance, then the question has to be asked who is it a problem for, you or them?

    Best Practice / Way forward

    • Health Care professionals need to have an awareness of the different forms of dementia and how antipsychotic medications (haloperidol) affect dementia patients.
    • Knowledge and awareness of the risks associated with administering antipsychotic medications, such as haloperidol and the observations that are necessary to be performed after such medications have been given along with observing for any deteriorating signs these drugs can cause in a patient with dementia.
    • Not to write antipsychotic (haloperidol) as a PRN. If it is felt it is really necessary then a one off dose could be prescribed on the front of the drug kardex. A clear rationale as to why this action is necessary must be documented in the notes. In this situation a referral / advice should be sort from the older person’s mental health liaison team.
    • Antipsychotic medication should only be given as a last resort, in the event of risking significant harm to self or others and not as a first line action for behavioural and psychological symptoms in dementia.
    • Recognizing behavioural and psychological changes early can be halted through the use of reminisces and stimulation remedies. Finding out as much as possible about the individual with dementia is paramount. ‘This is Me’ leaflet allows healthcare staff to obtain a snap shot of the individual. In doing so helps develop an appropriate care plan and manage any challenging behaviour that may arise.
    • Developing a dementia care pathway that integrates antecedents, behaviour and consequence of any challenging behaviour will help identify triggers sooner. Also identifying a trigger system, a traffic light system, green, amber, red that identify behavioural hot spots and how each was managed to halt the progression of challenging behaviour progressing to the next level (green controlled mood, amber a warning mood is changing and red is the danger hot spot).
    • Carry out an audit of the use of antipsychotic medication in particular the use of haloperidol in patients with dementia to manage challenging behaviour and whether there is a clear documented rationale for this intervention. Along with any follow up review from this intervention (was haloperidol to be continued, was a referral to the older persons mental health team considered and how long this treatment was to be continued for.

  7. Lisa Smith says:

    The challenge for DH is about getting the message out there to people and their families about what help, support and treatment is out there and available. You can have the best commissioned services available but it’s of no use if the pathways are unclear.

    There needs to be a standard process for a referral into Social Care at the point of diagnosis- even if the care needs are a way off- the family needs to feel familiar with the way into assessment, before they need an assessment- it’s difficult to navigate your way around the health and social care system when you’re reeling and grieving for the person you’re losing in front of your eyes. This includes a carer’s assessment, time after time we have elderly people struggling in caring roles who don’t know they can get help and who aren’t being told it’s ok to ask for help. People also need to be aware that even if they have financial resources they are still entitled to an assessment of their needs…..

    My family have no contact with anyone apart from the nurse specialist at the memory clinic… they didn’t realise what they were entitled to ask for by way of help- or that they could ask for re-assessments etc. if things changed in between the 6 monthly memory clinic assessments.s

    Even a simple information pack that can be put on a shelf until it’s needed might help.

    • Piotr says:

      Just had a look at other comments above beucase those about teenagers becoming involved are inspiring and it’s amazing how well very young people can often get on with those with dementia. And also, their presence can enhance lives.Simon Florio’s details of a project and Suresh Kumar’s ideas impressed me. Music makes a huge difference often to dementia sufferers, it’s incredible how cheered and calmed many can be listening to music they like, either played live’ or through recordings.It was the comments about teenagers I was particularly reading and while looking back at those, found the response to me from Kathy Simmonds. Looking above I saw her statement that she went on a course held by David Sheard of Bradford University, who has done internationally renowned work of course with dementia mapping’ and has extensive experience of dementia. However reading what Kathy has written on that comment, that she attended a course as a Workforce Development Officer with Local Government. That would explain why her response to me contained what sounded like a load of jargon from a training course by someone who had no first hand knowledge of coping with dementia. Because presumably, that is exactly what she was doing. David Sheard of course, has extensive knowledge of dementia. But people attending 1 course and then thinking they are qualified to advise others who have experience of dementia, on the basis of not understanding the problems it creates but being able to quote from literature from the course they attended, are not helpful The problems with dementia need to be fully acknowledged within communities in order to make them more dementia friendly not glossed over’ as if there is some magic solution.

      • Wescley says:

        Dear Prof Field, I have been lsiientng clsleoy to the debates around the NHS reforms in England. As a doctor who has seen, from reasonably close quarters, about six NHS reorganisations in England in my 27 years in public health (including being vice-chairman of the Newcastle Health Authority), and 33 years as a qualified doctor, I think I have a reasonable judgement as to what is likely to work.We have seen a variety of reorganisations, particularly removing or recreating health authorities. Such reorganisations tend to create havoc and prevent continuity and coordination. The proposed reforms are, in my judgement, the most destructive and disruptive in the history of the NHS.I think the most important thing the NHS needs to do is integrate the primary and secondary care interface. This is not a new idea, and has been on the agenda as long as I can remember. It has never been achieved because of repeated reorganisations. The solution, in my view, is to strengthen the primary care trusts by stronger representation by primary care and secondary care. In other words, the primary care trust itself needs to be an integrated organisation. In recognition of this, we couldhave a new name-Health Care Trusts. In this way, the NHS in England will become more clsleoy aligned to that in Scotland with unified health boards.Our general practitioners are world-renowned, but not for their managerial activities. They should be focusing on what they are trained to do i.e. clinical care. Ironically, the only doctors who are formallytrained in health services organisation and management, public health doctors, are being marginalised in the current reforms. It is hard to believe these proposals are genuinely trying to improve the NHS as an integrated organisation. Indeed, as is becoming increasingly clear (though evident from the beginning to those of us long long in the tooth) the underlying objective is to create a pluralistic healthcare system driven by market principles. Unfortunately, however, the evidence from around the world and particularly the United States is that this does not work. While the United States is moving toward our system our government seems to be busy emulating the failed system in the United States. (We have seen this emulation of US policy in a number of sectors.)This is my only formal contribution to this debate so far. I have taken time out to write this note because I have been persuaded that your lsiientng exercise is genuine. Hitherto, I have assumed that the reforms would be railroaded through against all opposition and common-sense. With your help, this might be avoided.

  8. Dr Marie McDevitt says:

    Hello,
    I sent some comments in last week about dementia prevention and a useful book I had come across. Are those comments still under consideration by the moderator, as they have not been published yet?

    Thank you,

    MMcD

    • Raul says:

      We really must ensrue a better understanding of this condition, at grass roots’ level.Clearly there is a great deal of fantastic work being undertaken.Here in the East Midlands we have, within each of our neighbourhood centres, set up Coffee Bars’, where individuals, together with their Carers, can take a trip out to.These Centres are User friendly and safe.I feel it is vital, from a quality of life point, for there to be emphasis on providing such services, within local communities.Imagine, a person who has held complete autonomy, within their own lives, being contained within four walls, for the majority of their lives, post diagnosis !(This under the it’s for their safety’, excuse,not to mention deprivation of liberties).We must ensrue sufficient support, to enable such activities to continue, in order to enhance the lives of sufferers, that takes money and extra support staff.Sufferers and their Carers need to know how to access such services, to feel they are not isolated and alone and I agree, should be involved in planning a strategic direction.

  9. Jude Whitbread says:

    I agree with many that an important aim is to raise awareness and a consequent acceptance and familiarity with dementia in the community. As a carer of an Alzheimer’s sufferer (my mother) of 7 years one main struggle has been the attempt to maintain as full a life as possible for mum. Whilst she was still mobile I tried to take her to as many events, parks, restaurants and concerts as possible. She had mixed receptions, some places were very understanding but several were not. To keep her strength and mobility going, one pleasant place to go was country parks, but there had to plenty of benches for regular rests. Not all such parks have enough. At one brass band concert, mum was enjoying it too much and was patting her hands on her lap and a woman complained to me that it was “distracting”, and I couldn’t reason with mum to make her stop, so we had to leave at the interval. Sometimes in restaurants she used to get agitated and want to get up and walk round halfway through. I realise that could be very annoying for other diners but if people were familiar with the behaviour of dementia sufferers it might be more acceptable in more casual restaurants. I mean, it’s little different to taking a child to a restaurant and we’re asked to put up with noisy toddlers etc.

    Taking dementia sufferers for dental treatment is hard,not just in the logistics of taking them but my mother doesn’t understand when asked to open her mouth, and she certainly wouldn’t sit still for any painful procedures. Sedation is probably the only answer there. Also she’s been waiting over 6 months to be seen by the community dentist and have had to get a second reference from her former dentist after the first was lost in transmission. I could list many more examples but am sure it’s not necessary at this point.

    • Swashti says:

      Thanks for your reply Isobel.I totally agree that ingirong the massive impact that dementia can have on people does no-one any favours.However I would challenge your view very strongly that people with advanced dementia cannot experience quality of life. Forgive me if I misinterpret your comments, but that is my inference.How we value people, how we treat them, and where we look for the spark of humanity in people who are nearing the end of life with dementia will play a significant role in determining their experience. .as of course will their personality, history, relationships, other health problems and so on.With the right support, people CAN experience well-being, a sense of purpose, belonging, that they matter and are loved. This has to be our default position. People with dementia and their carers deserve nothing less.

  10. PAULINE HARDINGES says:

    Make sure that before leaving hospital or ones home due to the progress of dementia, one has a multidisciplnary team assessment done to establish the correct care package for that person.All too often people are given finacial assessments first that is a breach of the law as their care is based then on how much money they have.Also to make sure that end of life care is put in place before it hits a critical level. A person’s assessment must take place as though their needs are not being met, not when they are already in a nursing/residential home and their needs are being met, as then the person has to fight for continuing healthcare, which is not the way it should be.

  11. Mrs Bowdin says:

    Thank you for the invitation to comment. I would like to contribute mainly suggestions about potiential improvements in hospitals due to my experience as a carer and as a health care worker…
    It is apparent in hospitals that nurses are very busy dealing with basic care of all patients eg feeding, washing , dressing, toileting, medications, dressings, etc, etc. They struggle to spend much needed time with people with Dementia to help orientate them, reassure them if they are anxious, comfort them if they are missing loved ones, calm them if they are agitated, supervise them to prevent hazards leading to injury, or even give them the attention they crave as often they are bored and want to go home or elsewhere.This has a knock on effect on all ward staff who try to support the nursing staff leading to less time doing their own jobs and giving the best possible care. Everyone wants to ensure safety and best care for patients with Dementia in hospital but it is obvious better staffing is required.
    Staff training on Dementia should be mandatory to help with early diagnosis and managment.
    Dementia patients in hospital would benefit from activities to stimulate them mentally and physically eg cognitive stimulation therapy from occupational therapists, or exercise groups from physiotherapists. It could help some patients but would need extra funding for these also very stretched occupations.
    Other areas in hospitals, seem to have resources for patients to help provide a high quality of care and staffing to help prevent or manage emotional or behavioural problems eg paediatrics have toys, nursery nurses, environments children enjoy and space to play. In the same way why shouldn’t patients with Dementia have funded facilities they enjoy, such as TVs that are free to use and working (which is often not the case) in more homely dayrooms , structured activities as above as well as staff that have specialist training who are there all the time . Better provision of wheelchairs would be greatly welcomed so carers can take patients off a ward for a short period of time (porters chairs are often the only option and very difficult to get hold of and to push) as it can improve someone’s mood or relieve the boredom of being in hospital.

    Hospitals staff’s knowledge of problems patients may encounter when discharged from hospital or what resources may be useful to the patient could be improved by ensuring hospital staff either shadow community staff or work/ rotate to that area as part of their job. Additionally they could be responsible to educate their team members of what they have learnt. Alternatively hospital and community staff could educate each other about their roles. However this again would depend on improved staffing as it is a battle to do day to day work.
    It would make sense for hospital staff to be able to access patients community electronic notes to gain information faster to get in depth information about a patient’s history and any concerns or problems to aid immediate individual care and early discharge planning.
    Some recognised visible way of recognising a patient may be vunerable due to Dementia, such as the “Butterfly scheme” (whereby a symbol is used and staff are trained to recognise this etc) ,could be very useful to a lot of staff due to numerous shifts and staff covering different wards to help with communication and safety issues.
    Patients with Dementia seem to struggle to get adequate dental care and can have dentures that do not fit well and are uncomfortable which makes eating very difficult. also individual dentures would benefit being labelled as they get lost or mixed up on occasion.
    There is very limited access to audiology services (or difficult to find pathways) and knowledge of how to adjust hearing aids is patchy which leads to increased communication problems.
    I hope these ideas are of some help and lead to improved care for people with Dementia in hospitals and in the community. Thank you.

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