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United Kingdom (Scotland)

2012: National Dementia Strategies (diagnosis, treatment and research)

Background information about the National Dementia Strategy

Status and historical development of the National Dementia Strategy

The Scottish government made a commitment in May 2009 to prepare and publish a National Dementia Strategy for Scotland. Initial work was influenced by and focused on five “workstreams” described as:

  • Treatment and improving the response to behaviours that carers and staff find challenging;
  • Assessment, diagnosis and the patient pathway – improving the journey of people with dementia and their carers;
  • Improving general service response to dementia;
  • Rights, dignity and personalisation;
  • Health improvement, public attitudes and stigma.

Each workstream resulted in a report which included detailed recommendations and contributed towards the development of the Strategy. These reports can be consulted at:

http://www.scotland.gov.uk/Topics/Health/health/mental-health/servicespolicy/Dementia     

This work was followed by a process of consultation and dialogue. First, the Dementia Dialogue took place in autumn 2009. Next, a series of engagement events were run by Alzheimer Scotland, in partnership with the Scottish Government, between March and May 2010. This provided a possibility to test the emerging recommendations from the various workstreams. These can also be consulted on the above-mentioned website.

The Strategy was then prepared by the Scottish Government in collaboration with the Dementia Strategy Management Group which consisted of the Chairs of the various workstreams and other key stakeholders in the field of dementia, including Alzheimer Scotland.

The published strategy identified the following five key challenges:

  1. Fear of dementia means people delay in getting a diagnosis.
  2. Poor post-diagnosis support.
  3. General healthcare services do not always respond well to those with dementia.
  4. People with dementia and their carers are not always treated with dignity and respect.
  5. Families and carers do not always get the help they need to protect their own wellbeing and care well.

The strategy also identified two priority areas for improvement.

  •  Providing excellent post-diagnostic support and information, and
  • Improving response to dementia in general hospital settings, including alternatives to admission and better discharge planning.

Duration of the National Dementia Strategy

The National Dementia Strategy runs from 2010 to 2013. The strategy is currently under review.

Provisions or procedure for implementing the Strategy

Work to deliver the Dementia Strategy is overseen by the Dementia Strategy Implementation and Monitoring Group. Its remit is to:

  1. Ensure delivery of the eight Actions to support the change programme, including being responsible for considering next steps in relation to particular actions, such as the work on knowledge and skills.
  2. Monitor the impact of public sector funding pressures on the capacity of partners to deliver on those commitments within the dementia strategy that have a potential resource implication.
  3. Establish a monitoring framework which is valid both nationally and locally to track change and improvement over time in respect of dementia services. The framework will build on the benchmarking work set out above and where possible will be based on existing data sources or data which is provided through the benchmarking work. It takes into account issues such as:
  • The number of people with a diagnosis;
  • The number of people receiving post-diagnostic information and support;
  • Reductions in unnecessary admissions to general hospitals and reduced period

      of admission for those for whom it is appropriate;

  •        Reductions in the use of psychoactive medication;
    • Compliance with relevant legal provisions relating to Adults with Incapacity
    • Increases in social and community activities, including physical activity;
    • Improvements in the experience of people with dementia and their carers;
    • Prepare Annual Reports on the progress of the Strategy;
    • Commission a revision of the Dementia Strategy, which takes account of

       progress and learning, to be in place from June 2013.

Procedure for monitoring progress made in achieving the goals set

Work and progress on the National Dementia Strategy is monitored by the Dementia Strategy Implementation and Monitoring Group which is comprised of key partners in the strategy, including people with dementia and their carers and Alzheimer Scotland. Annual reports were published for 2011 and 2012.  These are available at:

http://www.scotland.gov.uk/Topics/Health/Services/Mental-Health/Dementia  

A revision of the National Dementia Strategy has been commissioned which will take into account progress and learning. An updated strategy is planned for publication during 2013. Alzheimer Scotland is currently working in partnership with the Scottish Government to hold a series of six dialogue events across Scotland between October 2012 and January 2013. The Scottish Government has also arranged a national dialogue event on 12 December 2012. These dialogue events provide an opportunity for key stakeholders, including people with dementia, their partners, families and carers as well as health, social care and other professionals, to discuss the progress of the current strategy and help identify the key priorities which will inform the direction of the next strategy.

Involvement of the Alzheimer association (and/or people with dementia)

Alzheimer Scotland published an election manifesto in 2009 calling for a national dementia strategy for Scotland.  The manifesto was informed by the views of people with dementia gathered during a series of consultation road shows across Scotland. The manifesto sought the commitment of all parties to make dementia a national priority.  The current Scottish Government made dementia a national priority shortly after the election.

Alzheimer Scotland have been fully engaged, as an equal partner, in the development, implementation and monitoring of Scotland’s National Dementia Strategy, as are people with dementia and carers. As well as the evidence gathered by Alzheimer Scotland from its members and those who use services, people with dementia are also represented by the  Scottish Dementia Working Group (the “SDWG” is a campaigning and awareness-raising group, formed in 2002, whose members all have dementia) who have been involved in the development of the Strategy. The SDWG aims to ensure that the needs of all groups of people with dementia are met (e.g. including minority groups such as British Sign Language users, people from diverse ethnic groups and younger people with dementia).

The Scottish Government values the individual experiences of people with dementia and those who care for them.  Alzheimer Scotland therefore systematically gathers such information which is used to inform the monitoring and implementation of the strategy.

Alzheimer association’s overall assessment of the National Dementia Strategy

As highlighted by the one- and two-year reports significant progress has been made in delivering the key aims of the National Dementia Strategy.

These include

  • A guarantee of a minimum of one year’s post diagnostic support, from a named link worker, for every person diagnosed with dementia.  The guarantee is based on the five-pillar model developed by Alzheimer Scotland.
  • New common standards of care for dementia were published in June 2011. The standards are underpinned by the Charter of Rights for People with Dementia and their Carers and underline a common understanding of what constitutes a good quality of care and support – through all stages of the illness and in all care settings.  The standards are available at:

 http://www.scotland.gov.uk/Publications/2011/05/31085414/0

  • Alzheimer Scotland also published a guide to the dementia standards for people with dementia and their families and carers to inform them of the standards of care, support and treatment they should expect at any stage of the illness and in every setting.  The guide is available at: http://dementiascotland.org/dementia-strategy/2011/standards-of-care-for-dementia-in-scotland-a-guide-for-people-with-dementia-and-their-carers/.
  • A National Dementia Standards in Hospitals Implementation and Monitoring group has been established, chaired by the Chief Nursing Officer, to coordinate activity in this area of care.  A key part of this group’s current work is to scrutinise all the evidence in relation to dementia care in hospitals, including the findings of the inspections, to provide information at a national level on progress with the implementation of the dementia standards in hospitals, identify areas where improvement is needed and highlight any best practice.
  • The roll out of inspection programme into the care of older people in acute general hospitals by Healthcare Improvement Scotland.  All acute hospitals in Scotland’s 14 territorial National Health Service Boards are subject to inspection against a number of priority areas, which includes a key set of the Dementia Standards aimed at hospital care to inform this process. 
  • Promoting Excellence: A knowledge and skills framework was launched in June 2011 and The National Health Service Education for Scotland (NES) and the Scottish Social Services Council (SSSC) have taken forward a range of activities to implement a two-year strategic dementia workforce development plan to support delivery of the change programme and actions outlined in Scotland’s National Dementia Strategy. Promoting Excellence is available at:

http://www.scotland.gov.uk/Publications/2011/05/31085332/0.

This ongoing programme has delivered the production and dissemination of:

    • Informed about Dementia: improving practice DVD, a resource targeted at the entire health and social services workforce to support them to achieve the baseline knowledge and skills set out in Promoting Excellence.
    • Dementia Skilled-Improving Practice, a comprehensive learning resource with accompanying guidance for managers and educators.
  • In March 2012 the first cohort of 100 acute general hospital dementia champions graduated from their programme and continue to be supported in their role as change agents via learning networks.  A further 200 champions will be trained between 2012 and 2013 including social services staff.  The Champions have been trained to better understand, recognise and respond to the particular needs of people with dementia in acute hospital and associated care settings and will lead front line improvements in dementia care; sustain change in their area; and cascade information and education about dementia to other staff. 
  • The Scottish Government has agreed to match Alzheimer Scotland funding for an Alzheimer Scotland Specialist Nurse (ASDN) in each of Scotland 14 NHS Health Boards. There are very good early signs that the ASDNs in post are already making a positive impact in ensuring that their respective NHS Boards are responding to the implementation of the Dementia Standards and Promoting Excellence.  The establishment in each NHS Scotland Board of an ASDN is closely aligned to the Dementia Champions initiative, each working with the other to ensure an infrastructure to drive forward improvement in the sector. 
  • The Scottish Government have continued to support an Allied Health Professional (AHP) programme of work for the implementation of the Strategy through our 3 AHP consultants who all have a national remit.  More recently the Scottish Government has extended this support with the appointment of the very first AHP consultant to be based in Alzheimer Scotland. All the AHP programme work is embedded in the wider dementia strategy implementation work including the Dementia Champion programme. The three AHP Dementia Consultants each have a national remit as well as being hosted within a health board.  These national remits include:
    • Acute care and the role of the Allied Health Professional – NHS Greater Glasgow and Clyde;
    • Early Intervention and the role of supported self management. – NHS Lothian;
    • Activity Participation and the Environment –  NHS Lanarkshire.
  • The Dementia Demonstrator sites are three health and social care partnerships which are working with the support of a range of national programmes to demonstrate that whole system redesign can deliver better care for more people with the same or less resource. The national programmes have all committed to work together to support the three sites and, in doing so, look for opportunities to better integrate their work nationally on an ongoing basis. The three partnerships are Midlothian CHP, North Lanarkshire CHP and Perth & Kinross CHP and the work includes an economic analysis of the impact of the changes made.

Diagnosis, treatment and research

Issues relating to diagnosis

Timely diagnosis in the National Dementia Strategy

Timely diagnosis is mentioned in the executive overview of the Strategy where it is stated that the Scottish Government and its partners are committed to delivering world-class dementia services by continuing to increase the number of people with dementia who have a diagnosis to enable them to have better access to information and support and by improving staff skills and knowledge in both health and social care settings.

Earlier this year, The Alzheimer Society recently publishedMapping the Dementia Gap: Progress on improving diagnosis of dementia 2010-2011,detailing relative performance across the United Kingdom.  This report shows that rates of diagnosis are improving in Scotland.

Amongst the five key challenges, fear of dementia is mentioned as a reason for people not seeking diagnosis. Stigma is mentioned and the reluctance of some general practitioners (GPs) to diagnose. Solutions are described in the form of informing people of the benefits of diagnosis and improving the quality and availability of post-diagnostic support.

The Scottish Government has made a commitment to guarantee a minimum of one year post diagnostic support for every person diagnosed with dementia provided by a named link worker.  The guarantee is based on the five pillars model of Post Diagnostic Support developed by Alzheimer Scotland.  The five pillars are:

  • help to understand the illness and manage symptoms;
  • support to stay connected to the community;
  • peer support;
  • help with future decision-making;
  • developing a personalised care plan for their future care. 

The Scottish Government has therefore said that it will introduce a HEAT[1] target beginning in 2013 with activity starting in 2012 which will have three components: that all people newly diagnosed would receive a guarantee on post-diagnostic support; that this would constitute a year’s worth of post-diagnostic support, including as a key output the building of an all-encompassing person-centred support plan based on the five pillars; and this support would be provided by a named person/link worker.

Four test sites have been set up in Scotland to identify what is required at the local level to deliver the commitment, in terms of service and workforce reconfiguration, and what costs might be identified to deliver it.

Which healthcare professionals are responsible for diagnosing dementia

GP may assess or refer to specialist consultant or memory clinic.

Individual GP practices will operate different consultation times. It may be possible to extend consultation times but again, this would depend on the individual practice.

Type and degree of training of GPs in dementia

It is not known how much or what kind of training GPs receive in dementia in their professional training to become a GP. This is an area that is receiving increased attention as a result of diagnosis targets. This is likely to have the impact of increasing GP awareness.  In reality GPs will see very few new cases of dementia, so may not have the skills and knowledge to respond appropriately.

Required tests to diagnose dementia

Guidelines are provided by the Scottish Intercollegiate Guidelines Network (86) 2006 on diagnostic tools to use in diagnosis of AD, vascular dementia, Lewy body and fronto-temporal dementia.  This guideline is not intended to be construed or to serve as a standard of care but it is advised that significant departures from the national guideline or any local guidelines derived from it should be fully documented.

Issues relating to medical treatment

Medical treatment in the National Dementia Strategy

Sections 64 to 67 of the National Dementia Strategy address the issue of the hospital treatment of people with dementia. Section 64 emphasised that a person with dementia should only be admitted to hospital when the appropriate treatment cannot be provided at home. The reason given is that unfamiliar surroundings and people and the experience of being in hospital may cause stress and anxiety, for anyone but especially for people with dementia whose ability to reason and remember is likely to be impaired. In section 65, the need to make the environment and practices dementia friendly is emphasised, whereas section 66 describes the need to ensure that the cognitive impairment of people with dementia is accurately assessed, especially when they are admitted to emergency services. When admitted to a general hospital, it is stated that information about the person’s diagnosis and needs should be communicated to staff and built into the care planning process. Finally, section 66 emphasises the need for hospital staff to carry out an assessment if a person with no known diagnosis of dementia is suspected of having dementia.

The availability of medicines in general

Scotland operates a system of free prescriptions.

The availability of Alzheimer treatments

All four AD drugs are available in Scotland,

Conditions surrounding the prescription and reimbursement of AD drugs

AD drugs will normally be prescribed by a specialist doctor (for example, a psychiatrist) but sometimes by a GP with substantial experience in the diagnosis and treatment of dementia. If a person needs to see a specialist, the GP will arrange this. Normally, the cheapest drug will be selected but the doctor may choose a more expensive drug if there are good clinical reasons for doing so. There are no restrictions on the prescription and reimbursement of AD drugs for people with dementia living alone or in nursing homes.

Prescription

Donepezil

Rivastigmine

Galantamine

Memantine

 

Free

Free (and for dementia related to Parkinson’s)

Free

Free

Initial treatment decision

Usually a specialist but may be a GP

Usually a specialist but may be a GP

Usually a specialist but may be a GP

Usually a specialist but may be a GP

Continuing treatment decision

No restrictions

No restrictions

No restrictions

No restrictions

Required examinations

Scottish Intercollegiate Guidelines Network (86) 2006

Scottish Intercollegiate Guidelines Network (86) 2006

Scottish Intercollegiate Guidelines Network (86) 2006

Scottish Intercollegiate Guidelines Network (86) 2006

Issues relating to research in the National Dementia Strategy

The National Dementia Strategy contains a section on “continued action to support dementia research” in which the involvement of people with dementia and carers is encouraged. In August 2008, the Scottish Government established the Dementia clinical Research Network for Scotland. Together with Alzheimer Scotland, this network will facilitate the involvement of people with dementia and their carers in research as well as the possibility for people with dementia to participate in early studies of potential treatment. Contact details are provided in the Strategy which people can use to indicate their interest in taking part in research on dementia.

The last year has seen dementia research in Scotland grow significantly. Support from the Chief Scientist Office for the Scottish Dementia Clinical Research Network (SDCRN) has been renewed for a further three years. In September 2011 Alzheimer Scotland launched a new Dementia Research Centre in partnership with the  University of Edinburgh.  The centre is funded by Alzheimer Scotland in partnership with the University of Edinburgh representing a major investment in dementia research in Scotland. The Centre is setting up a brain tissue bank which will be an important dementia research resource for many years to come.

References

Alzheimer Scotland Quarterly Newsletters: www.alzscot.org

Scottish Government (2010),Scotland’s National Dementia Strategy,Edinburgh

Scottish Government (2011),Promoting Excellence: skills and knowledge framework for dementia care,Edinburgh

Scottish Government (2011),Standards of Care for Dementia,Edinburgh

Scottish Government (2011),Dementia Strategy one year report,Edinburgh

Scottish Government (2012),Dementia Strategy two year report,Edinburgh

SIGN (2006),Guideline 86: managing patients with dementia,Edinburgh

Acknowledgements

Jim Pearson, Deputy Director of Policy, Alzheimer Scotland

Maureen Thom, Information Manager

[1] A HEAT target is a Ministerial measure set by the Government in relation to Health Improvement, Efficiency, Access to services and Treatment.

 

 
 

Last Updated: Tuesday 14 May 2013

 

 
  • Acknowledgements

    The above information was published in the 2012 Dementia in Europe Yearbook as part of Alzheimer Europe's 2012 Work Plan which received funding from the European Union in the framework of the Health Programme. Alzheimer Europe gratefully acknowledges the support it has received from the Alzheimer Europe Foundation for the preparation and publication of its 2012 Yearbook.
  • European Union
 
 

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