Improving Awareness:
1.      Are these the outcomes, recommendations and suggested means of achieving them the right ones?

Recommendation 1: Increased public and professional awareness of dementia.
This recommendation is important. However, there needs to be care when using the term ‘dementia’ if the aim is to improve early diagnosis. For example, a person may well have Alzheimer disease at an early stage where is has yet to impact on social or occupational functioning to an extent where a diagnosis of dementia can be made. Moreover this diagnostic threshold will differ from person to person depending on their normal social or occupational functioning and the social supports available to them. It would be preferable to focus public awareness on Alzheimer disease and other cognitive disorders rather than dementia per se. Equivalent public awareness campaigns have focused on the disease (e.g. cancer, heart disease etc) rather than the symptoms of more advanced disease. The emphasis on the disease would fit with the approach of non-governmental organisations. For example, the Alzheimer’s Society calls itself that rather than the ‘Dementia Society’. Moreover this disease focus will also help with communicating the positive messages envisaged for the public awareness campaign.

Recommendation 2: An informed and effective workforce for people with dementia.
This is a sensible recommendation and would go beyond obvious direct effects undergraduate health curricula for all health professionals and NVQs for care home sector workers to reach out into the wider employed and voluntary workforce.. It would be aided by focusing the strategy on Alzheimer disease and related cognitive disorders rather than dementia as suggested above. This is because, for example, training to help workers understand younger people with dementia, people from ethnic minorities with dementia or people with a learning disability with dementia would more clearly grasp that symptoms (i.e. the ‘dementia’) may differ. Take the example of people with learning disabilities, particularly Down syndrome, dementia often presents with behavioural rather than cognitive changes. This is easier to conceptualise in terms of thinking how a disease may affect someone differently depending on their pre-morbid state whereas dementia is, by definition, a set of symptoms so that understanding that dementia, itself, is different, is unnecessarily complex.

2.      Is there anything that has been missed to help us improve public and professional awareness of dementia?  

Employers are not the only groups whose employees have an interface with the public. Voluntary organizations (e.g. churches and other charities) also have similar responsibilities. In addition, if inter-generational engagement is a priority, schools and other educational establishments should be engaged with.

3.      What can you or your organisation do to help implement the recommendations?

The British Geriatrics Society is one of the longest established bodies in the UK championing the health of older people whom dementia mostly affects. Members have considerable experience of training in this area. As a recognized national body whose members care for people with dementia on a daily basis and provide leadership in this area, it is likely to have a key role in implementing, advocating and disseminating the strategy.

Chapter 2 – Early diagnosis and intervention

1.      Are these the outcomes, recommendations and suggested means of achieving them the right ones?

Recommendation 3: Good quality diagnosis and intervention for all.
The British Geriatrics Society (BGS) has long supported the importance of early diagnosis by a specialist. As the consultation notes, Old Age Psychiatrists necessarily have much of their workload focused on people with more advanced dementia. A specialist referral service would complement the current arrangements. Indeed many BGS members already run such a service, though without formal links to social care services. Improvement of these links would be very welcome.

Recommendation 4: Good quality information for those with dementia and their carers.
The BGS strongly supports this recommendation. Bodies like the Alzheimer’s Society are already well placed to help with this. In addition, Alzheimer Scotland provides an example of good practice by having a 24-hour helpline that can provide information and support for people with dementia and their carers.

Recommendation 5: Continuity of support and advice.
The BGS support this proposal. Dementia co-ordinators are already common in Scotland where they have proven very helpful and popular. They usually have responsibilities co-terminus with health and social service organization at a local level.  In addition community matrons appear to be taking on that difficult and common group of patients who have a mixture of both dementia and other long term conditions.

2.      Is there anything that has been missed to help enable early diagnosis and intervention?

Since a cognitive assessment is a standard set for all patients seen by geriatricians by the BGS, dementia is not uncommonly diagnosed when people present to geriatricians with other symptoms (e.g. falls, incontinence etc). It is estimated that in a typical district general hospital of 500 beds, 105 patients will have dementia. People with dementia commonly present with delirium in hospital and follow-up of these patients may also improve early diagnosis and intervention. Unless carers are concerned, people with dementia who frequently lack insight into their problems may bypass primary care and their cognitive problems are only identified during an emergency presentation to hospital services. The diagnosis of dementia depends on the presence of cognitive decline. Baseline cognitive measures are invaluable to subsequent diagnosis. In view of these points, the BGS would recommend that a basic cognitive assessment should be administered for every patient in contact with hospital services who is in the at-risk age for dementia; 70 years is probably a sensible cut-off. Alzheimer Scotland are currently supporting specialist dementia nurses to help with the assessment and care of people with dementia in acute hospitals. The nurses are also able to deliver dementia training to hospital staff (also pertinent for Recommendation 2).

3.      Do you agree that the diagnosis of dementia should be made by a specialist?

Yes. It is a very important diagnosis and deserves a specialist opinion.

4.      How open should referral systems to a memory service be?  Should people be able to refer themselves, or should they have to go to a GP first?

Whilst we would welcome any intervention that improves the recognition of cognitive impairment and early referral to specialist services, we would be uncomfortable with self-referral because the evidence suggests that this will miss many people with dementia who do not recognize their cognitive problems, but would generate many referrals from people with no objective cognitive problems, but may have mood disturbances etc. Referrals should be possible from other health and social care professionals (e.g. nurse practitioners, occupational therapists, speech and language therapists, pharmacists etc) with the approval of the GP. Furthermore, if self referral were to be accepted then memory clinics would need to be resourced to deal with the additional workload and skilled to recognise dementia mimics in an unselected / unscreened population.

5.      How would the dementia advisers be able to ensure continuity of care?

This works well in Scotland for dementia co-ordinators along the lines proposed in the consultation.

6.      What can you or your organisation do to help implement the recommendations?

The British Geriatrics Society ensures that all geriatricians are trained to make a diagnosis of dementia. Additionally, more extensive Specialty Interest Training is approved that includes specific specialist memory clinic training. There are far more consultant geriatricians than consultant old age psychiatrists and trainee numbers reflect this. Geriatric medicine is therefore in a better position to provide specialist memory services than Old Age Psychiatry if rapid implementation is required.

Chapter 3 – High-quality care and support

Are these the outcomes, recommendations and suggested means of achieving them the right ones?

Recommendation 6: Improved quality of care in general hospitals.
The BGS strongly supports this recommendation. A geriatrician would commonly be the most suitable person to become the senior clinician within a general hospital leading quality improvement in dementia assessment and care. The BGS also strongly supports the role of liaison psychiatry within general hospitals.

Recommendation 7: Improved home care for people with dementia.
The BGS supports this recommendation. In particular we are keen to see a move away from a task-focused approach for home care provision towards a more person-centred approach where the person with dementia is encouraged to use their own ADL skills in collaboration with carers. We would like to stress the importance of flexible support to homecare for dementia, which will often take longer. The staff need training in managing dementia. These issues may support the development of specialist homecare for moderately severe dementia. 

Recommendation 8: Improved short breaks for people with dementia and their family carers.
The BGS has long advocated the increased use of planned respite care. Imaginative approaches to this should be encouraged. For example, commissioning bed & breakfast accommodation out-of-season for short breaks has proved effective.

Recommendation 9: A joint commissioning strategy for dementia.
The BGS strongly supports joint commissioning. It works well in both Northern Ireland and Scotland.

Recommendation 10: Intermediate care for people with dementia.
The BGS strongly supports this recommendation. It is iniquitous that people with dementia are excluded from intermediate care services whilst all the evidence indicates that they can gain significant benefit from these as long as such services are tailored to their needs. There needs to be a robust educational programme engaging with current commissioners and providers of intermediate care to dispel any myths that people with dementia do not benefit from these services.

Recommendation 11: Improved dementia care in care homes.
Whilst examples of excellent dementia care in care homes already exists this needs to be extended across the sector.

Recommendation 12: Improved registration and inspection of care homes.
Since dementia care is a significant part of care home work this is a reasonable recommendation. However, it will need careful implementation. Over=demanding standards may force care homes to seek exemption and choose not to admit people with dementia or even consider whether their business is viable in an atmosphere of perceived over-regulation. This may be particularly germane to smaller care homes that are not part of a larger care-provider organisation.

3.      What more could be done in acute care, home care and care homes?

If dementia care is to be improved in hospitals it has to be given high priority. Otherwise, if there is a conflict between improving dementia care and some other health target (e.g. waiting times), quality improvement of dementia care is likely to be sidelined.

There are successful pilot schemes of community psychiatric nurse liaison with care homes that have improved dementia care as part of a wider mental health brief.

4.      What could be done to make the personalisation of care agenda (including individual budgets) work for people with dementia and their family carers?

Individualisation of care budgets has proven difficult to implement effectively in Scotland because of the complexity of the process. Moreover, in some areas there is a limited choice of care providers and block purchase by local authorities may be more economical. Those people with dementia who have no family carers to help them are likely to be disadvantaged.

5.      What can you or your organisation do to help implement the recommendations?

The BGS ensures that all geriatricians are trained to provide hospital consultation for people with dementia. Additionally, more extensive Specialty Interest Training is approved that includes specific specialist acute hospital training in the assessment and management of people with cognitive impairment (delirium, dementia) in acute hospital settings. Respite care training is also a core element of higher training in Geriatric medicine. Some people with dementia have significant physical limitations and short breaks may need to be organized through local geriatric medicine services.

Chapter 4 – Delivering the National Dementia Strategy

1.      Are these the outcomes, recommendations and suggested means of achieving them the right ones?

Recommendation 13: Clear information on the delivery of the National Dementia Strategy.
The BGS supports this recommendation. It is extremely important to know what the state of existing services are in each area so that proposal may be properly implemented ie there is a huge variability in the level of services across the nation.

Recommendation 14: A clear picture of research evidence and needs.
The BGS strongly supports this recommendation. Such exercises have been performed in recent years (e.g. SIGN 86) and are ongoing in Northern Ireland and Scotland for their national dementia research effort, but a comprehensive review would be critical for implementing the National Dementia Strategy and helping commissioners of research identify specific research needs. The BGS would also wish to see a commitment to the research needs identified. It is clear from the evidence that spending on research into dementia is completely disproportionate to the extent and costs of dementia. This should be a priority for Government.

Recommendation 15: Effective support for implementation.
The BGS supports this recommendation and would wish to see that clear evidence of support is provided at national and local level.

2.      Is there anything that has been missed that would help to ensure high quality care and support for people with dementia and their families?

The experiences in the Netherlands and in Scotland should be specifically considered and reflected on. For example, are Dutch initiatives such as day services on ‘care farms’, ‘care ships’ etc appropriate for England? Should the National Strategy adopt a ‘bottom-up’ approach as the Dementia Integrated Care Pathway is doing in Scotland?

3.       What more could be done in acute care, home care and care homes?

It would be sensible to ensure there is capacity to deal with any increased public demand for services. Therefore, prior to a national public awareness campaign, arrangements for specialist memory services should be in place. Recommendations 3, 4 and 5 are therefore a priority. However these will take a little time to implement. Recommendation 6 is also an important priority and would be relatively quick and easy to implement. Recommendations 7 and 8 would be easier to implement once Recommendation 9 is implemented. Recommendation 10 should be implemented at the earliest opportunity. Recommendation 13 is also easy to implement quickly. Hence timing should be:

First – Recommendation 10 and 13.
Second – Recommendation 6
Third Recommendation 9
Fourth- Recommendations 3,4 and 5
Fifth – all other Recommendations.

4.       What could be done to make the personalisation of care agenda (including individual budgets) work for people with dementia and their family carers?

Recommendations 10 and 13 should be implemented as soon as the National Dementia Strategy has finished considering the consultation process. Recommendation 6 should be signaled at the same time and delivered within 6 months. Recommendations 3,4 and 5 will take at least one year to commission.

What can you or your organisation do to help implement the recommendations?

Geriatricians are in key positions to aid the implementation of the strategy. In particular those that could be implemented early (Recommendations (3,4,5,6,10 and 13).

6. Does this draft strategy fully address issues of equality and diversity, and the needs of particular groups?

The draft strategy needs to consider carefully whether people with learning disabilities who develop dementia should be seen at the envisaged specialist memory services. This group often has considerable physical co-morbidities and different models of care and assessment may be appropriate.

General comments

Do you have any other comments you would like to make in relation to this consultation?

The aims and objectives of this proposed National Dementia Strategy are laudable, although the omission of end of life care and planning is a major weakness.