Improving domiciliary care for people with dementia



Document details

|Title |Improving domiciliary care for people with dementia |

|Description |This report has been commissioned by the South West Dementia Partnership. It reviews |

| |the current position of domiciliary care in the South West of England in delivering |

| |quality support for people with dementia and their carers, considers the challenges |

| |faced and makes recommendations for commissioners and service providers regarding how|

| |to move forward with improving provision. |

|Version |Final |

|Date |07 April 2011 |

|Author |Catherine Pascoe, Associate Development Consultant |

| |Department of Health South West. |

|Publisher |South West Dementia Partnership |

|URL |.uk/domiciliary-care |

Contents

1. Introduction 5

1.1 Reference Group membership 8

2. What should we be aiming for? 9

2.1 Desired outcomes for people with dementia. 9

3. What do we know about current domiciliary provision? 11

3.1 Person-centred delivery 11

3.2 Time 12

3.3 Continuity and reliability 13

3.4 Contracting and procurement 14

3.5 Specialist domiciliary care services for people with dementia 15

3.5.1 Effectiveness 15

3.5.2 Cost 16

3.5.3 Funding arrangements 16

3.5.4 Need, access and capacity 16

3.5.5 Support from other services 17

4. Bridging the gap; how can we improve domiciliary care for people with dementia and their carers? 18

4.1 Be clear about what good dementia domiciliary care looks like 19

4.1.1 Start with the person 21

4.1.2 Take an assets, rather than deficits, approach 22

4.1.3 Ensure robust support management 23

4.1.4 Support and understand family members/carers 23

4.1.5 Provide consistency and continuity 24

4.1.6 Provide flexibility 24

4.1.7 Ensure access to reablement 25

4.2 Develop outcome based approaches appropriate for people with dementia 25

4.3 Develop the Workforce 27

4.4 Ensure clear linkages with other services 28

4.5 Provide additional, appropriate support in a crisis 29

4.6 Take account of Quality, Innovation, Productivity and Prevention 30

4.7 Improve contracting and procurement 32

4.8 Take account of the provider perspective 34

4.9 Consider potential roles for specialist dementia domiciliary care within the community support system 35

4.9.1 Assessment, advice, support planning, additional capacity 35

4.9.2 Support for those with very complex needs 36

4.10 Support transparency and local accountability 36

5. Next steps 37

Appendices

1. Self assessment tools for domiciliary care providers and commissioners

2. Innovative practice examples

3. What does a personalised approach mean for a person living with dementia?

4. Case studies and scenarios

Introduction

This report has been commissioned by the South West Dementia Partnership. Members of the South West Dementia Partnership are working collaboratively to support the implementation of the National Dementia Strategy (Department of Health, 2009)[1]in the South West of England.

Two thirds of people with dementia live at home and one third of this group live alone. Currently, aside from the support provided by family and friends, domiciliary care, or home care, is probably the most important service involved in supporting people with dementia at home. Domiciliary care services have a key role in enabling people with a dementia to live well and remain at home for as long as possible, and in providing vital support for carers.

Social care in England is undergoing an immense cultural change in the way support is provided. The Putting People First transformation agenda outlines a new personalised system, available to all, focussed on prevention, early intervention, enablement, and high quality personally tailored services (HM Government, 2007) [2]. People will have maximum choice, control and power over the support services they receive. The National Dementia Strategy (Department of Health, 2009)[3] sees the implementation of Putting People First as the major vehicle for delivering improved personal community support services for people with dementia.

People will be able to direct their own support including having access to direct payments and personal budgets.[4] Inevitably there will be some older people with dementia who do not wish to go down that route and it will be essential to ensure that they too are able to receive personalised support that offers them choice and control.

We are currently at a time of transition between the old and the new systems. In terms of older people’s services, domiciliary care provision sits right on the cusp of that transition as one of the standard service responses but with the potential to deliver highly personalised care and support. Both commissioners and providers of services face significant challenges in transforming care provision and in also addressing the particular needs of people with dementia and their carers in the context of the broader changes to be delivered.

This report reviews the current position of domiciliary care in delivering quality support for people with dementia and their carers, considers the challenges faced and makes recommendations regarding how to move forward with improving provision. It is designed to be a resource for those involved in commissioning and providing domiciliary care, including contracting and finance staff and those working on the personalisation agenda.

The report draws on research undertaken during 2010-2011 in the South West of England (South West Dementia Partnership, 2010)[5] and the recently published reports from the Alzheimer’s Society (2011)[6] and the Personal Social Service Research Unit of the University of Manchester (Challis, D. et al, 2011)[7].

It has also been informed by Reference Group discussions and comments, members of the group are listed overleaf, and by discussions conducted by the South West Dementia Partnership Involving People with Dementia Project Manager, who visited groups of people with dementia and their carers to talk about the issues outlined in the report and sought feedback and views for improving delivery of support. Quotes gathered as part of this exercise have been included in the text and case studies from people with lived experience of dementia are included as planning tools in the report appendices.

The report findings are not new; the draft report produced as part of the consultation on the National Dementia Strategy, Commissioning domiciliary care for people with dementia and their carers[8] (2008), covers much the same ground. However, as work on transforming adult and community services progresses and the same issues continue to be raised it is clear that key messages need further reinforcement and more needs to be learnt and shared about how to move developments forward.

1 Reference Group membership

|Melanie Buckley |Operations Manager, Carewatch Care Services |

|Jeff Russell |Chief Executive Officer, Pramacare |

|Sarah Mings |Support Services Manager, Alzheimer’s Society |

|Louise Markham, |Operation Manager, Stepping Stones to Independence |

|Nicky Dalton |Community Services Director, Brunelcare |

|Alistair Milton |Managing Director, Poppy’s Homecare |

|Sue Squibb |Branch Manager, Nestor PLC |

|Alison Waller |Strategic Commissioning Manager, Dorset County Council |

|Liz Sutton |Strategic Commissioning manager, Bristol City Council |

|Basil Wild |Commissioning and contracts officer, Bath and NE Somerset Council |

|Kate Bolger |Contracts and commissioning officer, North Somerset Council |

|Anne Rollings |Involving People with Dementia Project Manager, Alzheimer’s Society and South West Dementia Partnership |

|Robin Wilmot |Dementia Evaluation Nurse, 2gether Foundation NHS Trust, Gloucestershire |

|Lynne Dean |Deputy Regional Director, Department of Health South West |

|David Francis |Policy Implementation Project Manager, Department of Health South West |

|Catherine Pascoe |Associate Development Consultant, Department of Health South West |

|With support from Claire |National Dementia Strategy, Programme Manager (Implementation) Older People and Dementia, Social Care |

|Goodchild |Local Government Care Partnerships |

What should we be aiming for?

1 Desired outcomes for people with dementia.

The Alzheimer’s Society report, ‘Support. Stay. Save.’ (2011)[9] identifies maintaining independence, along with remaining active and engaged as key outcomes for people with dementia. It highlighted that 83% of people who responded to their survey said being able to live in their own home was very important to the person with dementia.

The Department of Health report ‘Quality outcomes for people with dementia’ (2010)[10], outlines nine key outcomes:

• I understand, so I make good decisions and provide for future decision making.

• I get the treatment and support which are best for my dementia, and my life.

• Those around me and looking after me are well supported.

• I am treated with dignity and respect.

• I know what I can do to help myself and who else can help me.

• I can enjoy life.

• I feel part of the community and I’m inspired to give something back.

• I am confident my end of life wishes will be respected. I can expect a good death.

In the National Dementia Declaration[11] (Dementia Action Alliance, 2010) people with dementia and family carers helped to identify seven key outcomes:

• I have personal choice and control or influence over decisions about me.

• I know that services are designed around me and my needs.

• I have support that helps me live my life.

• I have the knowledge and know-how to get what I need.

• I live in an enabling and supportive environment where I feel valued and understood.

• I have a sense of belonging and of being a valued part of family, community and civic life.

• I know there is research going on which delivers a better life for me now and hope for the future.

•

What do we know about current domiciliary provision?

1 Person-centred delivery

The March 2009 national user experience survey of people over 65 receiving home care services (NHS Information Centre, 2009)[12] states that:

• 58.4% of people over 65 nationally say they are ‘extremely’ or ‘very satisfied’ with the home care support they receive. This is not a figure that would be acceptable in most service industries. The figure is higher in most of the South West authority areas with the highest percentage being 73.4%. Whilst the South West performance looks relatively good there are still a high number of service users who are not ‘very’ or ‘extremely satisfied’ with the service they receive;

• 67.1% are always happy with the way care workers treat them;

• 91% say care workers always or nearly always do the things they want, which is encouraging;

• 84.2% say care workers always or usually come at times that suit them;

• 84.5% say they feel in control, or with help, feel in control.

The Alzheimer’s Society report, ‘Support. Stay. Save.’ (2011)[13] states that 66% of care workers say more choice over the care they provide to the person with dementia when they visit would be quite or very helpful in supporting them.

Research in the South West[14] found that:

• purchasing is still currently largely task- and time-focussed. Care agencies are likely to receive requests for practical tasks to be delivered in set amounts of time;

• the majority of local authority purchased provision is for personal care tasks with little evidence of focus on engagement and well-being;

• assessment and support planning approaches now largely ensure that individual outcomes are identified. Achievement of these will also be discussed as part of the individual review process;

• issues seem to arise between the identification of individual outcomes and how these are then translated into the practical support provided by domiciliary care agencies and then how progress towards the outcome is measured and reviewed.

2 Time

The Home Care Users Survey (NHS Information Centre, 2009) found that 21% of people said their carers were always or often in a rush. [15]

Laing and Buisson (2010, p.46) [16] identify that over half of all home care visit are for 30 minutes, 19% are for 15 minutes.

The new Alzheimer’s Society report(2011)[17] tells us that:

• 80% of care workers say that having more time to spend with a person with dementia on each visit would be either very helpful or quite a lot of help in supporting that person at home;

• 50% of carers and people with dementia said that the person with dementia was not getting sufficient support and care to meet their needs and that this was perceived to result in serious repercussions including avoidable admission to hospital and early entry to long term care;

• 1 in 10 carers said poor care resulted in the person with dementia having an avoidable admission into hospital;

• 1 in 10 carers said poor care resulted in the person with dementia going into residential care earlier than expected;

• 52% reported that carers did not receive sufficient support to enable them to carry out their caring role.

If we accept that social interaction and people being enabled to do things for themselves are key factors in delivering positive outcomes for people with dementia, we need to recognise that this requires a more flexible approach to service delivery than has traditionally been the case and may take more time than the average thirty minute domiciliary care timeslot that is often purchased from generic services.

Putting People First (HM Government, 2007)[18] promotes an approach that focuses on how we are going to meet people’s aspirations, requiring us to identify the outcomes we are aiming to achieve and moving away from the old time and task-focussed care delivery system. This is a very positive step for people with dementia. Investment in slightly more time earlier in a person's journey with dementia that enables promotion of independence and achievement of outcomes associated with engagement and well-being is likely to enable people to remain at home for longer and reduce crises. 

3 Continuity and reliability

In order to develop a supportive relationship and get to know someone well it is essential that there is continuity with and from those providing support. Being visited by the same care worker on a regular basis is critically important for people with dementia and their carers.

From a carers perspective, particularly those who do not live with the person for whom they care, the reassurance they feel when they know that someone will definitely turn up to provide the support needed is invaluable.

The Home Care Users’ Survey (NHS information Centre, 2009)[19] states that:

• 91.9% of people always or nearly always see the same care worker, in the South West this figure ranges between 84.2% and 93.6%;

• 78.8% of carers usually or always arrive on time, in the South West the range is, 20.8%-90.2%;

• 70.4% of people said they are always or usually kept informed of changes, in the South West the range is 54.3%-84.9%.

People’s experiences of continuity in provision seem to be very positive, though outliers in the South West warrant investigation by commissioners.

Arriving on time can be a much more challenging element for providers to achieve, particularly given other findings in this report that highlight the unpredictability of need that staff might experience on the day and the often short time periods that are purchased.

Support. Stay. Save. (Alzheimer’s Society, 2011)[20] states that 80% of care workers say that to be able to care for the same person over a long period of time would be either very helpful or quite a lot of help in supporting them to remain at home.

4 Contracting and procurement

Research in the South West (South West Dementia Partnership, 2010)[21] suggests that:

• there is a slow move towards outcome-focussed commissioning of domiciliary care;

• there are difficulties in developing systems and processes that support this approach;

• specifications used in commissioning domiciliary care are becoming more likely to identify key outcomes that services would be expected to achieve. Achievement of these outcomes may be discussed as part of contract monitoring processes, though how these are measured, linked to the overarching contracting process or linked with individual support plans is less clear;

• local authority monitoring and billing systems often do not support flexibility, particularly electronic systems. This plays a role in providers reporting that they are able to offer much more flexible approaches to self funders;

• a generic approach is more common, there are few specialist dementia services in the South West;

• there are few dementia specific requirements in generic specifications. A number require dementia training to be provided but there is not a shared view of the most appropriate training;

• It appears that some of those involved in commissioning and procuring domiciliary care services do not always have a clear view regarding what they should expect from providers in delivering good dementia care.

5 Specialist domiciliary care services for people with dementia

A PSSRU study (Challis, D. et al, 2011)[22] recently concluded that it did not seem to matter in terms of cost and effectiveness whether a service was described as specialist or generic. What mattered was whether the service conforms to good practice or quality standards for dementia care. The evidence suggests that both can offer this. It also found that the amount and frequency of visits (or intensity of provision) and easy access to mental health advice and support were central to supporting people at home for as long as possible.

The research (South West Dementia Partnership, 2010)[23] carried out to inform this report indicates that there is limited evidence regarding differences in costs and effectiveness between specialist and more generic services.

Findings indicated that:

1 Effectiveness

• there is no one definition of what a specialist domiciliary care service for people with dementia actually is and offers;

• specialist services are more likely to provide more person-centred services, although this is not exclusively the case;

• specialist services are more likely to have more highly skilled and experienced staff, though not exclusively;

• specialist service providers are sometimes in a position to offer a range of support focussed on meeting a range of outcomes; from forms of peer support, activity based support and getting out and about, to counselling and psychological support, alongside support in the home;

• in terms of continuity, this can be provided by both specialist and generic services.

2 Cost

• specialist services tend to cost more, but there is a wide range in price across both specialist and generic provision and overlap between the two. The average cost of externally purchased generic home care is £15 per hour (NHS Information Centre, 2011, p.16)[24], the South West survey found costs of between £19 and £30 an hour for specialist services. In the PSSRU study (Challis, D. et al, 2011)[25], the average cost of generic care was £13.27 per hour, the average cost of specialist care per hour was, £16.23;

• additional costs for specialist services are thought to be associated with a range of organisational issues:  travel costs are often greater; (they generally cover larger geographical areas, they may have more missed calls and return visits associated with a more flexible approach); additional none service user contact time due to extra staff meetings and liaison with other services;  more time spent in training; more experienced staff who are paid more; additional telephone costs (extra communication).

3 Funding arrangements

• funding arrangements for one specialist service were a major contributing factor for the more flexible approach. They are grant funded and not paid by the hour.

4 Need, access and capacity

• there is inequity in terms of access to specialist services. People with similar levels of need can be accessing either specialist or generic provision;

• it is hard to identify where people with dementia are in the system since:

o many people do not have a diagnosis; [26]

o focussing specialist support on those with a diagnosis, as is often the case, will inevitably miss many others who do not have a diagnosis;

o current information systems do not collect, or reliably collect, data regarding people with dementia;

• 98% of home care workers responding to the Alzheimer’s Society survey (2011)[27] report they always, often or sometimes work with someone with dementia reflecting that supporting people with dementia is core business for domiciliary care;

• the capacity of specialist services is capped and does not reflect a level of need, it is often determined by the level of funding available at the higher cost;

• where specialist services are focussed on parts of the pathway for people with dementia this impacts on continuity of provision and relationships built up over time with staff.

5 Support from other services

• specialist services are often directly linked with specialist mental health provider services with easy access and back up support available;

• it would be difficult to offer the same level of support for all domiciliary care providers within the current capacity of community mental health provision.

Support. Stay. Save (Alzheimer’s Society, 2011)[28] found that 86% of care workers say more help and advice from experts whenever they needed it would help them in delivering support and 81% of care workers say training on working with people with dementia would be helpful.

Bridging the gap; how can we improve domiciliary care for people with dementia and their carers?

Mainstream dementia: providing domiciliary care for people with dementia should be seen as a mainstream activity.

For the future, even as self directed support becomes a reality for many people, it is very likely that there will still be a high demand, certainly over the short to medium term, for agency domiciliary support provided to those living at home. If 98% of home care workers say they currently support people with dementia this has to be seen as “core business” for mainstream domiciliary care, and this needs to be acknowledged and addressed in terms of appropriate service delivery that meets the outcomes identified by people with dementia and their carers.

The question of what the role of specialist services is in the domiciliary care market place remains, particularly if the cost of purchasing a specialist dementia service is higher than mainstream provision. Self-funders and families who top up on personal budgets may still prefer to purchase support from services who define themselves as specialist. However, it appears that the most cost effective solution for local authorities, given increasing demand, is for generic services to deliver the bulk of support for people with dementia purchased directly by local authorities; though generic may not be a helpful definition as more personalised care delivery develops. Commissioners will have to consider the need for any further services with particular expertise in supporting people with dementia within the range of services and support available locally. Possible models mentioned in consultation on this report are briefly outlined in section 4.9.

The research conducted for this report indicates that the large majority of current approaches to mainstream domiciliary care service provision are not yet delivering on Putting People First and the personalisation agenda or fully reflecting positive dementia care practice.

So, how can we move this forward?

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1 Be clear about what good dementia domiciliary care looks like

If community support for everyone is delivered in line with Putting People First (HM Government, 2007)[29] the personalised responses outlined should clearly result in improved outcomes for people with dementia and their carers.

However, people with dementia have some areas of particular need and face some particular barriers that will impact on the benefits that they might experience from this more generic personalised approach, if they are not taken into account. It is important to spell out what these particularly needs are and identify how they could be addressed. This section is covered in more depth in Appendix 3.

The following case study shows what support packages can look like for people with dementia and what can be achieved.

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The key point in all the literature about domiciliary care for people with dementia is that time and task based support is especially unhelpful.

1 Start with the person

“Ideally, a home based service should NOT simply be a care service – it should provide trained workers who can facilitate and support the person with dementia continuing to perform tasks and pursuing activities as before i.e. going to the library, taking part in social activities, music etc.”

Person living with dementia

Key points:

• building relationships with service users is a key part of the ‘work’;

• knowing a person’s life story or biography[30] is important when working with people with dementia for the following reasons:

o to support problem solving

o as a communication and engagement cue

o to identify preferred coping strategies;

• outcomes associated with engagement and relationships are particularly important for maintaining resilience for people with dementia and need to carry equal weight to those associated with personal care and daily living activities;

• an initial outcome might be securing engagement in the first instance.

2 Take an assets, rather than deficits, approach

It is crucial to:

• maintain a person’s resilience, both for the person with dementia and their carer;

• understand peoples cognitive abilities and difficulties, so that support plans can build on strengths and promote independence and resilience; (May, H., 2009[31]; Pool, J., 2008[32]; South West Dementia Partnership, 2010)[33]

• have a good understanding of balancing rights and risks (Department of Health, 2010)[34] and how this links with delivering outcomes, including application of the Mental Capacity Act (2005).

3 Ensure robust support management

Key points:

• assessment and support planning tools and processes need to support personalised delivery and reflect the perspective and particular needs of people with dementia; [35]

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• contingency planning is an important part of planning support;

• telecare solutions can be very effective in maintaining independence particularly in both understanding risks more fully[36] and in supporting risk management; (Clarke, M., 2009)[37]

• continuous reassessment of circumstances and preferences should be an important part of the provision of support.

4 Support and understand family members/carers

This cannot be emphasised too strongly. We know that:

• carers of people with dementia report higher levels of burden and stress than those caring for people with other conditions;[38]

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Carer of person with dementia

• carers of people with dementia should be a priority group for targeting assessment and provision of support;

• domiciliary care providers should work in partnership with carers to support the person with dementia and the carer;

• maintaining a carer’s resilience and ability to carry on caring, where this is their wish, is crucial in taking a preventative approach and maintaining someone at home.

5 Provide consistency and continuity

Staff who know the person can identify when needs change to support early intervention and prevention. Additionally:

• building relationships requires continuity;

• handing over to other services should be minimised to ensure continuity

• handover systems and processes should rigorously support continuity and understanding of a person’s particular needs.

6 Provide flexibility

Key points:

• the needs and abilities of people with dementia can change from day to day. It is important to be able to adjust service provision quickly and effectively;

• rapid response should be available to provide additional support in a crisis, including out of hours;

• night time and weekend cover should also be available.

7 Ensure access to reablement

The evidence supports the fact that people with dementia can benefit from reablement and rehabilitation approaches Department of Health, 2009) [39] From the perspective of service effectiveness and service efficiency they should not be excluded from mainstream provision and account should be taken of their particular needs. Reablement teams are well placed to be a source of dementia expertise in the community.

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2 Develop outcome based approaches appropriate for people with dementia

Further work needs to be progressed on translating overarching outcomes into support plans and identifying ways of monitoring and measuring achievement of outcomes. (South West Joint Improvement Partnership, 2010) [40] (Triangle Consulting, 2010) [41]

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3 Develop the Workforce[42]

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The following are key components:

Personal skills

• understanding what dementia is, how it is experienced, including cognitive support needs, and the importance of working from the perspective of the person with dementia;

• communication skills;

• understanding that behaviours we find challenging are expressions of physical or emotional discomfort and developing problem solving and coping strategies;

• the personal qualities of care workers are highly valued.

Support to domiciliary care staff

• promoting cultural change; care workers need to be more autonomous, self confident and have improved status;

• workforce development approaches that do not just focus on training courses but include ready access to advice, support and working alongside others with greater expertise;

• focus on workforce well-being and leadership.

Changes in provider role and functions

• new roles, new ways of working and organisational arrangements within provider agencies will need to emerge to support the utilisation of Direct Payments, Personal Budgets and Managed Accounts. Staff in support planning and managerial roles will need a good understanding of good dementia care practice.

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4 Ensure clear linkages with other services

Care workers need ready access to advice and support and commissioners need to consider where this should come from in the context of the local system. Links should be made with other service provision to improve delivery of domiciliary care for people with dementia in order to:

• ensure easy access to advice and support for domiciliary care providers and care staff;

• support signposting to early intervention and diagnosis;

• support engagement in the community;

• consider care coordination for the person living with dementia.

This should include dementia specific discussions in the context of:

• Transforming Community Services;

• Transforming Adult Services;

• the development of primary care responses to dementia;

• the development of older people’s mental health (OPMH) liaison services.

5 Provide additional, appropriate support in a crisis

As a person progresses on their journey with dementia there may be times when their needs, or the needs of their carer, escalate. Short term investment in more intensive support, potentially with input from some sort of specialist service (Community reablement, intermediate care, Community Mental Health Team, dementia specialist domiciliary care, primary care dementia nurses) depending on the nature of the escalation, could prevent the situation becoming critical. (Social Care Institute for Excellence, 2010)[43] (Department of Health, 2009)[44]

• important requirements of provision include rapid response and the potential for night time support;

• interventions should seek to return a person to their previous level of functioning, wherever possible, and help people to accommodate to any changes in their circumstances;

• there are significant benefits in maintaining current domiciliary care provision over any period of additional support from specialists. These include:

o maintaining continuity for the person with dementia

o the ability to utilise the regular care worker’s knowledge of the person being supported

o the opportunity for the regular care workers to learn from any additional specialist input.

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6 Take account of Quality, Innovation, Productivity and Prevention

• greater clarity is needed in fully understanding the cost implications of delivering more flexible models of provision, but any extra costs need to be considered in the context of these models delaying entry to long term care and preventing avoidable hospital admissions;

• consideration needs to be given to how people with dementia will be identified as a cohort to build cases for shifting investment to more effectively target prevention and early intervention. Commissioners will also need to better understand demand for any additional ‘expert’ provision to support mainstream services;

• the Quality, Innovation, Productivity and Prevention paper (South West Dementia Partnership, 2010)[45] reinforces messages about good prevention support and good crisis responses. It summarises the evidence base available from national and local sources to build business cases for changes in service configuration.

• The diagrams on page 31 illustrate, with indicative costs, what unfortunately can happen to people with dementia and their carers and an alternative approach, with much improved outcomes;

• scenario planning to address situations which commonly cause community provision to fail can aid service development. A range of scenarios gathered in the south west from people with dementia and their carers are included in Appendix 4 of this report;

• Windows of Opportunity: this new model of prevention and early intervention for people with dementia has been published by the Social Care Institute for Excellence (2011)[46] It describes a person’s journey with dementia and identifies transition points and windows of opportunity to intervene and provide support focussed on maintaining independence, resilience and well-being. It contains many examples of supportive interventions along the journey and a tool for mapping local assets. This is an extremely useful resource for commissioners in developing local support systems.

7 Improve contracting and procurement

Contracting and procurement processes need to support delivery of a more personalised model for people with dementia and commissioners and providers need to work in partnership to seek improvements in provision. There are considerable resources on the Social Care Institute for Excellence[47] and Putting People First[48] websites to assist, but progress is slow in domiciliary care in the South West.

Until there is a fundamental change to how support is purchased it is hard to see how progress can be made.

Key points include:

• further development of personal budgets[49] and Individual Service Funds, or ‘managed accounts’, will support providers in delivering more flexible responses;

• personal budgets not taken as a direct payment should be offered as a ‘managed account’ and arrangements that enable the individual (or their representative) to agree directly with the provide the what, how, who and when of any support provided should be the alternative approach for those who do not wish to go down the full self-directed route; (Putting People First, 2011)[50]

• the Audit Commission has produced a report on the financial management and governance implications of personal budgets to support councils in implementation; [51]

• it should be clear as part of the commissioning and procurement process how the provider’s ability to support people with dementia will be assessed. Dementia specific requirements could be included in the specification. If a more developmental, partnership approach is to be used with a less detailed specification, those assessing the ability of providers to deliver support should understand what good dementia care practice is and how they will assess a providers ability to deliver this;[52]

• the Dementia Quality Mark[53] can be adapted for use in domiciliary care to support quality assurance;

• outcome-focussed specifications should be developed that are less time and task specific and that support the principles of Putting People First (2011);[54]

• specifications should outline the expectation that providers will support people to engage in their local communities;

• blocks of support can be purchased to meet set outcomes, to be delivered over a set time period;

• financial and monitoring processes and approaches to authorising additional expenditure, (including electronic monitoring systems) must support flexible responses, for example by requiring reporting by exception and building in margins of acceptable additional provision and expenditure.

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8 Take account of the provider perspective

We need to learn more about what works best from a provider perspective to deliver appropriate, timely support for people with dementia and their carers. We can learn from domiciliary care teams, both specialist and generic, who are successfully delivering support for people with dementia and their carers. We want to know more about:

• models and types of provision

• organisational arrangements

• workforce development

• cost

• links with other services

• what providers need from commissioners.

Organisational arrangements that have been identified as beneficial include:

• locality based, small teams of workers;

• splitting of support planning and programming roles;

• documentation that facilitates a more person centred, outcome-focussed approach to support planning;

• building in time for extra communication and team support;

• greater autonomy for care staff;

• offering a range of support from high end personal care, through activity based interventions and getting out and about, to cognitive stimulation programmes. Also offering respite support for carers.

It is particularly important that providers have quality assurance systems in place and take a developmental approach to improving provision for people with dementia and their carers. This should focus on the experiences of the people who use the service and must be able to demonstrate that service users’ feedback has informed future delivery.

9 Consider potential roles for specialist dementia domiciliary care within the community support system

This section identifies the key areas where discussions highlighted a potential role for a service with particular expertise in supporting people with dementia at home.

1 Assessment, advice, support planning, additional capacity

A service could offer a liaison-type role for short term intervention, offering additional assessment, expertise in support planning, advice and support with problem solving, plus additional capacity, as appropriate. The service would be linked to the specialist older people’s mental health provider for backup support; or possibly primary care specialist dementia professionals, where these exist; or whoever is the most appropriate source of expertise given the local configuration of services. This could potentially be more cost effective than direct community psychiatric nurse style liaison for the numbers involved, but still have the advantage of easily linking into specialist expertise.

There are opportunities here for the development of reablement services to have particular expertise in working with people with dementia.

An additional advantage of this type of provision would be that having a handover period for new service users or working alongside current providers following a crisis should support workforce development in generic domiciliary care and support continuity of provision. The fact that this offers peer support would also be of benefit.

2 Support for those with very complex needs

A service could provide a very high level of expertise and cover support for those with the most complex needs. The cost of the level of skilled and intensive support required might mean this is not a viable option. Twenty-four hour cover tends to tip over into residential options being a more cost effective way of meeting need if this support is required over a longer term (duty to public purse arguments). However, residential options would also have to be in the “best interest” of the person and provide personalised support to meet individual need.

10 Support transparency and local accountability

Over recent years, people with dementia and their carers have begun to find a voice and are very clear about the nature of the support they require. As the Coalition Government’s proposals are realised in relation to transparency and local accountability, local people will be holding commissioners and providers to account for their performance in delivering on quality domiciliary care for people with dementia.

In the South West our vision is that the emerging South West Dementia Action Alliance and South West Dementia Declaration will support local accountability and provide a vehicle for driving up standards in dementia care.

In addition as people are given control over the resources for purchasing care via direct payments and personal budgets the choices they make will shape the nature of future support services. Commissioners and providers will need to adapt and respond to these changing requirements.

Next steps

1. To assist commissioners and providers of domiciliary care to reflect on what they should or could do to improve support for people with dementia, Appendix 1 contains two sets of “Questions to ask yourself”, one designed for domiciliary care providers and the other for commissioners.

2. To build on the analysis and resources to support improvement in provision contained in this report the South West Dementia Partnership has:

1. commissioned work from the United Kingdom Home Care Association (UKHCA) on the provider perspective on what works in delivering community support for people with dementia. This work will be completed at the end of June 2011; Contact catherine.pascoe@.uk for more information

2. commissioned research on what new models and evidence of best practice are emerging in terms of specialist mental health support for people with dementia in the community. This work will also be completed by the end June 2011; Contact kate.schneider@southwest.nhs.uk for more information

3. All reports will be widely distributed and posted on the South West Dementia Partnership website, .uk

4. Workshops for domiciliary care providers and commissioners in the South West will be held in October 2011 to further promote the domiciliary care reports and facilitate action planning for improvement (.uk/domiciliary-care-workshops/). Further information on this will be circulated. Contact carrie.morgan@.uk

5. Plymouth Council is leading work on the development of the South West Dementia Quality Mark (DQM) for Care Homes. It will take forward plans to adapt the DQM for domiciliary care during 2011; Contact deborah.butcher@.uk

6. The team in Gloucestershire working on the implementation of the National Dementia Strategy will take forward work on developing outcome measures in dementia services during 2011. Contact helen.vaughan@glos.nhs.uk

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[1] Department of Health (2009). Living well with dementia: A national dementia strategy. Department of Health, London.

[2] HM Government (2007). Putting people first: A shared vision and commitment to the transformation of adult social care. HM Government, London.

[3] Ibid 1.

[4] See the Mental Health Foundation Dementia Choices website for useful tools to assist with the development of self directed support specifically for people with dementia



[5] South West Dementia Partnership (2010) Domiciliary Care Key information report. and South West Dementia Partnership (2010) Domiciliary care provision in the South West for people aged 65 and over: Data set 2010. .uk/domiciliary-care

[6] Alzheimer’s Society (2011) Support. Stay. Save. Care and support of people with dementia in their own homes. Alzheimer’s Society, London.

[7] Challis, D. et al, (2011) Community support services for people with dementia: The relative costs and benefits of specialist and generic domiciliary care services. Personal Social Services Research Unit, Manchester University, Manchester.

[8] Department of Health (2008) Commissioning domiciliary care for people with dementia and their carers. London, Department of Health.

[9] Ibid 6.

[10] Department of Health (2010) Quality outcomes for people with dementia: Building on the work of the national dementia strategy. Department of Health, London.

[11] Dementia Action Alliance (2010). The National Dementia Declaration. Alzheimer’s Society, London.

[12] NHS Information Centre (2009) Personal Social Services: Home Care Users aged 65 or over, England 2008/09 Survey. NHS Information Centre, Leeds.

NB This data does not relate specifically to people with dementia, but people aged 65 and over receiving home care services, many of whom will be people with dementia.

[13] Ibid 6.

[14] Ibid 5.

[15] Ibid 12.

[16] Laing and Buisson (2010) Domiciliary Care UK Market Report 2010. Laing and Buisson Publications, London.

[17] Ibid 6.

[18] Ibid 2.

[19] Ibid 12.

[20] Ibid 6.

[21] Ibid 5.

[22] Ibid 7.

[23] Ibid 5.

[24] NHS Information Centre (2011) Personal Social Services Expenditure and Unit Costs England, 2009-10. NHS Information Centre, Leeds.

[25] Ibid 7.

[26] The National Dementia Strategy states that currently only about one-third of people with dementia receive a formal diagnosis at any time in their illness The South West has one of the lowest diagnosis levels in the country.

[27] Ibid 6.

[28] Ibid 6.

[29] Ibid 2.

[30] See the National Lifestory Network .uk

[31] May, H., et al, (2009) Enriched Care Planning for People with Dementia. Bradford Dementia Group, Bradford.

[32] Pool, J. (2008 edition) The Pool Activity Level Instrument for Occupational Profiling; A practical resource for carers of people with cognitive impairment. Bradford Dementia Group, Bradford.

[33] South West Dementia Partnership (2010) Person-centred support plan. .uk/care-homes/person-centred-support-plan/

[34] Department of Health (2010) Nothing Ventured, nothing gained: Risk guidance for people with dementia. Department of Health, London.

[35] Ibid 31, 32, 33

[36] See for example justchecking.co.uk, quietcare.co.uk and .uk

[37] Clarke, M. (2009) Telecare and Dementia – A to Z of Resources and References. .uk/_library/Resources/Telecare/Support_materials/DH_Care_Networks_-_Telecare_and_Dementia_-_Sept_2009.pdf

[38] Ibid 6.

[39] Department of Health (2009) Intermediate Care - Halfway Home. Department of Health, London.

[40] South West Joint Improvement Partnership (2010) A Framework for Adopting an Outcome Focussed Approach to Self Directed Support. .uk/_library/Resources/Personalisation/SouthWest/outcomes_Framework_.doc

[41] Triangle Consulting (2010) The Outcomes Star for later life. Triangle Consulting, Brighton. .uk/older-people/

[42] See the workforce development portal on the South West Dementia Partnership .uk/workforce-development/, Skills for Care .uk and Skiils for Health .uk.

[43] Social Care Institute for Excellence (2011) Windows of opportunity: prevention and early intervention in dementia. Social Care Institute for Excellence, London. .uk/publications/windowsofopportunity/

[44] Ibid 38.

[45] South West Dementia Partnership (2010) Quality, Innovation, Productivity and Prevention (QIPP) and Dementia. .uk/wp-content/uploads/qipp-dementia.doc

[46] Ibid 43.

[47] Social Care Institute for Excellence website

[48] Putting People First website

[49] A personal budget can be taken by an individual as a direct (cash) payment; as an account held and managed by the council in line with the individual’s wishes; or as an account placed with a third party (provider) and called off by the individual; or as a mixture of these approaches

[50] Putting People First (2011) Think Local, Act Personal. Putting People First, London. .uk/_library/PPF/NCAS/THINK_LOCAL_ACT_PERSONAL_17_1_11.pdf

[51] Audit Commission (2010) Financial Management of Personal Budgets; Challenges and opportunities for councils. Audit Commission, London.

audit-.uk/nationalstudies/localgov/personalbudgets/Pages/default.aspx

[52]for example case studies could be used to ascertain how providers would seek to support people with dementia.

[53] South West Dementia Partnership (2010) Dementia Quality Mark Operating Framework.

.uk/care-homes/dementia-quality-mark/

[54] Ibid 50.

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Improving domiciliary care for people with dementia

South West Dementia Partnership

Miss B.

Miss B is an 85 year lady with dementia who experiences episodes of dominant hallucinations and who lives alone with little family support. She was discharged from hospital and wanted to remain at home for as long as possible.

She was reluctant to allow Home Support Workers (HSW) into her home initially but was provided with consistent HSWs who had completed a pathway of dementia care training. It was felt that she required highly skilled HSWs who would use appropriate techniques and consistent approaches to gain her trust and acceptance of the care package.

As part of their training the Home Support Workers were encouraged to complete “lifestory work” when working with service users. The HSWs did so with Miss B and were able to obtain some information about the life Miss B had led and have a better idea about what was important to her in her past as well as what is important for her now.

Miss B was a seamstress and a wedding dressmaker; she also used to make all her own clothing. HSWs would present her with different choices of clothing on a daily basis so she could decide what she wanted to wear. They would also support Miss B to complete personal care tasks independently with encouragement, supervision and prompts. Miss B would work together with the HSWs with food preparation, when able to, making decisions on what she wanted to eat and having appropriate support to enable to her to complete this task.

Miss B has a dog she is very fond of and gets very anxious if she feels that she cannot care for it. The social worker felt that it would be detrimental to Miss B’s wellbeing if she could not keep her dog. The HSWs became involved in taking the dog out for short walks, prompting Miss B to feed the dog and assisted in maintaining hygiene in the home. Volunteers are now being sought to take the dog out on a regular basis.

Miss B. continued

The HSWs gained Miss B’s trust and built a routine that improved her quality of life. The HSWs worked closely with the mental health team in putting a contingency plan together for when they recognised signs of her starting to experience one of her hallucination episodes.

Miss B has been able to remain at home as she wishes and this is mainly due to the support provided by the home support team who have now managed to stabilise her care package with a consistent routine and a process to follow when she is unwell.

Gloucestershire have developed a ‘Living well handbook: My dementia story’ which provides ‘all the information I need, and that other people need to help me live well with dementia’

Contact: helen.vaughan@glos.nhs.uk

“ People take for granted that people know what it is like to live with dementia. “

Carer of person with dementia

Bristol City Council social care reablement team (STAR) see working with people with dementia as an integral part of their service delivery. They have a mental health nurse as a member of the team and access to mental health liaison support. Assistive technology is seen as a key tool available to empower and enable people with dementia.

Contact jayne.clifford@.uk

Carewatch Care Services have developed an electronic outcome based monitoring system that:

• identifies and records the outcomes to be met

• identifies and plans the support to be provided to meet these outcomes

• records progress and timeframes in achievement using a scaled measurement.

Plans are developed and reviewed in conjunction with people using the service who rate achievement.

Contact: Melanie Buckley, mbuckley@carewatch.co.uk

“ In my experience, care workers are too often undervalued and unsupported in their demanding roles. Training is absolutely vital in helping workers to empathise with people living with dementia. It allows them time to reflect on and develop ways of meeting the emotional and intellectual needs (not just ‘care needs’) of their clients. “

Person living with dementia

Experience in Gloucestershire suggests that much can be achieved in improving outcomes for people with dementia through focussed workforce development in domiciliary care. The key to the Gloucestershire model is seen as offering continuous development to Dementia Link Workers who play a pivotal role.

(See Appendix 2 for more information on Dementia Link Workers)

Torbay has a small specialist community support team who are highly skilled at working with older people with mental health needs.

Their remit is to work with people who are hard to engage. They provide a short term intervention, which is free of charge for the first 6 weeks and is aimed at befriending and building up a relationship with a person. They also work alongside mainstream agencies if a person’s life is becoming more complicated and the agency requires additional assistance in supporting a person at home.

The community support team work closely with the specialist older people’s community mental health team.

Key contacts: Jenni Hazell, jenni.hazell@

Sue Smith, sue.smith19@

Angela Osborne, angela.osborne@

Wiltshire Council is developing an outcome based commissioning approach focussing on reablement and community engagement.

See Appendix 2 for more details.

Bristol City Council has an enhanced service specification, which allows for an enhanced hourly rate to be paid in certain circumstances, which might include enabling a provider to put in extra training or management support to enable a care package to get established, where there are particular challenges presented by the service user or their situation

Contact: Liz.Sutton@.uk

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