Response to Scottish Labour manifesto consultation - second stage

Introduction

Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist and personalised services to people with dementia and their families and carers in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website and our wide range of publications. We welcome the opportunity to comment on the Scottish Labour second stage consultation on Ideas for a fairer Scotland.

General comments

There are currently 71,000 people with dementia in Scotland; around 2,300 of whom are under the age of 65. Dementia is the second highest contributor to years lived with a disability in people aged over 60 . Dementia is a key health issue facing the nation over the coming decades. As our population ages, the number of people with dementia in Scotland is set to double over the next 25 years.

Alzheimer Scotland is hopeful that the Scottish Labour Party will provide its continued support to the realisation of Scotland’s National Dementia Strategy over the initial three year implementation period and then as the Strategy is developed in future years. It is essential the care of people with dementia and support for their families is given high priority and we would want to see this reflected in the Scottish Labour Party Manifesto.

Comments on consultation paper

Healthier Scotland

Alzheimer Scotland supports the removal of the barriers between health care and social care services; multi-disciplinary working is essential, as the needs of people with dementia and their carers do not fit neatly into health board or social work defined parameters.

Tackling health inequalities

Dementia is the umbrella term for a number of complex and progressive neurological conditions of which Alzheimer disease and vascular dementia are the two most common forms. There is no single cause, and no way of definitely preventing the onset. However, many factors influence an individual’s risk of developing dementia. Some of these, such as age or genetics, cannot be changed. But lifestyle factors are also linked to the risk of dementia; these include diet, exercise and social stimulation. Raising awareness and providing opportunities for healthier lifestyles, in order to prevent dementia, is an important part of tackling health inequalities as our population ages.

Improving our health service

Alzheimer Scotland agrees with the need to reduce the distance between diagnosis and treatment/support package implementation. We also support the need for a strong focus on prevention and anticipatory care, appropriate support for person centred care; with improve psychological support and service coordination in relation to long term conditions.

Improving Scotland’s mental health

Alzheimer Scotland agrees that early intervention is crucial in securing positive mental health outcomes and can prevent the need for more expensive outcomes later on.

Antipsychotic drug treatments are often prescribed to people with dementia as a first resort in response to behaviours that other people find challenging. Whilst the use of these treatments can be appropriate were symptoms are severe and alternative approaches have failed, there is wide spread inappropriate prescribing of the drugs. There is a need for person-centred approaches that focus on the needs of the individual and the adoption of alternative approaches to managing behaviour that challenges will reduce the inappropriate of us of antipsychotic drugs. We support the commitment in the National Dementia Strategy to reduce the level of prescription during 2011 and further reductions in future years. We also agree that it is essential the accompanying measures include the setting of dementia specific care standards and training for all health and social care staff supporting people with dementia across care settings and put in place as a matter of urgency.

Response to consultation questions

How do we ensure early intervention and greater support at the onset or identification of a chronic disease?

Dementia is an illness and not a natural part of ageing; there is a need to increase public awareness of the benefits of early diagnosis. There is also a need to develop post diagnostic support at that stage as well as care planning with a flexible budget to help people to maintain their natural supports from an early stage in the illness and an indicative budget for future care planning to follow the person as their needs progress.

How can we improve step-up and step-down services?

These services are an essential part of avoiding inappropriate hospital admissions for people with dementia and their carers. People with dementia who have other health problems are more likely to be admitted to hospital; are more likely to stay longer in hospital and then be discharged directly to a care home.

When in hospital people with dementia should be treated with the same high quality of individualised care as other patients; on discharge, where the person was previously living at home, facilitating a return home should be a starting point.

With an ageing population, how can we improve services for older people such as those required for Alzheimer’s treatment and support? How can we make care packages more person-centred and personalised? What should support packages for carers include?

The distance between receiving a diagnosis of dementia and support being put in place is significant; we are concerned this is set to increase with tightening eligibility criteria for social care and reducing levels of public sector funding. Dementia is a progressive long-term condition; there is an opportunity to engage with people with dementia and their families at an early stage in the illness. Support can then be planned in a way that maximises their natural supports and community links.

Social work resources should be structured so as to facilitate individualised funding, with a fair and equitable budget to allow support to be designed around the person with dementia and their family, and a variety of options for managing the social care money to suit individual circumstances.

Personalisation can deliver better outcomes for everyone. It fuses together state supports with the natural supports in people’s lives and will not only lead to far better and more creative support, but will also deliver true value for money. The earlier we intervene and support people with dementia in this way the better, as research has demonstrated, we can apply a personalised approach at every stage in dementia practice .

Most support for people with dementia is provided by informal carers, typically family members. Family carers need support in order to maintain the caring relationship and their own health and well-being.

How can we improve procurement measure to ensure the best standards of social care are delivered?

Local authorities should develop a preventative and planned approach to funding support for people with dementia and their carers throughout the journey of the illness, taking a long term view on the cost of care. There should be a focus on value for money and the best outcome, with the removal of restrictive cost ceilings and an unlocking of resources to facilitate the creation of a range of options open to families as the needs of the person with dementia progress.

In future, the procurement of services for people with dementia will have to meet the forthcoming national dementia care standards which will apply across settings. It will be necessary for service specifications to comply. This will have implications for the training of care staff, and the commissioning of specialist dementia care services.

How do we ensure that any system of direct payment properly reflects the costs of delivering a decent service?

The number of direct payments for a person with dementia is very low; research indicates that there are only around 300 payments across Scotland . There is a need to increase awareness through publicity and impartial information, so that people with dementia and their carers are aware of what is involved in taking on a direct payment, ahead of an assessment of their needs.

There is a need for the Scottish Government to work with local authorities to ensure parity in the operation of direct payments, so that recipients in different areas have equal flexibility and choice over how and when they spend their direct payment, providing it is meeting their assessed needs. Data on local authorities various direct payments rates and criteria demonstrates the differing levels of flexibility; Scottish local authorities have a wide range of different direct payment rates and use different criteria to determine what level is paid to each recipient .