United Kingdom - Scotland
Social support systems
Organisation and financing of social support to people with dementia and carers
Background information on the social/healthcare system in Scotland
As part of the process of devolution, the UK Parliament based at Westminster (in England) transferred certain powers to three bodies – the Scottish Parliament, the National Assembly for Wales and the Northern Ireland Assembly.
In 1998, the Scotland Act passed into law. This led to elections in May 1999 for the first Scottish Parliament for almost 300 years. The Scottish Parliament does not have a second chamber (equivalent to the House of Lords). It has 129 members who are elected for a fixed four-year term.
1 July 1999 marked the transfer of powers on devolved matters from the Secretary of State for Scotland to the Scottish Executive. Devolved matters are those that are not included on the list of reserved matters for which the UK Parliament retains responsibility. Health is classed as a devolved matter and as such the Scottish Parliament can pass its own laws in this domain.
The Scottish Executive is made up of the Scottish Ministers. It is the administrative arm of government in Scotland and is responsible for health services. More precisely, it determines national objectives for health services and provides a clear statutory and financial framework for NHSScotland (Scottish Executive and Scotland Office, 2007).
The organisation of social support for people with dementia and carers
The statutory sector (local authorities and National Health Service) works together in the planning and commissioning of services from a variety of providers, with local authorities taking the lead. The statutory sector agencies are accountable to the Minister for Health and Community Care. Service provision is shared among the statutory sector, the informal sector, the voluntary sector and the private sector:
- Statutory sector – local authorities are direct providers of social care service. However, since the National Health Service & Community Care Act 1990 they have been expected to be facilitators of care and to maximise the use of private, voluntary and informal sector provision.
- Informal care – the huge contribution to care provision that is made by informal carers is now being recognised as a crucial component of social care provision.
- Voluntary sector – this sector is one of the largest providers of community care services in Scotland. Alzheimer Scotland is contracted by the local authority to provide services to people with dementia in most local authority areas in Scotland.
- Private sector – the private sector provision in community care tends to be mainly within the elderly care home sector.
- The regulation and inspection of care services has been carried out by the Scottish Commission for Regulation of Care since 2002, which is a non departmental public body. Prior to this the regulation of care services was carried out by the registration and inspection units in the 32 local authorities and 12 health boards.
The Minister for Health and Community Care has overall responsibility for health and social care policy in Scotland. The Scottish Executive Health Department is responsible for both the National Health Service for Scotland and for the development and implementation of health and social care policy.
Joint working between the National Health Service and local authorities has been the policy direction since the late 1990s. This was introduced by the ‘Modernising Community Care’ Action Plan (Scottish Office 1998). A Joint Future Group was established in 1999 to encourage joint working. Initiatives include single assessments of clients with information shared between health and social care services and the joint resourcing of services.
Alzheimer Scotland and other voluntary sector organisations receive state funding for developing and providing specific services. The funds they receive from the local authority are generally for services such as day care and home care for a specific number of clients. Central government provides some core funding for voluntary sector organisations, and also some funding for specific activities such as information campaigns, training for staff or specific projects of national relevance. Funding is generally time limited and gaining ongoing funding for services is problematic. Most organisations run on time limited funding from a number of sources and have to continually seek new funding from a variety of organisations e.g. charity trusts, national lottery etc.
The overall funding of social support for people with dementia and carers
Community care services commissioned or provided by the local authority are funded primarily through Grant Aided Expenditure from the Scottish Executive. This comes from general taxation.
The legal framework surrounding the provision of social support
The following laws are relevant to the provision of social support to people with dementia and their carers:
- Social Work (Scotland) Act 1968 – placed the organisation and provision of welfare services for ‘persons in need’ with local authority social work departments. This act introduced local authority responsibility to promote social welfare, and forms the basis of community care regulations.
- National Health Service & Community Care Act 1990 – policy aim of shifting the balance of care from hospitals and institutions to community based settings. It reduced direct central government expenditure on residential care and placed a duty on local authorities to assess the need for community care services. It applied to the elderly, disabled and those with mental/physical health problems.
- Carers (Recognition & Services) Act 1995 – allowed carers to request an assessment of their needs when the person being cared for is being assessed or re-assessed. The Community Care & Health (Scotland) Act 2002 extended this to allow carers to have their needs assessed independently.
- Direct Payments Act 1996 – gave local authorities the power (but not the duty) to provide payments to those assessed as requiring community care services to enable them to directly purchase their own services. Community Care & Health (Scotland) Act 2002 made it a duty for local authorities to offer direct payments to all people with community care needs from June 2003.
- Adults with Incapacity (Scotland) Act 2002 – provided new safeguards to protect the interests of people with dementia and new ways for people to make their own choices about who will handle their affairs if they cannot do so themselves.
- Regulation of Care Act 2001 – overhauled the registration and inspection of care services and the social services workforce. Established the Scottish Care Commission for the Regulation of Care and gave government ministers the power to produce care standards for services.
- Community Care and Health (Scotland) Act 2002 – introduced free personal care for people over 65 and the regulation of charging for home care services. It included measures to enable greater joint working between NHS and local authorities. It also gave local authorities a duty to identify as well as inform carers of their right to a needs assessment, independent of the person being cared for.
There are also numerous relevant decrees and regulations but there are simply too many to list here.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
Scotland needs a better level of funding for dementia care. It also needs better strategic planning to ensure there is an equal level of service provision across the country. At present the care on offer is dependent on where a person lives. Alzheimer Scotland recently asked all local authorities if they provided overnight care to people with dementia and more than half cannot provide it as part of a package of care. Research carried out by Alzheimer Scotland in 2004 identified:
- 27% of people with dementia and their carers received a short break in a year
- 10% of people with dementia received home care
- 11% of people with dementia received day care
People with dementia use a range of services but there is a lack of specialist services for people with dementia. Indeed, Alzheimer Scotland has found that some local authorities are moving towards funding larger generic services rather than specialist services, as these are less costly to run. There is a need for health and social care staff to be more aware of the illness and positive approaches to communication and care.
People living in rural areas
There are day care centres in rural areas but many find it difficult to survive financially. Difficulties in providing services in the rural areas of Scotland include lack of appropriate venues, a shortage of appropriate people to provide the service and the population being thinly dispersed over a large area. This requires creative options, such as Alzheimer Scotland’s day care that is provided in the sitting rooms of bed and breakfast accommodation when there is a sufficient number of people requiring this service within a manageable geographically area.
People with different types of dementia
There is a lack of provision of long-term respite care for people with alcohol-related dementia.
People from ethnic minorities
There are some initiatives directed towards people from ethnic minorities. These initiatives are area specific and are unlikely to meet the needs of everyone. Alzheimer Scotland runs a Polish and Ukrainian Service that offers information and advice to Eastern European older people. However, this service only covers a limited geographical area in Scotland. The Scottish Executive runs a grant scheme for voluntary organisations to help ethnic minority groups access mainstream services. Grants are for time limited periods and only a small amount of applying organisations actually receive funding. Alzheimer Scotland provides information in a number of languages. Statutory organisations also provide information in different languages and interpreters when required. These initiatives are sometimes partly or fully funded by the State. Some are fully funded by the service users. Some services are provided on a voluntary basis by churches and community groups in response to the local population profile.
Younger people with dementia
There is a lack of provision of respite/short breaks, long-term respite care services and appropriate day care for younger people with dementia.
Services and support for people with dementia and their carers
Types of care
Day care centres exist but the level of care available is not sufficient and waiting lists are common. The availability of day care is dependent on location. Town day centres tend to be oversubscribed and rural centres struggle to survive financially. The level of funding available for specialist day care is often not sufficient to cover full costs and there can be a need for fundraising. Day care suffers from an old fashioned image. There is a need for more person-centred care and more imaginative care. There is also a need for services that meet the needs of younger people with dementia. Research carried out by Alzheimer Scotland revealed that only 11% of people with dementia receive day care (2004).
Day care in day care centres may be partly or fully financed by the State but some carers have to pay the full cost. This depends on their financial situation.
Voluntary sector organisations (NGOs) are often the providers of day care services, usually funded by block contracts and spot purchase from local authorities. Small community-based organisations such as churches and community centres also run day care in some areas, on a similar basis.
Respite care services in the home exist but the level of respite care at home available is not sufficient. There are waiting lists and the eligibility criteria are too restrictive. Also, respite care at home is mainly for people with high support needs and there is not enough staff to provide services. Alzheimer Scotland recently carried out a survey of all Scottish local authorities and found that more than half do not provide overnight care as part of a care package.
Short-term respite care services are available but the level of provision is not sufficient. It is very often not seen as a planned package of care. There is a lack of choice and also appropriate provision for younger people with dementia. Alzheimer Scotland’s research identified that only 27% of people with dementia and their carers received a short break in a year (2004).
Long-term respite care services are not considered sufficient. There is a lack of provision for people with high support needs, alcohol-related dementia and younger people with dementia. Available services are difficult to access and there is limited choice.
The different kinds of respite care may be partly or completely financed by the State. This depends on the individual circumstances of the services users who may have to partly or fully pay for respite care themselves. Short-term respite care provided by the National Health Service is free at the point of delivery. However, most short-term respite is provided in nursing homes.
Long-term residential care
According to the report “The Dementia Epidemic” (Alzheimer Scotland, 2007), about 40% of residents in long-term residential care have some form of dementia. For people on low incomes and few savings the cost of full-time residential care is met by the state i.e. local government. However, for people with modest savings and income they pay for their accommodation/hotel costs. This is means tested and personal property is included in the calculation. In Scotland, personal and nursing care is free to the service user because it is paid for by local government.
Palliative care at home is not sufficient for people with dementia. Service provision is very patchy and non existent in some areas. Dementia is not widely recognised as an illness that requires palliative care.
If provided as a medical service, it is free at the point of delivery. Otherwise, financial support from the State for this service depends on individual circumstances.
Palliative care provided at centres exists but is insufficient. There are tight eligibility criteria and people with dementia are only likely to qualify if other medical problems, such as cancer, become a priority. The State completely funds palliative care if it is in a hospital setting. There are also hospices which provide end-of-life care, mostly for people with cancer and younger people. They rely on fundraising for their income.
Monitoring in the home via alarm systems
This type of alarm systems is widely used by local authorities and housing associations for vulnerable groups including the elderly. Depending on individual circumstances, the State contributes partly or fully to the cost of this service. The use of other types of equipment in aiding care is dependent on the extent to which the local authority has invested in the technology.
Personal assistance and home help
Free personal assistance/care
Free personal care is defined as “the means of care which relates to the day-to-day physical tasks and needs of the person cared for and to mental processes related to these tasks” . It is provided cost free to people over the age of 65 years. People with dementia under the age of 65 are not entitled to free personal care and would be subject to means testing. Medical care is free at the point of delivery. This could apply to assistance dealing with incontinence and skin care.
Available services include:
- Assistance with personal hygieneThere are often waiting lists to receive assistance with personal hygiene. Home carers have a short time allocated to each person and do not have enough time to do everything. There is a lack of staff for evening care.
- Supervision/assistance taking medication - There has been a lack of clarity in guidance and some local authorities do not consider supervision/assistance taking medication as free personal care. Consequently, they do not provide it.
- Assistance eating and drinking - As home carers are often limited for each visit and are rushed, there is a lack of assistance with eating and drinking in the evening in many areas. Please see section on “home help” for other services linked to meals.
- Assistance with mobility e.g. lifting, walking and moving - There is an issue about people getting this type of service at times of the day when it would best suit them rather than fitting into the care providers’ schedule. There is a lack of staff for evening cover.
- Assistance dealing with incontinence - An assessment would be carried out by a health care worker and incontinence pads provided. Ongoing day-to-day support would then be provided by home care workers as part of personal care. The amount of time home care staff have is an issue and evening care is a problem. Medical care is free at the point of delivery.
- Assistance with skin care - This could be provided by a district nurse or home care worker. Home care staff are often overstretched and this would not be a priority.
Other services which do not fall into the “free personal care” category
The provision of companionship services and social activities is patchy and it can be difficult to get funding as these services are not seen as a priority. There are not enough activities suited to younger people with dementia. Financial support from the State for these services is dependent on individual circumstances and is means tested. Some community based organisations such as churches and community centres provide these services, but this varies widely from area to area.
The level of service provision for occupational therapy/ergotherapy is not sufficient and is non existent in some areas. There are waiting lists and people can wait a long time to access this service. It is, however, part of the National Health Service and is free at the point of delivery.
Assistive devices are not being used to their full potential and it can be very slow for people to get access. There are often waiting lists due to annual budget limitations. Individuals may have to contribute dependent on circumstances.
Support for home adaptation/transformation would depend on whether the person lived in public or private housing. Grants are available for people in private housing who meet the criteria. Support also depends on individual financial circumstances A local authority or housing association landlord may undertake work or offer a move to more appropriate housing.
Assistance with housework is available but subject to means testing. There are issues with waiting lists and the amount of time care workers have allocated to each client. Services provided will also vary between local authorities. It may be provided on a voluntary basis by churches and community groups but again provision varies between locations.
Assistance with the preparation of meals for those over 65 is provided as part of free personal care. However, there has been a lack of clarity in guidance and a few local authorities still do not see this service as free personal care. There are also issues with waiting lists and the amount of time care workers have allocated to each client. For people under 65, there is means testing for assistance with the preparation of meals. The delivery of meals is not covered by free personal care. Means testing is applied and most people make a contribution to meal delivery. Assistance with the delivery of meals is also provided on a voluntary basis by churches and community groups but this varies between locations.
Assistance with shopping is available and means tested. There are issues with waiting lists and the amount of time care workers have allocated to each client. It is also provided on a voluntary basis by churches and community groups but provision varies between locations.
Hospitals and local authorities run transportation to and from their services for those with mobility problems. Day centres usually provide transport to and from the day centre. Financing of various transportation services depends on how each system operates. It is also provided on a voluntary basis by churches and community groups but provision varies between locations. With regard to public transport and parking, everyone over the age of 60 is entitled to free bus travel and the “blue badge scheme” entitles people to free parking. A diagnosis of dementia does not, however, provide automatic entitlement to a blue badge.
A laundry service may also be provided as part of a care package from the local authority but it is means tested.
Psychosocial support and training for people with dementia and carers
There is a general information service (covering access to services available in Scotland) which is completely funded by the State but it is not sufficient and people do not receive a consistent level of service. Alzheimer Scotland provides an information service and a 24 hour free phone telephone helpline. However, people with a new diagnosis of dementia may not be made aware of its existence at the time of diagnosis. Alzheimer Scotland does not charge people with dementia or carers for the provision of information. Its information and helpline service is not funded by the State but by fundraising. There is no charge for information provided by the National Health Service. There are also other sources of information that are dependent on initiatives in particular areas.
Counselling services for people with dementia exist but there is not an adequate level of service. For carers, counselling services are not sufficient and provision varies between locations. Counselling is funded by the State and through fundraising.
Alzheimer Scotland provides counselling for people with dementia in some areas through its services and branches. However, service provision is restricted by funding. In some areas counselling or support groups are organised by health professionals such as community psychiatric nurses. Overall, access to this type of support is very patchy but service users are not charged for this service. Alzheimer Scotland also provides counselling for carers but coverage is limited by funding. It is also provided on a voluntary basis by churches and community groups with provision varying between locations.
The provision of holiday services for people with dementia is unlikely to meet demand. A carer can ask the social work department to assess the needs of the person with dementia, which includes the need for a holiday or respite care. If they assess the person with dementia as needing a holiday they have a legal duty to provide one under Section 2 of the Chronically Sick and Disabled Persons Act. If the social work department assess the person with dementia as needing respite care they should provide it, but they are not legally obliged to do so. In both cases, they charge for this according to the person’s income.
Holidays for people with dementia and for carers are provided on a voluntary basis by churches and community groups, but provision varies between locations. Some Alzheimer Scotland services and branches have organised holidays for small groups of carers and people with dementia.
Holidays for carers may be facilitated by providing respite/short breaks for people with dementia. Other services are dependent on initiatives by local authorities or voluntary organisations. However, services are not sufficient to meet the number of carers who would benefit from receiving a holiday.
Training for carers is available but the level of service is neither sufficient nor consistent. Alzheimer Scotland provides a carer training programme and also runs information days aimed at carers. Its carer training services have also been purchased by local authorities. Training costs may be partly or fully funded by the State. It is therefore necessary to rely on fundraising.
Work/tax related support for people with dementia
People with dementia come under the Disability Discrimination Act 1995 which prevents discrimination on the grounds of their disability. Employers have a duty to make reasonable adjustments to a job or workplace if they are aware of the person’s disability. However, it is likely that most people would have given up their employment before they received a diagnosis of dementia.
People with dementia are not entitled to a tax refund or incentive for employing a person to provide home care services.
Allowances and benefits
If the person with dementia needs care or supervision, they may qualify for Attendance Allowance (over 65) or Disability Living Allowance (under 65). Attendance Allowance is covered by the Social Security Act 1975, whereas Disability Living Allowance is covered by the Disability Living Allowance & Disability Working Allowance Act 1991.
These two benefits do not depend on the person’s income. They are paid at different rates according to the person’s needs. Disability Living Allowance has two components (care needs and mobility needs) whereas Attendance Allowance has only one. Also, the Incapacity Benefit can be paid to someone of working age who is not able to work because of illness or disability and has paid enough National Insurance contributions. If not, he or she can still claim Income Support.
If assessed as requiring community care services and the person wishes to purchase their own services, the local authority has a duty to offer direct payments. This is covered by the Community Care & Health (Scotland) Act 2002.
There are a number of benefits that people with dementia will qualify for as a result of their age rather than the diagnosis of dementia. These benefits are covered by various Acts of Parliament. They include:
- Free TV licences for everyone over 75 years
- Free/concessionary travel across Scotland for everyone over the age of 60, which means that the majority of people with dementia are covered. However, the rules on disabled entitlement do not automatically entitle younger people with dementia.
- Winter fuel allowance for everyone over 60 years (£200 per annum)
Local authority social work departments operate grants for home adaptations for people with a disability. There are also a number of Care and Repair Schemes for elderly and disabled people. However, their coverage is not uniform across the country. The relevant law is the Housing (Scotland) Act 1987.
Work/tax related support for carers and carer allowances
Time off work and flexible working
Carers are not entitled to paid time off work for caring. However, there is a statutory right to time off for dependents, but this is unpaid. This was introduced with the Employment Relations Act 1999. In addition, employees are entitled to take a reasonable amount of time off if they have worked for their employer for at least one year and there is an emergency relating to the person they care for. This can include a breakdown in care arrangements, the person being cared for falls ill or there is a need to make longer-term arrangements for care. Any additional entitlement would be at the discretion of the employer.
Flexibility for carers of people with dementia is at the discretion of the employer. The Employment Act 2002 gives working parents of disabled children under 18 years the right to request flexible working arrangements. However, this does not apply to people caring for older people. The Carers (Equal Opportunities) Act 2004 places a duty on local authorities to consider carers’ outside interests, including work, when carrying out an assessment.
Benefits and payments
‘Home Responsibilities Protection’ applies to a carer who has been looking after someone long term and does not have sufficient qualifying years for the basic state pension. This was introduced with the Social Security Pensions (Home Responsibilities and Miscellaneous Amendments) 1978. Carers do not qualify for this automatically. They must either be in receipt of Income Support or caring for someone regularly for over 35 hours a week who is in receipt of Attendance Allowance or Disability Living Allowance.
Carers may be eligible for Carers Allowance if they care for someone at least 35 hours per week and that person is in receipt of Attendance Allowance or Disability Living Allowance. The Carers Allowance (originally Invalid Carers Allowance) was introduced with the Social Security Act 1975. A carer will not receive carers allowance if they earn more than £84 per week (after deductions). The amount of Carers Allowance is also reduced by a number of other benefits including the state pension. The highest amount of carers allowance is £46.95 per week.
Unless otherwise stated, information provided by Kate Fearnley (Alzheimer Scotland) between April and September 2007.
- Alzheimer Scotland (2007), The Dementia Epidemic , Where Scotland is now and the challenge ahead , Alzheimer Scotland
- Scottish Executive (2007), official website: http://www.scotland.gov.uk/Topics/Health
- Scotland Office (2007), official website: http://www.scotlandoffice.gov.uk/devolution/scottish-parliament.html
Last Updated: mercredi 15 juillet 2009