Response to the Scottish Government consultation on Respite Care Guidance

Introduction

Alzheimer Scotland is Scotland’s leading dementia charity. 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 services such as day care, home support and carer support in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website (www.alzscot.org) and our wide range of publications.

There are currently 58,000 - 65,000 people with dementia in Scotland, 1,350 – 1,650 of whom are under 65. Dementia is a long-term condition which gradually and inexorably impairs every aspect of a person’s mental function, from memory and decision-making to the activities of daily living and personal care. The complex, unpredictable and progressive nature of the condition mean that dementia has a profound impact both on people with dementia and on those who care for them. The projected rise in numbers of people with dementia due to our ageing population is one of the key health and care challenges which faces Scotland.

We welcome the opportunity to comment on the draft respite guidance. We have considered the purpose, actions and expected outcomes detailed at the beginning of the document in answering the consultation questions. Our response has been informed by people with dementia, carers and people working in dementia care.

Consultation questions

Main strengths and weaknesses of the draft guidance

A weakness of the document is that it is too general and does not provide sufficient detail. Whilst acknowledging that it is neither possible or desirable to be prescriptive it is important to provide robust guidance to improve respite services across Scotland in order to move away from the situation where the level and quality of respite services available is determined by where a person lives.

There should be a clearer distinction between planned and emergency respite in the guidance document. There should also be strict guidelines on categorisation of services for reporting purposes. Day care, planned respite and emergency respite services should be separated out so the level of service provided is known and it is clear if funding is being diverted from planned to emergency services.

The focus on prevention is positive. Given the current financial climate in some local authorities we are concerned that respite will only be given to those reaching crisis point.

What is missing

The guidance should cover the rights of people to access respite care and guidance on the publication of these rights. People need to know what is available in order to ask for it. The document is weak on enforceability, there should be more than just a requirement on authorities to report levels of service provided.

The guidance should give more emphasis to providing positive encouragement for people to use respite care. It is important that respite is viewed positively as part of ongoing care, rather than something that is a last resort when caring arrangements break down.

Terminology

Terminology used should be consistent and easily understood so that it is clear what is being provided. There should be a clear distinction between overnight respite covering a number of days or weeks and other forms of respite such as day care. The definition of respite as including day care and home support services as well as overnight breaks makes the volume appear larger and understates the need for overnight breaks.

Emergency breaks should not be categorised as providing respite; whilst they do provide relief in crisis situations they are not the same as planned services.

Terminology has implications for how the service is viewed. Respite implies that the service is being provided to give the carer a break, whereas a short break implies that it is also intended to be a positive experience for the person being cared for.

Strategic planning

Whilst this section outlines important elements of strategic planning, it does not provide detail in order to provide a common standard for planning. The document acknowledges that there is considerable variation in the extent to which authorities have planned their respite services. More detailed guidance is required to outline the level of planning necessary for the provision of flexible respite services for both planned and emergency provision.

The document states that strategic plans should include measures for monitoring provision and need but does not set or give guidance on how to set a minimum appropriate level of respite for a given population. Planning respite services for people with dementia should be based on local dementia prevalence statistics together with consideration of appropriate types of care to meet the needs of people in different stages of the illness.

There is no mention of housing providers, local authority or other, who should be explicitly involved, for those who need to be supported better at home.

We welcome the recognition that there is a place for NHS respite for some people. There need to be clear criteria on who would benefit most from this as it is expensive.

Information provision

We support the guidance on information provision and the adoption of a Respite Bureau or some form of information resource on all respite provision and availability for an area. People should be able to find out easily what is available, rather than being reliant on being informed by professionals. A publicly available national information resource would also highlight gaps in provision.

It is likely that different standards of practice will continue in different areas as the document is weak on enforceability. People with dementia are reliant on staff to tell them what services are available and this does not always happen; one carer reported not finding out about respite which could have helped her care for her father with dementia until after his death. Staff do not always know everything that is available and people may be missing out on the respite that would be best suited to their needs.

Planned respite would work best with someone in a brokering role managing the process to make sure available provision is well used. This may be a role for the voluntary sector and would also give a single point of contact.

The guidance should include good practice examples such as the Short Breaks Bureau model adopted by Falkirk Council. There should be opportunities to share examples of good practice across Scotland.

Other associated professionals, such as GPs and primary care staff, should also be aware of what respite is available in their area so they can inform those they come into contact with who are not known to the social work department.

Access to services/eligibility

Carers are sceptical that the different types of respite outlined would become a reality and felt they were more of a wish list.

Emergency respite should be separated from planned respite, as they are responding to different circumstances and have different purposes.

The list of those to whom respite should be available to focuses solely on carers and makes no mention of people being cared for. This serves to reinforce respite being something that is provided for the benefit of the carer, rather than being something that should also be beneficial for the person being cared for.

People with dementia living alone may benefit from short periods of respite in order to help them to continue to live at home and should not be excluded because they do not have a carer. Similarly people with dementia and their carers may not want to be separated; breaks should be available together.

Charging

Discretion on setting charging practices is too vague; ‘ reasonable’ is a subjective term and is likely to result in different practices being adopted in different areas. Setting a flat sensible rate for short breaks can make it more attractive and is fairer as people are not disadvantaged because of where they live.

Indicators of good respite

The indicators of good respite outlined in Annex A of the document are appropriate. We would like to see the addition of ‘anticipates needs in order to avoid crises’, as an indicator. We would also like to see ‘affordable’ amended to ‘is value for money’, as affordable is a more subjective concept and cost should not be the overriding factor.

Good practice examples

For many people a rolling programme of planned respite provision will be valuable in supporting carers to continue in their caring role. Reliance on private providers in many areas makes this difficult in practice and this should be addressed. We welcome the inclusion of planned respite care bookings but would like this proactive approach made stronger.

Imaginative types of respite care for older people are rare. The guidance document should highlight the importance of equity of provision. It is unacceptable that the quality and variety of services on offer to older people are inferior to services for people with other disabilities and children.

The guidance should encourage authorities to be truly flexible to meet the needs of individuals rather than people having to fit the services that are available.
Overnight respite away from the home is not suitable for everyone. For some people with dementia the experience of being in a different environment is traumatic and they may take time to get over the experience when they return home, making respite less likely in the future.

Overnight respite should be offered in the person’s home if it is more appropriate to their needs. This is not generally available to people with dementia as part of their ongoing package of care. As it is more expensive to provide respite in the home it could be made available for shorter periods of time. For example where respite might have been provided for a week in a care home, 48 hours’ care at home could be provided. Self directed care is a possible means for people to receive respite at home. However, this is not being implemented consistently, there can be too many barriers to negotiate and people with dementia are not being considered in some areas.

Respite needs of specific groups

People with dementia will require a personalised service at all stages of the illness. Dementia is a long term progressive illness, with care needs increasing over time. Respite options should be flexible and adapt to changing needs so they can be an ongoing part of helping people with dementia stay in the community:

• Specialist provision is important at all stages of the illness. Generalist respite may not be appropriate and can have negative impact on the wellbeing of both the person with dementia and the carer, and on the likelihood of using respite again.
• There are approximately 1,350-1,650 younger people with dementia in Scotland. Often younger people with dementia are offered respite in settings designed for the needs of older people. This is inappropriate for younger people’s needs and upsetting for the person with dementia and their families.
• People with dementia need some freedom and independence during respite. A care home setting is too restrictive for people in the early to moderate stages of the illness. Respite should include activities, maintain independence and skills and be an enjoyable experience for the person with dementia.
• People with more advanced dementia and those with what would be considered ‘challenging’ behaviour can be refused respite because their behaviour is too difficult to manage. Respite services may not have the appropriate staff ratios and experience to care for people in the more advanced stages of dementia.

We would be happy to provide further information, or to discuss any of the issues raised in this response.

Kate Fearnley
Health and Community Care Director
16 January 2008