Making arrangements for respite care

If you have no experience of respite, it can feel difficult to know where to turn for help. 

It can be helpful to think of this as a series of steps, taking each one in turn:

• Involve the person with dementia
• Request a care needs assessment for the person with dementia
• Request a carer’s assessment for yourself
• Understand funding
• Decide on the right type of respite care
• Research the service
• Getting started.

Involve the person with dementia

As the person with dementia will be the one using the respite service, they need to be involved. If they have mental capacity , it is their decision whether they use a respite service or enter residential respite. If they don’t have the mental capacity to decide, a best-interest decision can be made on their behalf. 

The following may help when discussing respite care with the person with dementia:

• Focus on the benefits that a break can bring you both. For example, you could say ‘If you attend daycare, you can socialise and try something new while I do chores at home. We can then focus on spending time together the rest of the week without me worrying about housework.’
• Be clear about the need for some support or a break. Try not to highlight all the things you do to care for them. This may make them feel guilty or blamed. Discuss together what the right length of time for a break should be.
• Talk through which options would and would not be acceptable to them and help them feel in control. For example, you could say, ‘Would you be willing to try day care or would you prefer someone staying at home with you? If you aren’t comfortable after a few weeks, we could stop and try something different.’
• If they are resistant to the idea of respite care, ask what their concerns are. They may feel worried about something that you could reassure them about. For example, if they are worried about missing a part of their routine, such as going to their regular place of worship or a social group, you can tailor the respite to avoid those times.
• If they are still resistant, revisit the conversation another time. Try to find a time to do this that is best for the person. For example, if they experience ‘sundowning’  later in the day (which can increase confusion), have the conversation in the morning. If the person is more likely to respond to a professional or family member, you could ask them to discuss it with the person instead.
   

Request a care needs assessment for the person with dementia

Anyone with dementia can have an assessment of their needs by the local authority. This is called a care needs assessment.

A care needs assessment should identify what the person’s needs are – even if they are currently being met. It should also include what support is needed. It helps the local authority decide if it will pay towards meeting these needs. 

Make it clear which of the person’s needs you are currently meeting. Think about what you’re happy to continue with and what you would like some help with. If you are happy to continue but need respite to help you take some time out from your caring role, let the assessor know.

The local authority cannot refuse to carry out an assessment, even if they think the person will have to pay for their own support and care. If the local authority does not pay towards the care and support, the information in the assessment can still be helpful. You can use it to discuss care and support needs with respite providers. 

Request a carer’s assessment for yourself 

Anyone who cares for a person with dementia is entitled to an assessment of their needs as a carer. This is carried out by the local authority and is called a carer’s assessment.

A carer’s assessment should identify what your needs are and what type of support would help you. Let the assessor know what you want to continue doing.

For example, sport or hobbies. Ask whether anything is available to support you with that.

A carer’s assessment is often carried out at the same time as a care needs assessment for the person with dementia. This can be helpful as your needs could be met by support given to the person you care for.

For example, if you wish to travel abroad for a family or work commitment, the local authority may provide respite for this period.

You can ask for a carer’s assessment at another time if you want to. You may feel you could be more open about your feelings and needs if the person you care for is not at the assessment. Speak to the local authority to arrange this.

Understand respite care funding

To understand your respite options, you need to know if you can access funding through the local authority. Finding out about funding can seem complicated as there are a few steps involved.

The purpose of respite is usually to give the carer a break. However, respite may be put in place after one of the following: 

• a care needs assessment for the person with dementia
• a carer’s assessment for the carer. 

Even if the person with dementia is assessed as having no eligible care needs, respite can still be provided following the carer’s assessment.

Local authorities may choose not to charge for all types of respite. If the care does need to be paid for, it is always the person with dementia who will have their finances assessed. 

A carer must not be charged for respite costs. This is still the case even if the respite is for the benefit of the carer. This is because it is the person with dementia who will be receiving the respite service. 

If the person with dementia needs to pay the total cost, they are known as a ‘self-funder’. As they are paying for all their care, they can choose the provider that suits them best, with what they want to spend. 

The local authority is under no duty to meet the needs of self-funders. But if you ask them to, they can. Be aware, they can charge an arrangement fee to do this. 

If the person can receive some support with funding, there may be limited choice because of the available budget. If you have a service or home in mind, the local authority may not fund it if a cheaper option can meet their needs. Ask which options are within budget.

If a person with dementia does get funding from the local authority, they may decide to receive it as a ‘direct payment’. A direct payment gives people greater choice over how they spend the money to meet their needs.

A direct payment can be used for the following examples of respite:

• employing a personal assistant and taking a holiday with a carer
• paying for respite care in a care home (for up to four weeks in any 12-month period)
• paying for a supported holiday.

Direct payments can’t usually be made to pay close relatives for care if they live in the same house as the person. But local authorities can make exceptions for this. 

Decide on the right type of respite care

It can feel daunting to find the right care option for the person with dementia and also for your needs. 

The local authority assessment will be useful when you talk with providers about the care the person requires. 

The provider should also assess if they can meet the person’s needs. They should consider their current staffing levels and other service users.

When considering your options, it can help to think through the following questions:
 

Research the service

Social care workers can support and give you options. However, they usually won’t recommend a particular service. This is because everyone’s needs and preferences vary. 

For example, a day centre that provides lots of opportunity for physical activity may suit one person, but not another. Instead, you could:

• attend a local group for people with dementia or carers and see if there are any word-of-mouth recommendations. You can search our Dementia Directory  for services in your area.
• read Care Quality Commission (CQC) inspection reports and quality ratings on their websites
• ask friends and family who have had similar experiences
• read online reviews.

Remember, services can also improve and change since their last inspection or review.

It’s a good idea to meet with care providers to find out more about how they work and how you feel about them. 
 

Getting started

Change can be difficult. If you have been providing all of the person’s care, any outside help may feel like a big step for you both. It may be difficult for you to trust others to provide the care, and for the person you care for to accept help.

Starting with something short or short-term may be helpful. Then perhaps work up to something longer or more frequent. There may be some trial and error in finding what works well for you both.

Respite is something you may feel you want to put off. However, it can be beneficial for you both in the long term, especially if respite becomes necessary rather than optional. For instance, if you need an operation and can’t provide care for some time, it’s best to think about possible challenges and solutions. Try to focus on the positives a successful respite arrangement can bring.