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The place of care

There are many different care and support options available for people living with dementia. Sometimes we face difficult choices around whether we can continue to support the person living with dementia at home and how we might do this, or if a care placement would best meet everyone’s needs as the condition progresses.

We look at some of the commonly available options in the UK. These will be appropriate for different people at different times.

Things may be different where you live – you might like to share how things are where you live, by adding a comment or replying to someone else.

Staying at home

Understandably, many people want to stay in their own home for as long as possible. In the early stages of dementia, the person is often able to look after themselves with no major safety concerns.

As dementia progresses, family members and friends often provide support such as shopping, laundry, cleaning the house and managing finances. Technologies are also available which can help support people to live at home and minimise safety risks, such as falls and accidents.

We will give you more information on technology and support, in Week 3 step 3.10. You might find our sister course Ageing Well: Falls useful.

While living at home, some people may need additional support. A range of services and support are available and your GP or social worker will be able to guide you. Some options include day centres, which the person can go to for company, activities and meals; and carers who come to the persons home to provide support with things like personal hygiene, eating, medication and checking that the person is safe. United Kingdom Homecare Association Ltd can help you to find a local care provider in the UK.

Some organisations, such as the Alzheimer’s Society, also offer drop in activities for people living with dementia, and their families. They can provide information and support, to help the person living with dementia to stay at home as long as they are able. As dementia advances towards end of life, additional palliative nursing support can be provided, in the UK, by a range of specialist services such as Macmillan and district nursing teams. Support for you is also available. We talk about this more in Week 3.

Living with family

People living with dementia who need extra support or who feel uncomfortable living at home (particularly if they normally live alone) may move into a family member’s house. This can enable the family to provide additional support and give peace of mind that the person is in a safe environment. However, this option is not always practical or possible.

Extra care housing

Extra care housing offers people the opportunity to live independently in their own flat or apartment, but with care staff on site to provide support. Extra care housing providers and schemes offer different facilities, so it is worth looking into these in more detail. Talking to the manager and other professionals might help you to decide whether this option would be able to meet the needs of the person living with dementia.

Residential and nursing care homes

Residential care homes provide accommodation, food, activities, and support with personal care. They do not normally have trained nursing staff working directly in the home so they cannot always meet the needs of people who require nursing input. Support is provided by district nurses who would provide any nursing care identified by the home and GP as would be provided in someone’s own home.

Nursing care homes provide similar care to residential care, but have trained nursing staff available to provide nursing care as necessary.

Different care homes will offer different levels of care and services. Some care homes are dual registered, which means they may offer both residential and nursing care. Care homes may also offer respite services, which allow short stays in care. This may enable the person with dementia to remain at home and support carers to take a break from caring.

Some care homes provide care to older people with a range of needs and conditions, and some specialise in dementia care. Seeking advice from your social worker or other healthcare professional and information from the regulatory organisations for care homes may help you with your decisions. The regulatory organisations in the UK are:

Other countries may have their own regulatory organisations.

Care homes are generally able to provide appropriate support and care to people living with dementia, but it is always important to discuss the needs of the person living with dementia with the care home in advance. This will help to ensure that they are able to meet the person’s current needs and consider how they would meet changing needs as the illness progresses.

Hospice care

For some people living with dementia, the most appropriate place of care as they approach the end of life is a hospice. Although this is an option, currently few people with dementia are cared for at end of life in hospice and more often people will stay in their own home, or in a care home. Hospice support for people living with dementia can be provided through day hospices and in the person’s own home, and it may be possible to discuss the option of a bed in a hospice if and when this is appropriate. In the UK, hospice care is provided by a range of national and local organisations: Macmillan Nurses and Marie Curie are well known, although many people are not aware that they can provide help and support for people with dementia. Talking to your GP about options for hospice care may be helpful. Hospice UK can also help you to find local hospice care.

Talking about options in advance

There is no perfect solution to providing care and it is important that you do whatever is right at the time for both you and the person you support. Talking about a range of care options in advance can help you to prepare for making these decisions. Sometimes things can change quickly and unexpectedly, so it can be helpful to plan ahead so that you are prepared for changes. This may mean that the person you support has to change the place that they are receiving care. It may be a daunting prospect, but looking into what care services are available in your local area can help you be prepared if the person you support requires a change in their place of care.

Involving others in discussions about place of care may also help you to think about different pros and cons and give a fresh perspective. This may be other family, a healthcare professionals or someone else you trust.

Please remember that although this course has been designed and developed by healthcare professionals, carers and families of people with dementia, we cannot give you advice about your own situation here. You should seek help from your local carers and healthcare workers.

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This article is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University