Looking after someone with dementia can be challenging, and there may come a time when you are unable to look after them at home anymore; or it is in everyone’s interests that residential care is considered.
Dementia UK provides specialist dementia nurses, Admiral Nurses, who work alongside families to give the one-to-one support and guidance that helps them face dementia with more confidence. This leaflet draws on their expertise and gives advice on making the decision to look for a care home, and then choosing the right one for the person with dementia and your family.
Types of care homes
The needs of the person with dementia will help influence the type of care home you choose. Care homes are usually categorised into three main types, although some will have a mixed registration, catering to different needs within one setting.
Residential Care Homes provide care for people with a low level of need. Some residential care homes will have a dementia specialism and will be able to care for people with dementia whose needs are less complex.
Nursing Homes provide care for older people with complex physical health care needs.
Nursing Homes with a Dementia Specialism provide care for people with dementia who have complex needs related to their dementia, alongside other possible complex physical health needs.
Each care home, even of the same type, will be different, so preparation and research is important. You could start this by visiting a selection of local care homes and having some questions to hand. Finding a care home that meets all of the needs of the person and their family may not be straightforward – especially if there are financial restraints.
There may be some options of financial support available to you. The specialist nurses on the Admiral Nurse Dementia Helpline can help you explore your financial options and discuss your care needs.
Knowing when the time is right to consider a care home
Making the decision to look for a care home can be a difficult one. Some family carers find they start considering permanent care only after they have become physically unable to look after the person with dementia anymore, perhaps because of their own declining health or a crisis such as the person being hospitalised. The decision can be very emotional, as the carer may feel they are letting the person with dementia down; however, if you are struggling to meet their needs, this may be the best decision for both the person you care for and for you.
If you are unsure whether residential care is right in your situation, it might help to request a local authority social services assessment. See the Assessments section further on in this leaflet for more details on these assessments and how to request them.
There are some issues that frequently come up as reasons for families deciding to investigate long term care. These include:
sleep problems, including broken sleep throughout the night
the person leaving the home alone and having difficulty finding their way back
a breakdown or change in a home support arrangement
incontinence, and/or neglect of personal care such as washing and dressing
increasing frailty, of the person with dementia, and/or the person caring for them
struggles managing multiple health conditions, for the person with dementia, and/or the person caring for them
fears over the person with dementia’s personal safety, or the safety of yourself and others
Supporting a person living with dementia can be emotionally draining and physically exhausting, so it is important to try and recognise when you are beginning to struggle. Looking after yourself is important – you cannot look after anyone else if your own health is suffering.
Although it can be difficult, try not to feel guilty about considering long term care. But do try to involve the person with dementia and any wider family as much as possible, in considering when the time is right.
Capacity to make decisions
There might come a point when a person with dementia no longer has capacity to make decisions for themselves about their care. To have capacity to make a decision, a person must be able to understand the information relevant to the decision, retain the information, use that information as part of their decision making process, and be able to communicate that decision to others.
If possible, it is very important to establish an Advance Care Plan (ACP) and Lasting Power of Attorney (LPA) while the person living with dementia has capacity.
An Advance Care Plan is a document in which the person sets out their wishes for their future medical and personal care, including residential care (please see Sources of support at the end of this leaflet).
There are two types of Lasting Power of Attorney, in which the person with dementia appoints an Attorney to manage their ‘Health and Welfare’ or ‘Property and Financial’ affairs – as and when they no longer have the capacity to do so (please see Sources of Support).
Wherever possible, the person with dementia should be consulted and involved in decisions about their future care. If this is no longer possible, decisions should be made in the person’s best interests, ideally with the agreement of all close family members, and possibly the involvement of the person’s social worker or other involved health professionals.
For more information about capacity and requesting a capacity assessment, please see Dementia UK’s leaflet on capacity (see Sources of support).
Assessments to help identify your needs Local authority social services assessments
If you are unsure whether long term care is right for your situation, it might help to request a local authority social services assessment. This will mean an assessor coming to your home to practically assess what care needs you and the person with dementia have. These assessments may be carried out by your local council or a social worker: this may differ from area to area. Your local authority will be able to advise you on the process in your area. A social worker will not recommend a particular care home to you, but they will give you a list of different homes in your area, for you to research.
It can sometimes be helpful to have an experienced assessor suggest the conversation about a care home, both to the person with dementia and to other family members.
Social and financial assessment
The person with dementia may be eligible for some financial assistance with their care needs. This will be decided as part of the same local authority social service assessment. If possible, the social services assessment should be completed before making enquiries about care home places, as this might influence the care home you choose.
These assessments are routine but can be complicated, particularly the financial aspects, which will take into account all of the person with dementia’s assets and savings. Don’t hesitate to ask the social worker for details about the process and the outcome. They will tell you if the person living with dementia is eligible for any financial help.
The Admiral Nurse Dementia Helpline can help you request the results and, if you disagree with any of their conclusions, possibly help you challenge any of the legal policies used to explain the decision of the assessment.
Choosing the right care home for your family
Choosing the right care home can be challenging. Some might cost more than you can afford. Some might have limited availability of beds, or you might like a home that does not cater for the particular needs of the person you care for. If they have specialist needs, they might be offered a placement in a home that is not close to you, which can be hard if you are trying to visit regularly.
Preparing a personal checklist of your requirements and wishes may be helpful for you to take during visits to potential care homes.
Alongside this, do some research: you will find Care Quality Commission (CQC) reports online for each home in England. In Wales, this is the Care Inspectorate. In Northern Ireland, this is the Regulation and Quality Improvement Authority. In Scotland, this is the Care Inspectorate (see Sources of Support). The ratings systems are different in each country.
These independent care homes regulators visit and rate every care home based on the quality of life of residents and the care delivered. You can ask the care home for a copy of the report when you visit.
Sometimes, the most helpful way to find out about a care home is to talk to residents, relatives and staff. Speak to your friends, family, and other local people to see if they have any recommendations about care homes.
Visit the website www.carehome.co.uk which hosts reviews by families, as well as useful summaries of what facilities each care home provides.
Considering what makes a good care home
Every family’s needs from a care home will be different; but a warm welcome, with residents and staff who seem content and involved with each other, are good indications of a positive environment. Other useful things to consider are:
What is the ‘feel’ of the home?
Use your senses: how does it smell? Is it warm enough? Is it noisy? Do the residents and the staff look happy?
Are there opportunities for the person to continue with their hobbies and interests?
Is there access to books, board games, a radio, a television, puzzles etc.?
Does the quality of the food seem good?
Is there secure access to outside space and fresh air?
Is there regular access to healthcare and wellbeing support, including doctors, dentists, podiatrists and hairdressers?
What are the visiting times? Are they flexible?
How involved can families be? What residents and visitors groups are there?
What are the laundry facilities like? Ask other residents or visiting families about this if you’re not sure how to tell
Are there any special events planned, such as trips out, parties, film nights, themed activities etc.?
Are there links to the local community, for instance, can people get their papers delivered? Go to church? Go to the Post Office?
A compassionate, skilled team with supportive leaders is vital to a good home. Talk to the staff and home manager about how they provide care; what training the staff take; and how they make a difference for the residents. If the manager is new, you could ask about their vision and hopes for the future of the home.
The impact of moving into a care home
Moving into a care home can be a significant change for the person with dementia and for the people around them. Discussing the move throughout the process, with the person with dementia, and with the wider family, can help avoid disagreements in the future.
Moving into a care home can be a distressing experience, but it can also be a positive move, leading to improvements in health and more opportunities for socialising and fun activities, for both the person with dementia and also those who care for them.
Some family carers can experience loss, grief and guilt when the person they have been looking after moves into residential care – particularly if they are a spouse or partner. But the support of the wider family, friends, professionals and the care home itself, can be of great help during this transition (please see Sources of support for the Dementia UK leaflets on Grief and Looking after yourself as a carer).
For the person with dementia, they may feel the loss of attachment to their main carer, as well as of their home and normal routines. There are practical things that can improve the process of moving into a care home, including:
spending some time at the care home prior to moving in
taking in familiar and personal items, such as photographs, paintings from the
walls, favourite ornaments, so that the room looks comfortable and familiar
taking in furniture, with the agreement of the care home
ensuring comfort items are available, such as a person’s slippers, duvet or pillow
How you can help
Once the person has moved into a care home, there are things you can do that may help them settle in, including:
Building positive relationships:
Get to know the staff by name and help them to know you both
Speak to the wider team, including cleaners, gardeners and kitchen staff; everyone can contribute to making a positive difference
Share your essential knowledge about the person with dementia. This will help staff deliver the best care possible. Everything is important: how they take their tea; what their favourite radio station is; what football team they support etc.
Develop and share ‘life story’ work, through photograph albums, life story books, music play lists and storyboards that can be actively used by staff and visiting family and friends to communicate and interact with the person with dementia. Dementia UK has a framework to help you do this (see Sources of Support)
Keep the connection between you and the person with dementia by continuing activities that you have enjoyed together, such as: listening to music, dancing, drinking tea, reading the newspaper, doing a jigsaw puzzle, watching a programme on the television
Work with staff:
Thank staff and tell them when you have seen care that is good, and look for solutions together when care is not as it should be. Ask for regular review meetings to discuss any issues as they arise
Develop your own knowledge about the patterns of work and routines of the home; enquire with staff how you can be involved or support at mealtimes or during group activities etc.
Offer to support staff with activities such as care planning (establishing care in the present), advance care planning (making decisions about future care. See Sources of Support). Keep talking and share ideas to improve care
Think about joining the home’s relatives and residents’ group to support the care home