Finding support shouldn’t have to be this hard – Helen’s story
Helen shares her family’s experiences of trying to navigate the fragmented health and social care system after her mum was diagnosed with Alzheimer’s disease.
If you care for someone with dementia, there may come a point when you are unable to look after them at home anymore, or when moving into a care home is in their best interests. Here’s what you need to know about making this difficult decision.
Types of care home
There are two main types of care home:
- Residential care homes provide accommodation and personal care such as help with washing, dressing, giving medication, using the toilet and taking part in activities. Some specialise in dementia
- Nursing homes also provide personal care, but have qualified nursing staff who can support people with more complex physical or mental health needs or learning disabilities
Some homes offer both residential and nursing care. The needs of the person with dementia will influence the type of care home you choose.
When might you consider a care home?
Reasons for considering residential care might include:
- sleep problems in the person with dementia
- the person leaving home alone and/or getting lost outside the home
- a breakdown in a home care arrangement
- difficulties managing personal care such as washing, dressing and continence
- frailty in the person with dementia and/or those caring for them
- difficulty managing multiple health conditions in the person with dementia and/or those caring for them
- worries about the person’s safety, or the safety of yourself and others
- the person rejecting help from you and other carers
- the person finding it increasingly difficult to cope with daily living, eg neglecting their home and/or themselves
- the person feeling anxious and unsettled in their own home and/or not recognising that they are at home
Making a decision about moving into a care home
When considering a move into a care home, try to involve the person with dementia, as far as possible, and other family members. Our dementia specialist Admiral Nurses can also offer advice: please see Sources of support for contact details.
Many people with dementia will eventually lose the mental capacity to make their own decisions about their care. For this reason, it is best to make plans for their future as early as possible so they can share their opinions and preferences in advance.
These plans should include:
An advance care plan (ACP): a document that sets out the person’s wishes for their future medical and personal care, including residential care.
Lasting power of attorney (LPA): a legal process where a person appoints someone trusted to make decisions on their behalf if they lack capacity. There are two types: health and welfare; and property and financial affairs.
If the person lacks capacity and does not have an ACP or LPA, you may need to make a decision about whether they should move into a care home on their behalf, in their best interests. You should involve other family members, especially those with caring responsibilities, as well as professionals involved in the person’s care.
Assessments of care needs
There are certain assessments that can establish the care needs of the person with dementia and their eligibility for financial support.
Needs assessment: a Social Services assessment to identify the person’s support needs and make recommendations for their care, which may include moving into a care home. The assessor will not recommend a particular care home but can provide a list of options locally.
Financial assessment: a review of the person’s finances to establish whether they qualify for financial support with their care. If possible, this should take place before you start looking for care homes, as it might influence your decision – for example, some may be over your budget.
NHS continuing healthcare funding (CHC) assessment: an assessment of eligibility for care funding for adults with long-term, complex health needs, which may include dementia. Normal NHS healthcare – for example, from a GP, district nurse or in hospital – is free, but CHC covers other care costs, such as home carers or care home fees.
Applying for CHC can be stressful, so it is highly recommended that you have support from a dementia specialist. Our Helpline can advise you if there is an Admiral Nurse or other support service in your area that could help.
Choosing the right care home for a person with dementia
Choosing a care home can be challenging. Some might be too expensive, full, or unable to cater for the person’s individual needs. In some cases, there may not be a suitable care home in your area, and the person might be offered a placement that is some distance from you.
Finding a suitable care home for a person with young onset dementia (where symptoms develop before the age of 65) can be particularly difficult. Many are tailored to older people and cannot support the different needs of a younger person. You may like to read our information and advice on choosing a care home for a person with young onset dementia.
All care homes are inspected and rated by independent regulators:
- the Care Quality Commission (CQC) in England
- the Care Inspectorate in Wales
- the Regulation and Quality Improvement Authority (RQIA) in Northern Ireland
- the Care Inspectorate in Scotland
You can find inspection reports online or ask the care home directly.
When you are looking at care homes, preparing a checklist of your requirements and wishes may be helpful. You can also ask friends, family, and other local people – such as members of carers’ support groups – if they have any recommendations.
When visiting care homes, look for a warm welcome and a homely atmosphere. Use your senses – how does it smell? Is it warm enough? If possible, talk to the other residents, relatives and staff about their experiences of the home.
Other questions to consider are:
- Do staff have specific dementia training?
- Does the care home tailor activities to residents’ individual interests?
- Are residents involved in the home’s daily activities and routines, eg helping to prepare food, lay tables, do gardening?
- Is there access to books, board games, radio, TV, puzzles, a piano etc?
- What is the food like? Can they cater for special diets?
- Is there secure access to outside space?
- Is there a choice of communal areas – eg a quiet space to sit and rest, and a livelier area for activities?
- Is there regular access to healthcare and wellbeing support, including doctors, dentists, podiatrists and hairdressers?
- What is the staff turnover rate?
- What are the visiting times? Are they flexible?
- Can you have a meal with the person with dementia by prior arrangement?
- How accessible is the home for the people who are most likely to visit?
- How are residents and their families involved in care decisions?
- How are residents with communication difficulties supported?
- What are the laundry arrangements?
- Does the home arrange special events such as daytrips, visits from local nurseries, parties, film nights, themed activities etc?
- Are there links to the local community – eg can residents get their newspapers delivered? Go to a place of worship? Go to the Post Office?
- Can transport be provided for visitors who cannot drive or use public transport?
- How can you communicate with staff if you have questions, concerns or recommendations?
- How will staff support you and the person with dementia as they approach the end of life?
Moving into a care home is a major transition. The person with dementia may feel the loss of their independence, home, attachment to their main carer and normal routines. But although the move can be distressing, it will often lead to improvements in health and quality of life, and more opportunities for socialising and meaningful activities.
To ease the process, find out if the person could have an overnight or short respite stay prior to moving in. Make sure they have comforting and familiar items around them, such as their own bedding, photos and ornaments. They may even be able to take in their favourite chair or other small pieces of furniture.
Helping the person with dementia settle into their care home
You can play an important part in helping the person settle into the care home and have a positive experience of living there.
- Try to think of the care home as an ‘extended family’; get to know the staff by name, including the wider team, eg cleaners, gardeners and kitchen staff
- Share your essential knowledge about the person with dementia to help staff support them – even small details are important, eg how they take their tea, their favourite radio station, what sports team they support. You could do this by creating and sharing the person’s life story – a record of their past and present life, likes, dislikes, values etc
- Be clear with staff about the person’s needs and how their dementia affects them, eg what gives them comfort if they are distressed
- Thank staff when you see good examples of care – you can also tell the manager, as this feedback can be useful in staff members’ appraisals
- Ask for regular review meetings and look for solutions together if issues arise
- Get to know the home’s routines – for example, find out about the best time to visit, whether you could offer support at mealtimes, if you can be involved in group activities etc
- Ask to be involved with the person’s care planning
- Make sure you still spend quality time with the person doing meaningful activities that you both enjoy – like listening to music, dancing, sharing tea and cake, reading the newspaper, doing a jigsaw, watching a film
- Consider if you could offer support with activities – for example, if you play an instrument, could you lead a music session? If you enjoy gardening, could you start a residents’ gardening group?
- Think about joining the home’s relatives’ and residents’ group to support the care home more generally
Your emotions
When someone you care for moves into a care home, it is natural to feel mixed emotions, including feelings of guilt, grief, loneliness, relief and a sense of freedom. You may also worry that family, friends and professionals will judge you for not being able to continue in your caring role.
However, moving the person into residential care is often a positive step, allowing them to receive expert, specialist care and relieving you of some of the physical and mental strain. And when you are no longer absorbed in the daily duties of caring, you can focus on enjoying the time you spend together.
To speak to a dementia specialist Admiral Nurse about transition to a care home or any other aspect of dementia, please call our free Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org.
Alternatively you can book a phone or video appointment in our virtual clinic.
Dementia UK resources
Choosing a care home for a person with young onset dementia
Guide to NHS continuing healthcare funding
Looking after yourself as a carer
Mental capacity and decision-making
Other resources
carehome.co.uk – care home reviews
Financial assessments for social care
Make, register or amend a lasting power of attorney
My Home Life – supporting quality of life in care homes
Book an appointment with an Admiral Nurse
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.
