You are not on your own
If you help someone with dementia with daily life, you are a carer, even if you think of yourself simply as a husband, daughter, friend or neighbour. Recognising this can open the door to support.
The NHS says your needs as a carer are as important as the needs of the person you care for. NICE says carers should be offered support and training, including information about dementia, communication skills and looking after their own health.
Communication tips
Dementia can make it harder to find words, follow conversations and understand what others mean. The NHS suggests the following.
When you are speaking
- speak clearly and calmly, using short sentences
- give the person time to respond, as it may take longer to process what you said
- offer simple choices, such as “tea or coffee?”, rather than open questions
- turn off the TV or radio to reduce background noise
- stay patient and friendly
Body language
- sit or stand at the same level as the person, not over them
- make eye contact
- use gestures and facial expressions to help
- gentle touch, such as holding a hand, can reassure, if the person is comfortable with it
Listening
- stop what you are doing and give your full attention
- try not to interrupt or finish sentences, even if you think you know what they will say
- check you have understood, rather than assuming
- respond to the feelings behind the words
It is usually more helpful to go along with the person’s reality than to correct them. For example, if they ask for a parent who has died, talk about that parent rather than repeating distressing news.
Changes in behaviour
The NHS says behaviour changes are common as dementia progresses. They may include:
- asking the same question again and again
- restlessness, pacing or walking about
- waking at night
- following you around
- agitation, shouting or aggression
- seeing things that are not there
Look for a cause
The NHS says these behaviours often come from fear, confusion or feeling unsafe. A sudden change may be caused by:
- pain
- an infection, such as a urinary tract infection
- constipation
- depression
- side effects of medicines
Practical ideas
| Behaviour | Things that may help |
|---|---|
| Repeated questions | Stay patient. Answer calmly, or write the answer on a note or whiteboard. Look for a worry behind the question |
| Restlessness | Check they are not hungry, thirsty, in pain or needing the toilet. Offer a walk or something to do with their hands |
| Night-time waking | More daylight and activity in the day. A comfortable bedroom. Less caffeine later in the day |
| Following you | Include them in what you are doing. Reassure them they are safe |
| Aggression | Stay calm. Do not argue. Give space if it is safe. Talk to the GP |
The NHS says antipsychotic medicines are sometimes used short term for severe aggression. NICE says they should only be used in specific situations, with regular review. People with dementia with Lewy bodies need extra caution. See treatment.
Everyday care
- Independence: encourage the person to do what they can, even if it takes longer. The NHS suggests involving them in everyday tasks such as shopping or gardening.
- Eating and drinking: the NHS says dehydration raises the risk of infections and confusion. Offer drinks often and try finger foods if cutlery becomes hard.
- Toilet problems: the NHS suggests a sign on the toilet door, a regular routine, and asking the GP about a continence adviser.
Carer’s assessment
Anyone over 18 who regularly helps someone can ask their local council for a carer’s assessment. The NHS says it is free.
The assessment looks at how caring affects your health, work, free time and relationships. If you are eligible, the council may help with things like:
- someone to take over caring so you can have a break
- help with transport or household tasks
- training, such as how to lift safely
- putting you in touch with local support groups
NICE says carers should be told about their right to a carer’s assessment, and to an assessment for respite care. You can also ask for a needs assessment for the person you care for.
Taking breaks
Regular breaks help carers keep going. In Carers UK’s survey, 57% of carers said they often or always feel overwhelmed, and 65% of those said it was because they could not take time away from caring.
The NHS lists options such as:
- day centres
- respite care at home, where a paid carer stays with the person
- short stays in a care home
- family and friends taking turns
Admiral Nurses
Admiral Nurses are specialist dementia nurses. Dementia UK says they give free, expert advice and support to families, including practical caring tips, help with distress and changes in behaviour, and planning ahead.
You can speak to an Admiral Nurse on Dementia UK’s free helpline, 0800 888 6678, or book a virtual clinic appointment. Some areas also have local Admiral Nurse services. See support and helplines.
When care needs change
Over time, the person will need more help. Signs that the current plan may not be enough include:
- you are exhausted or your own health is suffering
- the person is not safe alone
- care is needed through the night
- the person needs more help than you can give
Talk to the GP and ask the council for a review of the person’s needs. Options may include more care at home, day services, or a move to a care home.
Dementia UK stresses that moving someone to a care home is not a failure. It can mean they get specialist support, and it can give you back time to focus on your relationship with them.
For funding, see legal and money matters. Some people with complex health needs qualify for NHS continuing healthcare, which is based on assessed needs, not on diagnosis alone.
End of life
Dementia is a life-limiting illness. Planning ahead can help the person’s wishes be respected.
The NHS explains:
- an advance statement records wishes and preferences, such as where the person would like to be cared for
- an advance decision is a legally binding refusal of specific treatments, if it meets certain conditions
- palliative care focuses on comfort, managing pain and other symptoms
- care may be at home, in a care home, a hospice or a hospital
- NHS continuing healthcare has a fast-track route for people whose health is deteriorating quickly towards the end of life
Ask the GP about palliative care support and local hospice services. Dementia UK also has information about end-of-life care.
Look after yourself too
Caring can take a heavy toll on your own mental health. Tell your GP you are a carer, and ask for help early.
Read more about carers’ wellbeing, including stress, guilt and grief.