We know that when you’re caring for someone with dementia, life can feel overwhelming. Our dementia specialist Admiral Nurses provide life-changing care for families facing all forms of dementia. When people are struggling, our nurses help them take back control.
Restlessness and dementia
Restlessness can present as someone pacing, fidgeting, or trying to leave the house. When someone with dementia is restless, it might be that they have an unmet need that they are trying to communicate. They might:
be in pain. Do they have arthritis, or joint pain?
have an infection or constipation. Are they in discomfort when using the toilet? Have they become incontinent? Are they going to the toilet more frequently?
be bored. Do they want or need stimulation? Have they been inside all day?
be anxious. People with dementia may experience anxiety if they feel they are in unfamiliar surroundings – even if they are not
need to go to the toilet
Often, if someone with dementia gets up and starts pacing, there is a
reason for it – but they might not remember or be able to communicate what that reason is. You could ask them if they need the toilet, or if they would like to go for a walk.
Spending a lot of time inside, sitting down, can be unsettling for anyone. So if they want to walk about, it is fine to let them do so, as long as they are not in any danger and it is not causing them distress.
Wanting to leave the house
Some people with dementia might struggle to recognise where they are as ‘home’. This might be because they have become disorientated. This confusion can become worse at dusk, known as ‘Sundowning’. This can also be because they are thinking about somewhere they lived in the past.
The carers we work with have had some success with the following methods. These can help the person with dementia feel more at ease, which might make them less inclined to want to leave the house.
putting coats and shopping bags away in cupboards, rather than keeping them near the front door. Some people with dementia find these items trigger their desire to leave; seeing them makes them feel as though they were about to go out
hanging a curtain rail above the front door and pulling the curtain when appropriate. Hiding the door can stop someone with dementia wanting to open it
involving the person in household tasks. What did they like to do before their diagnosis? Asking them to help you with jobs such as folding washing or laying a table can help them feel included. Thanking the person for their help can help them feel appreciated and needed, which might help them to feel calmer and reduce their desire to leave
asking the person about the place they want to go to and listening carefully to what they say. Speaking to them about previous homes and the memories they made there can help them to feel reassured
Assistive technology such as tracking devices, alarms and monitors can be very useful to help you know where the person is around the house. This means that you do not need to follow them to see what they are doing, as this can sometimes cause the person more anxiety.
Your local social services can provide you with information about what assistive technology is available in your area, and any funding you might be eligible for.
You can put locks on the doors and the windows, but do carefully consider this, as trying to open locked doors and windows can be distressing for a person with dementia.
What to do if the person leaves the house
Occasionally, the person might leave the house, and it’s important that you have a plan in place for if and when this happens:
Talk to your neighbours; explain the situation and make sure you have their contact details and they have yours
Make sure the person with dementia always has their name and your contact details on them. Sew these details into their clothes, or encourage them to wear identification jewellery, such as a bracelet or necklace
Phone the police. A national scheme called the Herbert Protocol is in place to help the police find missing, vulnerable people. There is a form to fill in (in advance) with details about you and the person with dementia, which you can find here.
Sources of support
If you have any further questions about helping a person with dementia who is restless, or the Herbert Protocol, or any other aspect of caring for someone with dementia, please call the specialist dementia nurses on the Admiral Nurse Dementia Helpline, open Monday to Friday, 9am-9pm, and 9am-5pm at weekends, on 0800 888 6678 or firstname.lastname@example.org.