Finding purpose in grief – Helen’s story
Helen reflects on her dementia journey and grief after husband Clive died from frontotemporal dementia in 1999.
Many people with dementia experience periods of restlessness. We explain why this might happen and how you can help.
Restlessness – including fidgeting, pacing and trying to leave the home – is common in people with dementia.
It can be upsetting for the person, especially if they are prevented from moving around, and for family members, who may in particular worry about the person’s safety.
Causes of restlessness in a person with dementia may include:
- hunger or thirst
- being too hot or cold
- pain, eg from arthritis, infections like urinary tract infections (UTIs), constipation or dental problems
- needing the toilet
- boredom
- needing to stretch their legs
- being in unfamiliar surroundings or with unfamiliar people
- feeling anxious, stressed or depressed
- distress caused by something in their environment, eg noise from roadworks or a strong cooking smell
- Offer a drink and something to eat
- Ask if they need the toilet – or look for non-verbal signs like holding their stomach or crotch – and offer support if they need it
- Ensure they take any medication they are prescribed
- If they appear to be in pain, anxious or depressed, make an appointment with their GP
- Try to engage them in activities that provide enjoyment and a sense of purpose, like walking, gardening, crafts or puzzles
- Help them have a change of scene, even if you just go into another room or the garden
- If you are in unfamiliar surroundings, try to return to a place where they feel comfortable. If this isn’t possible, see if they can move to a calm, quiet space – eg a spare room in a house you are visiting
- Sitting close, holding their hand or stroking their arm can provide reassurance. A gentle hand massage can also be soothing
- Play music, read aloud, watch a film together or look at photos
- Give them something comforting to hold, like a cuddly toy or soft blanket
Sometimes, the person with dementia may get up and start pacing, which can be frustrating and upsetting for you both.
To support a person who is pacing:
- allow them to walk about, if it’s safe to do so: you may need to walk together to protect them
- safety-proof their home to reduce the risk of falls and accidents
- try to establish whether there is an unmet need that you could help with – for instance, they may have stood up to go to the toilet but have forgotten what they were doing
- if the person is in hospital or a care home, tell staff that they like to move around so they can be supported to do so safely
A particular worry for many families is when the person with dementia wants to leave their home. This may happen if:
- they are unaware of the risks of going out alone
- they are confused about where they are in time – for example, if they are retired but still think they need to go to work
- they are thinking about somewhere they used to live
- they experience ‘sundowning’ – a strong sense of being in the wrong place or needing to go home, even if they are at home, that typically becomes worse at dusk
The following methods may help if the person with dementia is prone to trying to leave the house.
- Keep coats and bags in cupboards, rather than near the front door – seeing these items might make the person think they were about to go out
- Hang a curtain rail above the front door and pull the curtain to conceal the door in the evenings, or at times when they often try to leave their home
- Involve the person in meaningful household tasks like preparing meals or gardening
- Ask the person about the place they want to go to – speaking about their memories of special places can help to reduce agitation
- Give them opportunities to leave the house safely, with you or another family member or friend for support
- You can lock doors and windows, but bear in mind that trying to open locked doors and windows may cause the person distress
- Consider using assistive technology like tracking devices, door alarms and personal fall alarms to give you peace of mind
It’s important to make a plan in case the person with dementia succeeds in leaving their home alone. For example:
- Talk to your neighbours about the situation, and exchange contact details
- Make sure the person always has their name and your contact details on them – you could sew an identity card into their coat or bag, or buy them an identity bracelet or necklace
- Complete a Herbert Protocol form – you can list information such as the person’s name and address, a physical description, health issues, communication difficulties, and significant places that they may try to visit. You should fill in the form in advance and, if the person goes missing, hand it to the police to assist in their search
To speak to a dementia specialist Admiral Nurse about restlessness or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), email helpline@dementiauk.org or you can also pre-book a phone or video appointment with an Admiral Nurse at a time to suit you.
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.
