Coronavirus and dementia
Information for friends and family caring for someone with dementia.
General Information about risks for people with dementia
Visit www.gov.uk/coronavirus for detailed information on social distancing, social isolation and shielding.
The government has sent out a very clear message for people to ‘Stay at home’ – whilst this will make life more difficult for most people, for people with dementia there are additional risks and challenges due to;
- lack of ability to understand the risks associated with being outside and mixing with others (shield themselves)
- lack of usual local community support such as meeting with friends/clubs leading to a breakdown in essential routines that maintain the person’s ability to live their lives
- inability to isolate themselves should they contract the virus, with associated restrictions being imposed but not understood (possible escalation of distress)
- getting isolated or lost as usual points of reference within communities change
- the pressure this places on family and friends which may impact on their own mental health and their ability to continue to care
Managing Social Isolation when you live with the person you care for
Essentials: If you have family/friends who live locally arrange with them to deliver essential supplies, food and medicines. If family are unable to help or you do not have local support then help can be organised via Gloucestershire Community Help Hub (see useful contacts for details)
Staying connected: Being at home all the time and not being able to have visitors can feel isolating and at times distressing. Try to;
- stay in touch with family/friends by telephone or video calling
- keep to your usual routines at home
- keep as active as possible- follow some of the TV exercise opportunities
See Useful Contacts for details of organisations that can offer support to help reduce social isolation.
When the person you care for does not understand the risks associated with going out and about
- Repeat the message as often as you can, use written prompts. If you have access to the internet print off posters (see link in useful contacts) or make your own ‘Do not go out – you could catch flu’ notice and stick on the inside of the front door. Notices about frequent handwashing can also be put in the bathroom.
- If the person you care for is showing symptoms of Covid 19 (high temperature, dry cough) and they do not have capacity to make decisions relating to being isolated due to the virus, then you should make contact with a health professional to outline and agree what measures to take to keep the person at home. In the first instance check their symptoms online at www.111.nhs.uk/covid-19 or if you cannot get online, telephone 111, you can also call Managing Memory Together 0800 694 8800 (Mon-Fri 9am-5pm) for advice.
- An example of the sort of measures you could take are that you could lock the doors –and take measures to ensure the person does not leave the house. You must discuss this with a health professional to agree if this would be in the person’s best interests and the best option to take. Contact Managing Memory Together 0800 694 8800 (Mon-Fri 9am-5pm)
Managing Social Isolation – when you support someone who lives alone
With restrictions on travel and not being able to visit supporting someone you care about who has dementia from a distance has additional challenges.
Essentials: You may already have a system in place for the delivery of essentials such as food and medication. If for some reason these are unable to continue, or this kind of support is not in place, help can be organised via Gloucestershire Community Help Hub (see useful contacts for details)
Staying connected: Being at home all the time and not being able to have visitors can become quite boring and isolating. Try to;
- Stay in touch by telephone/video calling – whatever your usual method is of keeping in touch.
- Encourage the person to keep to their usual routines at home
- Encourage them to keep as active as possible
- Arrange for an agency such as Alzheimer’s Society or Age UK to make staying in touch calls.
See Useful Contacts for details of organisations that can offer support to help reduce social isolation.
When the person you care for does not understand the risks associated with going out and about:
Download information and posters from the government website that might help the person to understand the rules relating to social isolation and the need for frequent handwashing etc. (See useful contacts for details) Managing Memory Together can also help with this.
In order to support your family member/friend to self-isolate in their home (without suspected Covid 19) you may with their permission involve local support services such as Gloucestershire Community Help Hub, Community Police and services such as Telecare and Adult Social Care. Dementia services such as Managing Memory Together provided by Gloucestershire Health and Care NHS Foundation Trust can also offer help and support to do this. This can be done in the person’s best interests if the person does not have capacity to make decisions relating to shielding/isolating. If you have concerns that your family member/friend is still going out and about it would be advisable to contact Managing Memory Together 0800 69 8800 firstname.lastname@example.org to develop a plan in the person’s best interests to support them to stay at home and self-isolate.
Managing your own wellbeing as a carer
- Understand about the virus, how to stay safe at home and what to do if you think you or the person you care for has symptoms (check they symptoms online at https://111.nhs.uk/covid-19 or if you cannot get online, telephone 111.
- Whilst it is important to keep in touch with how things are developing, try not to read or watch too many programmes about the virus as this may make you feel more anxious and worried.
- Use music, old TV programmes, films, puzzles, old photographs etc to keep you and the person you care for occupied. If you use the internet, you can get more ideas from the Alzheimer’s Society website. You can also telephone Managing Memory Together for information and advice about activities.
- Try to get some exercise – walking around the garden, dancing to music or seated exercise. Look out for radio and TV programmes aimed at keeping older people healthy and active during the Coronavirus lockdown.
- Join in the online training and events offered by Gloucestershire Carers Hub if you can. You can also ring them for telephone support.
- Try to find time for yourself to relax – not always easy, but will make a real difference if you can.
- Visit the NHS site, Every Mind Matters for information on keeping mentally well and managing stress and anxiety.
Dealing with changes in the person you care for and knowing where to get help
Whilst it is important to stay at home and monitor for any signs of Coronavirus, you may also become aware of changes in person you care for, also you yourself may become unwell and not be able to continue to care. The following guidance may be helpful in dealing with changes in the person you care for and knowing where to go to get help.
Assess the situation
Has there been a rapid change in the person?
Rapid changes usually indicate that the person has an infection or is in pain so you should make an appointment with the GP as soon as possible. If you feel you need advice in the meantime, you can call Managing Memory Together during office
hours 9am-5pm Monday to Friday or out of hours call NHS 111.
If you or the person you care for is at risk you should seek medical help immediately by calling 999.
- Have you noticed a gradual deterioration in the person’s ability to manage everyday tasks?
- Are they becoming much more confused?
- Is the person having hallucinations either for the first time or more frequently?
Dementia is progressive which means that the person’s condition will get worse. However it is still important to seek help and advice if you are concerned.
You can call Managing Memory Together 0800 694 8800 for advice.
When you call for help explain
- Why you are worried?
- What has changed?
- What help you think you or the person you care for needs.
Sometimes (unless it is an emergency) it helps to write things down before you call.
- National Dementia Helpline (Alzheimer’s Society) 0300 222 11 22 Mon- Wed 9am-8pm, Thurs & Fri 9am-5pm, Saturday & Sunday 10am-4pm
- Dementia UK Helpline 0800 888 66 78 or email email@example.com Mon to Fri 9am to 9pm Sat & Sun 9am to 5pm
- Samaritans: Call 116 123 or email firstname.lastname@example.org Open 24 hours, 365 days a year
- Mind: Call 0300 123 3393, email email@example.com or text 86463
- Dementia Talking Point – an online community for people with dementia, their family, friends and carers. It’s a safe place to ask questions, share your experiences and get advice and support.
Useful contacts and information
Covid 19 Public Health England Campaign Posters – https://coronavirusresources.phe.gov.uk/
Guidance on how to get support as a vulnerable person
You may have received a letter from the NHS telling you that you’re clinically extremely vulnerable, or been contacted by your GP or hospital clinician. If this has not happened yet, contact your GP or clinician after you register with this service.
If you have a medical condition which makes you extremely vulnerable to coronavirus (COVID-19), register and inform whether or not you need support. It may take time for any support offered through this service to arrive. Wherever possible you should continue to rely on friends, family and wider support to help you meet your needs. You can register yourself, or on behalf of someone else.
Before you start
You’ll be asked for your NHS number but you can still register if you do not have it. You can find it on any letter the NHS has sent you or on a prescription.
This service is available in England. There’s separate guidance for: Northern Ireland, Scotland and Wales.
You can also apply by telephoning 0800 028 8327.
Gloucestershire Community Help Hub
A new service set up to support people locally.
You can request support online at https://www.gloucestershire.gov.uk/gloucestershires-community-help-hub/
Examples of support they can help organise are food delivery, dog walking, picking up prescriptions, putting out bins, staying connected calls, helping sort out appointments etc.
Requests will be sent to district council locality hubs to organise help. If you cannot use online forms, call 01452 583519 Mon-Fri 8.30am-5pm, Sat-Sun 9am-4pm.
Community police can help with gently reminding people that they need to stay at home. They can also help to look out for vulnerable people in their locality.
Check on the Gloucestershire Police website under neighbourhoods for contact details of local officers/PSCO’s, or phone 101.
If you are concerned about the person you support going out and not being able to find their way home, you should complete The Herbert Protocol (if you have a red folder you will find a copy in there) you can find out more information and download a form at www.gloucestershire.police.uk/notices/af/herbert-protocol/ or contact Managing Memory Together on 0800 694 8800 or firstname.lastname@example.org, who can send you a copy by email or in the post.
Telecare equipment uses sensors in the home to monitor potential accidents and emergencies. (e.g. falling, flood, fire etc.) There are activity monitors which can allow a carer to check if the cared-for person visits the bathroom or kitchen or if they wander from home. For more information visit www.gloucestershire.gov.uk/telecare The website also has an online assessment tool. You can also contact the Adult Helpdesk 01452 426868 for more details.
Gloucestershire Carers Hub
Information, advice and guidance for carers, including advice on benefits, carer assessment and support planning, carers’ counselling service and a peer mentoring service. They also manage the Carers Emergency Scheme. Carers can sign up to receive e-newsletters and are invited to training events and trips. They are currently providing support over the phone and through online training events.
Gloucestershire Young Carers
Locally, Dementia Advisers are making additional welfare calls and offering companion calls. They are identifying the most vulnerable service users and working closely with other service providers and district councils to connect people with local support. Contact 01452 525222 or email email@example.com