Introduction to dementia
If you’re new to working with people with dementia or feel you are less experienced, you might want to start with our Quick Guide to Care and Support of People with Dementia - Covid-19.
This is aimed at those people new into care or who have been redeployed from other areas to provide essential principles for caring for people living with dementia. It can be used as part of an induction or for people to read in their own time.
If you have a suggestion for something you want tips on, Contact us.
Watch this short video to learn about dementia and become a Dementia Friend online.
All the latest advice on novel coronavirus (Covid-19) can be found on Public Health Wales' website, including the most recent advice for carers.
If you need immediate support, see support and helplines.
Understanding dementia and Covid-19
Research from other countries has shown us some of the ways Covid-19 can affect people with dementia.
Here is a short summary of the key points:
- Although there’s no evidence Covid-19 accelerates dementia, it can cause hypoxia (less oxygen in the blood) and delirium.
- It’s important to continue to manage a person’s dementia, so they may require more support at this time, for example in managing medication and routine. Use prompts, such as phone calls or technology to set reminders.
- Symptoms of dementia may become exacerbated due to changing routines and increased anxiety. Support routines, develop calm spaces, and support carers emotional wellbeing.
- Changes in environment, such as a hospital admission, can also increase dementia symptoms as the person with dementia may become disorientated and confused. Hospital environments can be noisy, with bright lighting. Staff using PPE equipment can also be frightening and increase anxiety and distress.
- People with dementia or mild cognitive impairment may find it difficult to remember and understand about Covid-19. They may find it difficult to remember to wash their hands regularly and to not touch their face. They may forget that they have been asked to stay at home or in their rooms in a care home and may not understand the need to maintain social distance. Memory aids may need to be used.
- Family and professional carer anxiety, stress, loneliness and fatigue is also likely to be increased; support workers and families health and wellbeing may be put under strain.
A short, extended summary of Covid-19 and Dementia: lessons from China is available.
People with Lewy Body Dementia are very susceptible to infection and it is very important to reduce their risk of exposure to Covid-19. Advice for people living with Lewy Body Dementia and their family and carers during Covid-19.
If you are looking for any research that has been published or is currently happening in relation to Covid-19 and dementia, you can look here.
CADR (Centre for Ageing and Dementia Research) have published a review of the published research of the impact of Covid-19 on people living with dementia and their carers. It shows that the pandemic affected people physically, cognitively and impacted on their mental health and wellbeing. There were high levels of carer stress and exhaustion. You can find a summary here.
Understanding each other
Communication isn’t just speech. We communicate with each other through our body language, our facial expressions, the noises and movements we make. It’s important to learn ways of communicating that work for the person with dementia, not ones that work for us.
These are the ways in which we communicate.
Here is some advice on communicating well with people with dementia.
For those who have difficulty with speech, there are Covid-19 picture cards to help you communicate with each other. They are available in a number of languages, including Welsh.
Working with PPE
We know that there will be additional barriers to communication during this time. Staff will need equipment to protect them, but this can be confusing and upsetting for some people. Here are some resources to help you overcome some of those barriers.
Here is a helpful video with tips on how to explain wearing gloves.
Culture and language
It is important to recognise a person’s language and culture when you are learning about who they are.
Welsh speakers living with dementia need be supported to speak their first language. Some may struggle to remember English words. If you’re not a Welsh speaker, you could try the following ideas:
- find out if there are Welsh speakers who could speak to the person with you
- learn some basics, such as pronouncing a persons name
- use more facial expressions and body language.
Here are some useful resources to help you to communicate in Welsh. This resource has the ability to produce and respond to human speech (text to speech and speech recognition) and you can go here and hear how to pronounce phrases such as ‘how can I help’ and ‘where is the pain’.
The Caring in Welsh App is particularly useful to support workers with little or no Welsh language skills.
Working with people from black, Asian and minority ethnic communities
There are some useful leaflets on dementia in a number of languages. It is important to share information leaflets with carers or family members too.
For those who have difficulty with speech, there are Covid-19 picture cards to help you communicate with each other. They are available in a number of languages.
There are also resources on providing spiritual care to different faiths at the end of life.
Understanding why someone is distressed
This section helps you think about distress and how it can affect a person with dementia.
When we’re distressed, uncomfortable or in pain it affects how we behave. It may not always be possible for a person with dementia to explain what is upsetting or hurting them – it’s our job to try and find out.
You might notice someone starts to behave differently and not know why. Here are some of the changes you may see and what they could mean.
Here are some tips on how to approach a situation with empathy and understanding.
You may find people ask questions that are difficult to know how to answer. Here are some tips on why someone may ask those questions and how you can respond.
These checklists have been developed to help you think about the experiences of a person living with dementia and why they might be demonstrating different behaviours that are unusual for them or out of character. They will support you to think about the meaning (communication) of the behaviour and enable you to explore how we can support and met their needs.
A Happy Box is also a good way of relieving distress. Here’s advice on how to create a happy box.
There may be another reason someone is behaving differently, could it be due to delirium? If a person is unwell and their behaviour has changed, consider delirium. See guidance on don't discount delirium and NICE’s social care quick guide to recognising and preventing delirium.
Activities and routine
Routine is important. It’s important to try and maintain a calm environment and a good routine to minimise upset and distress and to help a person maintain their independence.
Maintaining a healthy sleep pattern is really important for people with dementia, here is advice on maintaining the sleep-wake cycle.
A daily routine will make staying at home easier. It can help the person know what to expect on a given day and feel less anxious, especially if they are worried by everything in the news. Alzheimer’s Society have given this advice about maintaining a routine:
- Put a regular schedule in place – you might find it easier and more reassuring to do things at the same time each day or week. If you find you feel better at certain times of the day, try to arrange activities for then.
- Keep things straightforward – simplify your routine or daily tasks to make them more manageable.
- It might not be possible to follow the person’s routine, for example, if this usually includes several daily walks. Try to looking at alternatives based on what the person particularly enjoys – whether that is exercise, fresh air, flowers or hearing birdsong.
- Take things one step at a time – try to focus on one thing at a time and break each task down into smaller steps.
Tips for starting new activities
- Put out the things you need before starting an activity, for example, tools for gardening or ingredients for cooking. The person with dementia might like to help you with this.
- Reduce distractions such as background noise.
- Give yourself time and take things at a slower pace if you need to. And be reassuring if the person finds things difficult.
Music can bring people together, stimulate the brain and reduce feelings of agitation. We’ve found a couple of practical resources with ideas about how you can bring music into the lives of people living with dementia.
Music for dementia has put together a list of ideas and suggestions about what you can do and where you can find musical resources.
BBC Music Memories has a lot of music that you can search by type and ‘memory radio’ with archived radio shows.
Playlist for life have more specific information and tips about how to put together playlists of music that everyone can enjoy.
The My house of memories app lets you explore objects form the past and share memories.
Health Innovation Network have a catalogue of helpful activities.
There are some simple ideas for care homes to try while maintaining social distancing.
Keeping fit and healthy
There are many ways you can help people remain fit and healthy whilst self-isolating or social distancing.
Food and drink
Support people to maintain a healthy diet, follow the advice on the health eating factsheet.
Make sure someone is keeping well hydrated and drinking plenty of water. Some-times people may forget to drink enough, so here are some tips to keeping hydrated.
The risk of malnutrition increases as dementia progresses. Here are tips on how to spot the signs of malnutrition.
Regular, gentle exercise can keep us well and help reduce the risk of falls for old-er people. Make sure the person is exercising safely, as explained by AgeUK.
Here are some lockdown exercise ideas:
- Dementia Go have some great videos and exercise sheets, in Welsh and English.
- Here is an active calendar, with exercises, you can print off and use.
- The BBC has lots of short exercise routines for older people on its website.
- There are some simple suggestions to prevent muscle wastage.
If people are not able to get access to podiatry services, encourage people to keep their feet healthy and prevent any physical problems developing. Try this 5 steps to healthy feet quick tip sheet.
Supporting peoples wishes
It is important that we do all we can at this time to support people’s wishes where we can. There may be limited choices at the moment, but whether a person has capacity to make a decision does not change. We still work to the same principles.
If you are new to working with people with dementia, you need to understand capacity. Here are the five principles of the Mental Capacity Act. If you have any doubts on capacity, speak to a manager.
Planning for an emergency
There is a possibility that family members may become unwell and unable to care for a person living with dementia, so it’s important to plan for this.
You can ask family members to fill in this short leaflet by the Dementia Care Partnership forum explaining what needs to happen if they become unwell. If you are a worker, keep a copy for yourself and put another copy somewhere clear, like on a fridge. That way, anyone involved in any emergency care is clear on the key things they need to know about a person. This does not replace a care plan or advance care plan, it is for sharing vital information in case of an emergency.
Don’t forget to ask if someone has completed a This is Me leaflet.
You may want to remind families about the Herbert Protocol. This is designed to support families in case the person they care for goes missing.
End of life care
We may need to have some difficult and upsetting conversations with people. If a person is sadly nearing the end of their life, we need to do all we can to support their wishes. Some people may have already set out their wishes in an Advance Care Plan or put in place Lasting Power of Attorney. We have advice and resources to help practitioners.
Further advice for care homes.
You don’t have to do this alone. Ask colleagues and experts for help. Remember to look after yourself too. Take a look at our page on health and well-being.
Rehabilitation and recovery
This is advice for those supporting people living with dementia after lockdown restrictions have eased. There is also advice on supporting people living with dementia after catching covid.
Long Covid support
The symptoms of Covid-19 for most people resolve within 4 weeks. If symptoms last or appear after 4 weeks it is known as Long Covid. If you are supporting people living with dementia who have long Covid, there is advice on recovery and rehabilitation here. There is advice on:
- how to identify someone who may have long Covid
- how to get it diagnosed
- help and advice on managing symptoms such as breathlessness
- keeping people as independent as possible.
Getting out and about after lockdown or shielding
Getting back out and has been difficult for some people, particularly if you don’t know what to expect.
Get there together is a series of locally developed films that show you exactly what life beyond your door looks like now. These films aim to reduce concerns and reassure anyone who is anxious about what lies beyond the front door, such as what it is like in a library, as well as dealing with the stresses of Covid-19 such as when and where to wear a mask. You can search for videos for your local area.
Back to Community Life is a toolkit to implement to help you as a community plan how to adapt your local area to help people get back to community life. It considers the steps that people may need to take to leave their homes to reengage with the community along with the information and community support that is available to assist to take these steps. The toolkit includes a practical self-help guide with tips to enable people to take steps which can be localised to each community’s needs linking to local recovery focused volunteers and community connectors, recovery friendly spaces within the community and initiatives that local community business, shops and services have taken to support people get back to community life; recovery friendly volunteer job specification, template letter to business and shops, posters leaflets and a how-to-guide to set up the initiative. The toolkit is available here.
Some advice on Covid-19 vaccination for people living with dementia is available here.
We know the pandemic and lock downs may have had a significant impact on relationships with people living with dementia. You may be a family member or a care home worker, who needs some advice on rebuilding connections and relationships with the people you care for or families you support. This toolkit offers practical support.
Support, helplines and webinars
Here are some frequently asked questions and national helpline numbers that give further help and advice.
If you have a suggested question we can add to this page, Contact us.
What do I do if someone I’m supporting needs help out of hours?
Find the name and number of your local emergency duty team (EDT). This will be on the local authority website, look for the emergency duty team or out of hours team. In an emergency, call 999.
What if someone needs help with shopping?
Speak to your local authority or you local Community Voluntary Council (CVC) to see what help is available in your area.
Dementia UK helpline 0800 888 6678 - a specialist Admiral Nurse will answer your call.
Alzheimer’s Society Dementia Connect support line 0333 150 3456 or Welsh-speaking support line on 03300 947 400 - dementia advisers offer support and advice, including advice on coronavirus, and can connect people to the help they may need. Phone support is available seven days a week.
Age Cymru provide telephone support and advice for those over 70 who live in Wales, you can find out more about Friendship Line online or by calling 0300 303 44 98.
Age Cymru’s Dementia Advocacy Project is a person led service that gives people with dementia the fundamental right to have their voice heard in some of the most important areas of their life, ensuring their rights, wishes and personal choices are always respected.
The Silver Line is a free confidential helpline providing information, friendship and advice to older people, open 24 hours a day, every day of the year. You can call them on 0800 4 70 80 90.
Care and Repair and partners provide the Managing Better service - available to anyone over 50 with dementia, and further conditions, in particular sensory loss. This includes advice and support on a range of things to help you manage at home, including adaptations, emergency repairs, advice and sup-port for falls prevention, home safety and warm homes. Call 0300 111 3333 or visit the Care and Repair website.
Wales Dementia Helpline offers emotional support to anyone, of any age, who is caring for someone with Dementia as well as other family members or friends.
The service will also help and support those who have been diagnosed with Dementia.
You can also access information and support through webinars and social ‘online’ events. The 3NDWG have a series of online webinars about dementia and covid 19, led by people living with dementia.
Nigel Hullah is the chair of the ‘3 Nations Dementia Working Group’ (a working group of people living with dementia across England, Northern Ireland and Wales).