Caring for someone with dementia
The number of older people in the UK in need of care and support is expected to reach 1.7 million over the next 20 years, and it is estimated that by 2025 over one million people will have dementia.
Caring for and supporting someone with dementia can be stressful and at times upsetting. It can also be very rewarding and there may be good times. It is important that you look after your own health and wellbeing, and turn to others for support when you need it. There is advice available to help you understand dementia and do all you can to support the person you care about.
When a person with dementia finds that their mental abilities are declining, they often feel vulnerable and in need of reassurance and support. The people closest to them - including their carers, friends and family - need to do everything they can to help the person to retain their sense of identity and feelings of self-worth.
When you're caring for someone with dementia, you're likely to experience a wide range of emotions at different times. These may range from positive feelings - you get satisfaction from supporting the person - to other feelings of loss, grief, guilt, embarrassment and anger. You may also feel awkward about any reversal of your previous roles and changes in your relationships. It can help to know that this is normal for lots of people caring for someone with dementia and you aren't on your own.
Good sources of help and information
- Joined Up Care Derbyshire have produced a Frequently Asked Questions document to help people with dementia and their carers access support during the coronavirus pandemic. The document explains where you can go for help in different situations.
- The Alzheimer's Society have great information about looking after someone with dementia, including advice on looking after yourself.
- The NHS website also has lots of practical tips and advice.
- Derbyshire Adult Care produce a leaflet called Guide to Dementia Services which gives a good overview of the support available. You can order a paper copy using the Adult Care leaflet order form.
- Our training for carers page has details of a variety of eLearning courses aimed at carers of people with dementia.
- Age UK Derby and Derbyshire offer a range of services, including footcare, memory lane groups, housing support, day services and falls prevention services aimed at older people, including those with dementia and their carers.
- Tide, ‘together in dementia everyday’, is a UK wide involvement network of carers, former carers and health and care professionals who are working together to build a better future for carers of people living with dementia.
- Caring for someone with dementia at home - A resource pack for carers
- Carers of people with dementia - Overview (socialcaretalk.org)
Getting support
Try and take time to reflect on how you're feeling, and talk to someone you trust. You might choose a professional, a friend or family member, or someone at a carers' support group. The Carers Directory has details of support services specifically for carers of people with dementia in Derbyshire as well as services aimed at carers generally such as Derbyshire Carers Association.
You can also find out about sitting services and respite so you can get a break from caring. You may be able to access a Carer Personal Budget to help pay for this.
You could also try an online discussion and support forum like the Alzheimer's Society's Talking Point forum.
Derbyshire Dementia Support Service - Alzheimer's Society
The Derbyshire Dementia Support Service has been jointly commissioned by Derbyshire Adult Care and health commissioners and is provided by the Alzheimer's Society. Dementia Advisers are available in all areas of the county to help people with dementia and their carers to access further information, advice and support including:
- understanding dementia
- how to get help locally
- maintaining independence
- financial and legal matters
- caring for people with dementia
- changes in relationships and behaviour
- community care
- long stay care
You don’t need an official diagnosis of dementia or be of a certain age to get advice and support from the service.
The service can support both you and your family members/carers through the different stages of dementia. It delivers a range of groups for people affected by memory loss or dementia where you can meet other people who have similar circumstances to you - at the moment some of these groups are being delivered online. Please contact the service for further information.
To get in touch with the Dementia Support Service please contact:
- Tel: 01332 208845
- email: derbyshire@alzheimers.org.uk
- website: Dementia Derbyshire - Dementia Derbyshire
During the Covid-19 pandemic, the service has had to make changes to the way they offer support. This service offer flyer explains how they are currently support people with dementia and carers. The service has also carried out engagement with people living with dementia, carers/families and professionals to understand how the pandemic has affected their lives. The results of the engagement will be used by social care and the NHS as they look to respond to the challenges the pandemic has brought in the coming months.
Life is for Living video
Life is for Living is a seven minute film produced pre-lockdown by the arts group People Express in partnership with Amber Valley Dementia Peer Support Group. It was funded by Derbyshire Public Health through the Health and Wellbeing Partnership in Amber Valley and features people with dementia and their carers talking about their experiences of living with dementia and the value of peer support.
The main aim of the project is to enable the group to ‘gift’ their personal stories, experiences, learning, passions and belief that ‘life is for living’ to inform and support other people affected by dementia; including Carers, people newly diagnosed and those pre-diagnosis.
If you want to be involved with a peer support group similar to this, the Derbyshire Dementia Support Service are now running virtual groups. For more information tel: 01332 208845.
John's Campaign - hospital stays
John's Campaign encourages health and care providers such as hospitals, rehabilitation units, care homes and similar to welcome the carers of people with dementia and let them stay with the person as often as possible.
Derbyshire Carers are currently working with Chesterfield Royal Hospital to implement John's Campaign and make sure carers can be fully involved in their loved one's care while they are in hospital. This includes a 'carers passport' so carers can continue to give practical support to the person they care for and be with them outside visiting hours.
Young onset dementia
Are you are carer of someone with ‘young onset’ dementia?
dementia is classed as young onset when it affects someone aged 65 or under. It is also known as early onset or working age dementia. Currently there are more than 42,000 people in the UK who have the condition. Young onset dementia can often be difficult to recognise.
Young dementia UK provides information, support and resources on the condition. You can visit their website for more information.
Young Dementia UK also run a network that allows people with young onset dementia, their families and carers to share their experiences in a community environment. The network also enables its members to become involved in influencing national policy and improve the services for them.
The Herbert Protocol - planning for emergencies
The Herbert Protocol initiative is named after George Herbert, a Second World War veteran of the Normandy landings, who lived with dementia and repeatedly went missing from his care home whilst trying to return home.
The Herbert Protocol is a national scheme being introduced by Derbyshire Police and other local agencies which encourages carers to compile useful information which could be used in the event of a vulnerable person going missing.
Carers, family members and friends or professionals can complete the Herbert protocol form containing the information in advance. The form records all vital details, such as medication required, mobile numbers, places previously located, a photograph etc which will help locate the person if they ever go missing.
In the event of your family member or friend going missing, the form can be easily sent or handed to the police to reduce the time taken in gathering this information.
There are also other things you can do and schemes you can access as a carer to plan for an emergency situtation. This could a situtation where either you are unable to provide care or the person you look after falls ill or suffers a crisis.
Live Well With Dementia Programme
The Living Well With Dementia programme is offered to people who are in the in early stages of dementia and their carers/families. The six/seven week programme offers help and support in coming to terms with a dementia diagnosis, gives practical advice on living well with dementia and offers support for carers, including coping skills and help to understand the roles of different organisations and professionals.
During the COVID-19 pandemic the NHS produced an online version of the Living Well with Dementia programme that you can access from the comfort of your own home.
The programme runs at venues across the county:
- North Derbyshire - programme information leaflet or tel: 01246 515576
- South Derbyshire and Derby - programme information leaflet or tel: 0115 9071440
To access the programme you can speak to your GP, social worker or another NHS worker and ask to be referred.
Using technology
There are a variety of ways you can use the internet and technology to make caring a bit easier. If the person you care for is prone to wandering, you can use a GPS tracking device so you can see where they are. This helps maintain their independence as they can get out and about, but there is a safety net in case they get lost. There is even a GPS sensor that goes in the sole of a shoe.
If other family members and friends help you to provide care there are group messaging apps that making organising care easy.
Dementia engagement 2021
During early 2021, Alzheimer's Society carried out engagement with people living with dementia and their carers to understand how local people had been affected during the pandemic. The results and report are available here.
Emotional Impact of Living With Dementia
The Social Care Institure for Excellence have developed a video about living with dementia. It shows how supportive relationships with families, friends and professional carers can play a key role in supporting people with dementia and helping them to live well.
Dementia Friends
The Alzheimer's Society's Dementia Friends programme is the biggest ever initiative intended to change people’s perceptions of dementia. It aims to transform the way people think, act and talks about the condition. So far nearly 2 million people have become a Dementia Friend by attending an information session or completing the eLearning course. You can find a session in your area on the Dementia Friends website or complete the online training.
Delirium and dementia
A sudden change in a person’s mental state is known as delirium. Delirium could lead to increased confusion, disorientation, or difficulty with concentration, and can come on very quickly. It can happen when you are medically unwell and can be caused by infections, pain or dehydration. Delirium can be very distressing both for the individual and the people who are caring for them.
This video by Joined Up Care Derbyshire helps to explain Delirium and how to spot the signs.
