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
- Myageingparent.com has worked with people with dementia, their carers and professionals to develop ten top pieces of advice for looking after someone with dementia.
- The NHS Choices website also has lots of practical tips and advice.
- The Alzheimer's Society have information about looking after yourself as a carer of someone with dementia.
- 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.
- There are a variety of dementia support and advice events happening around the county over the next couple of months which give you the chance to talk to professionals and other carers. See the news and events section for more details.
- The 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.
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.
Derbyshire Dementia Support Service - Making Space
Derbyshire Dementia Support Service has been jointly commissioned by Derbyshire Adult Care and health commissioners and is provided by Making Space Derbyshire. 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
- maintaining independence
- changes in relationships and behaviour
- referrals to memory assessment services
- advice and support about day-to-day caring
- making links to financial and legal support.
This service also organises a range of support and activity groups at locations across Derbyshire. The groups include dementia memory activity groups, musical memories sessions (which you and the person you care for can attend together) and carers support groups - these groups are listed in the Carers Directory or you can download the flyers:
To get in touch with the Dementia Support Service please contact:
- Tel: 01246 592010
Carer respite groups
In Alfreton, Belper, Ilkeston and Long Eaton, Making Space have started new Respite Care Activity and Memory groups. These groups give you the chance to drop your loved one at the group for a couple of hours while you get a break. You can find details of the groups by searching the Carers Directory for 'respite' as the type of service and 'dementia' as the type of caring support. Making Space are planning to develop more of these type of groups around the county in the coming months.
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. You can visit the campaign website to see which care services in Derbyshire have pledged to welcome carers.
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 Constabulary 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
Derbyshire Community Health Service (DCHS) offer a Living Well With Dementia programme that is offered to both carers of people with dementia those who are in the in early stages of dementia themselves. The programme aims to offer help and support in coming to terms with the diagnosis and to give practical advice on living well with dementia, including explaining what professionals can do to help. The service information leaflet has further details about the topics covered.
Two separate groups, one for carers, run in tandem for seven weeks at health centres across north Derbyshire. The service is open to people from all over Derbyshire may attend if they can get to the locations: Clay Cross Hospital, Alfreton Health Centre, Walton Hospital in Chesterfield, the Staveley centre, Moorfield Day Unit at Bolsover Hospital, Stubley Medical Practice in Dronfield. Carers can refer themselves or ask professional to refer them.
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
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.
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.
Delirium is a treatable condition and may co-exist with dementia. However, it is sometimes difficult to recognise in people with dementia because it has similar symptoms such as confusion and difficulties with thinking and concentration.
Joined up Care Derbyshire have developed a Delirium and dementia awareness training pack. The online training takes around 30-40 minutes and is aimed at people with dementia, their carers, families and professionals to help them recognise, manage and prevent delirium.
Other helpful websites
- Dementia Carer
- Macmillan - guide for carers who are supporting someone with dementia who also has cancer
- Age UK - caring for someone with dementia
- NHS website - dementia carers guide
- Alzheimers Society including support in the East Midlands
- Making Space
- NHS Education - Dementia Guide for Carers - Free download on Kindle, iBook or Apple app
- Unforgettable - products to help people with dementia
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