Caring for someone with dementia

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

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.

You can also find out about sitting services and respite so you can get a break from caring.

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

  • Memory Cafes
  • Carers Groups
  • Singing for the Brain

You can find the dates and locations of the groups by searching the carers directory or downloading these PDF lists:

To get in touch with the Dementia Support Service please contact:

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

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.

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

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.

 

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. 

Joined Up Care Derbyshire Dementia Engagement 

The Joined Up Care Derbyshire, Dementia Strategy group have recently undertaken engagement with people living with Dementia, their carers and health and social care staff about the priorities for their Derbyshire Well Pathway for Dementia.

The group wanted to find out what is important to people living with dementia, their carers and the staff who support them. 

The group received 233 responses and a good range of feedback about what is important to people which will help shape their revised Strategic Overview: the Derbyshire Well Pathway for Dementia.

This in turn will help shape commissioning and service provision in the coming years.

You can read a full summary of the engagement responses here

If you'd like further information please contact Phil Wall, email: philip.wall@derbyshire.gov.uk or Claire Biernacki, email claire.biernacki@nhs.net

You can also see further data from the engagement.

Other helpful websites

 

This information was last updated on 02/09/2019

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