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Dementia carers leaflet (CW)

Information for carers of patients living with dementia

Chelsea and Westminster Hospital NHS Foundation Trust is committed to improving dementia care at both Chelsea and Westminster and West Middlesex University hospitals. We are dedicated to improving the patient and carer journey for those living with dementia.

This carers’ leaflet includes:

  • An overview of dementia
  • Details on how to access further information about dementia
  • Information about what the Trust has initiated to support carers and individuals living with dementia
  • Information about how we can work together to help the individual during their hospital stay
  • Supporting information about local services and support groups

An overview of dementia

Dementia is…

A syndrome (group of symptoms), usually of a chronic, progressive and irreversible nature, caused by a variety of brain illnesses that affect memory, thinking, communication, behaviour and the ability to perform everyday activities (World Health Organization (WHO), 2012).

Brain illnesses which cause dementia include Alzheimer’s disease, vascular dementia, mixed Alzheimer’s and frontotemporal dementia, dementia with Lewy Bodies and Korsakoff’s syndrome.

People with dementia…

  • Lose short-term memory
  • Experience disorientation to TPP (time, person, place)
  • May have difficulties with communication
  • May go on walks which seem purposeless to other people (wandering)
  • May hallucinate (experience psychosis)

Further information about dementia

Useful information can be found on the website for Alzheimer’s society and Age UK. There are a number of factsheets related to those living with and caring for people with dementia. For further information you can visit:

Memory impairment resources

The Memory impairment resources aim to improve communication, interaction with the patient and carer and the whole patient experience. It is suitable for anyone who may have difficulties communicating for any reason. We recommend that each individual with dementia has the Alzheimer’s society This is me document. It provides important information about the individual, such as their likes and dislikes and things the individual may need help with. Please find the This is me document attached to this booklet or ask ward staff for a copy. The individual may need support from staff or carers to fill this out.

John’s Campaign

John’s Campaign is an opt in or out scheme for a single carer to remain on the ward outside of visiting hours—this is negotiable with the nurse-in-charge. The scheme enables carers to remain directly involved in the care of the person with dementia while they are in hospital.

Visiting times: On our general wards the visiting times are 2–8pm. As a carer you will be able to discuss and agree hours of access outside of these times should you wish to do so.

Carers’ card: As a carer you will be able to request a carers’ card from ward staff if you decide to opt in to John’s Campaign. This will make you easily identifiable to staff if you are visiting beyond the normal visiting hours.

Dementia Carer Questionnaire

Finding out about experiences as a carer of an individual with dementia can help us to improve the care we give on our wards to people with dementia. Please find attached a Dementia Carer Questionnaire relating to your experience while your relative/friend has been a patient at the Trust.

What can you as a carer do to help?

Supporting ward staff

Sharing your knowledge with ward staff about how dementia is affecting the individual and how our ward staff can best support the individual and you as a carer while they are an inpatient.

Assisting the individual

A discussion should take place with a member of nursing staff, to establish the level of input you would personally like to have, this must be focused only on the individual you are caring for. This must be in line with ward care plans and policies.

Sensory devices

It is vital that the individual you care for has his/her sensory devices—such as glasses, hearing aids and dentures—close to hand. Where possible, ensure they are in working order and are being used. If they’re not, please let a member of staff know and they will assist you.

Familiarity

We are happy for you to bring in items such as photographs and non-valuable memorabilia, as this can provide comfort and reassurance to an individual with dementia.

Information for carers

If someone close to you has been diagnosed with dementia, it’s important not to underestimate the impact this may have on you. Whether you’re the husband, wife, partner, daughter, son, brother, sister or friend of the person, your relationship will change. Many people find that they have taken on the role of a ‘carer’ without making any decision to do so.

Emotional support

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—getting satisfaction from supporting the person—to other feelings, such as loss, grief, guilt, embarrassment and anger. You may also feel awkward about any reversal of your previous roles. It can help to know that this is normal for lots of people caring for someone with dementia.

Practical support

Caring for a person with dementia can become gradually more demanding, physically and emotionally. Getting support will make it easier for you to cope and better for the person you care for.

Social services and the carer’s assessment

As a registered carer you’re entitled to have your individual needs assessed by social services. A carer’s assessment will consider the impact the care and support you provide is having on your own wellbeing and life. You may be eligible for support from the local authority who will offer you advice and guidance to help you with your caring responsibilities. The local authority might charge for some of these services, taking your income and savings into account.

Friends and family: While it can be difficult to accept help, try to involve family members and share responsibilities, as it will take the pressure off you a little.

Benefits and your employer: If you work, explore flexible working options with your employer. If you decide to stop working, take advice about your pension entitlements. Find out about any benefits you might be entitled to.

Support workers: Many volunteer organisations have trained dementia support workers who can provide practical information, guidance and support about caring for someone with dementia. They can offer home visits or support over the phone.

National Dementia Helpline (0300 222 1122): Trained advisers can support you, provide information and refer you to other sources of support.

Carer’s Allowance

If you are 16 or over and spend at least 35 hours a week caring for an individual, you may be entitled to a Carer’s Allowance. You do not have to be related to, or live with, the individual you care for. Carer’s Allowance is money per week to help you look after someone with substantial caring needs. The individual you care for must be awarded Personal Independence Payment (PIP), Disability Living Allowance (DLA), Council Tax Disregard or Attendance Allowance (AA). To apply you can contact the Carer’s Allowance Unit on 0345 608 4321 or through their website. The Department for Work and Pensions (DWP) and the Citizen’s Advice Bureau can also advise you on this.

Your health and wellbeing

For information about take time to ensure you are looking after yourself, see Carers: looking after yourself (factsheet 523) Through The Alzheimers Society.  

Local support services

Carers’ support

Hammersmith and Fulham Carers’ Network
Bishop Creighton House
374–380 Lillie Road
London
SW6 7PH

T: 020 8962 9461 / 020 89603033

Website

Carers Kensington and Chelsea
Carers UK
20 Great Dover Street
London SE1 4LX

T:
020 7378 4999

Website

Wandsworth Carers’ Centre
181 Wandsworth High Street
London
SW18 4JE

T: 020 8877 1200

Website

Carers’ Network Westminster
Third Avenue Office 8
Beethoven Centre
London
W10 4JL

T: 020 8960 3033

Website

Social services

Hammersmith and Fulham
Town Hall
King Street
Hammersmith
London
W6 9JU

T:
020 8753 4198, option 3

Kensington and Chelsea
The Town Hall
Hornton Street
London
W8 7NX

T: 020 7361 3013
Website

Wandsworth
Education and Social Services Dept
The Town Hall
Wandsworth High Street
London
SW18 2PU

T: 020 8871 7707 / 020 8871 6000

Website

Westminster
Westminster City Hall
64 Victoria Street
London
SW1E 6QP

T: 020 7641 2500
Website

Age UK

Hammersmith and Fulham
105 Greyhound Road
London
W6 8NJ

T: 020 7386 9085

Kensington and Chelsea
1 Thorpe Close
London
W10 5XL

T: 020 8969 9105

Wandsworth
549-551 Old York Road
London
SW18 1TQ

T: 020 8877 8940

Westminster
Beethoven Centre
Third Avenue
London
W10 4JL

T: 020 3004 5610

Alzheimer’s Society

Alzheimer’s Society
43-44 Crutched Friars
London
EC3N 2AE

T: 0330 333 0804

Website

To speak to trained advisers, call the helpline on 0300 222 1122.

Mon–Wed: 9am–8pm
Thu/Fri: 9am–5pm
Sat/Sun: 10am–4pm

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