Dementia carers leaflet (WM)

Information for carers of patients living with dementia

Chelsea and Westminster NHS Foundation Trust are 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 Chelsea and Westminster NHS Foundation 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 ability to perform everyday activities (WHO 2012). 

Brain illnesses which cause dementia include Alzheimer’s disease, vascular dementia, mixed Alzheimer’s and vascular dementia, fronto-temporal 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)

Prevalence of dementia

  • 50 million people in the world
  • 850 000 people in the United Kingdom
  • 79 876 people in London (2011)
  • Approx. 30 % of all acute general  hospital admissions
  • Note –only a third of these have a formal diagnosis, access to treatment and support. The UK government wants the NHS to find the rest.

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:

Forget Me Not 

The Forget Me Not scheme aims 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 any ward staff for a copy. The individual may need support from staff or carers to fill this out.

Johns campaign

Is an opt in or out scheme, for a single carer to remain on the ward outside of visiting hours, this will be negotiable with the nurse in charge. This will enable cares to remain directly involved in the care of the person with dementia whilst they are in hospital.

Visiting times: On our general wards the visiting times are currently 2pm – 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 the ward staff if you decide to opt in to Johns campaign. This will make you easily identifiable to staff if you are visiting beyond the normal visiting hours.

Dementia Carer Questionnaire

At Chelsea and Westminster NHS Foundation we are striving to improve the care we give on our wards to people with dementia. Finding out about the experiences as a carer of an individual with dementia can help us to do this. Please find attached a Dementia Carer Questionnaire with questions that relate to your experience whilst your relative/friend has been a patient within Chelsea and Westminster NHS Foundation 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 whilst they 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 

It is vital that the individual you care for has their glasses, hearing aids and dentures close to hand. Where possible, ensure that 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, 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 - 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. 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 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 also 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 some 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 voluntary 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 the 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) 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 & Pensions and the Citizens Advice Bureau can also advise you on this.

Your health and wellbeing

Take time to ensure you are looking after yourself, for more information see factsheet 523, Carers: looking after yourself through The Alzheimers Society.  

Alzheimer’s Society

a leading support & research charity for people with all types of dementia, their families & carers

Alzheimer’s Society, Local Services Office, Hounslow & Ealing
St Vincent’s House
49 Caroline Street
London
W6 9QH

T: 020 8563 0360
E:  

Dementia Concern
223, Windmill Road
Ealing
London
W5 4DJ 

T: 020 8568 4448
W: 

Alzheimer’s Society, Richmond
25A Olav Road,
Richmond,
DL10 4PU

T: 01748 825817
W: alzheimer’s.org.uk 

Richmond (Hampton Hill) support group for people with Dementia
Greenwood Centre,
1 School Road,
Hampton Hill,
TW12 1QL

T: 020 8036 9570
E:    

Local support services

Hestia—Mental Health and complex needs

Enhanced Dementia Care: 07557 179 074
E:  

Integrated Neurological Services, Twickenham
82, Hampton Road
Twickenham
Middlesex
TW2 5QS

T: 020 8755 4000  

Richmond Carer’s Centre
5 Briar Road
Twickenham
TW2 6RB

T: 020 8867 2380
E: 

Crossroads Care
West London-Hounslow
82, New Heston Road
Heston
Middlesex
TW5 OLJ

T: 020 8570 6963

Ealing Carers Centre
Sycamore Lodge
1,Edgecote Close
Acton
London
W3 8PH

T: 020 31376194
E: 

Crossroads Care – Richmond & Kingston
Beverley Court
26, Elmtree Road
Teddington
TW11 8ST

T: 020 8943 9421
E: 

Age UK

Age UK - Hounslow
67, Southville Road
Feltham
Middlesex
TW14 8AP

T: 020 8560 6969 

Age UK – Ealing
Greenford Community Centre
170, Oldfield Lane (South)
Greenford
UB6 8TL

T: 020 8567 8017
W: ealing.gov.uk

Age UK – Richmond
Suite 301, 3rd Floor
Parkway House
Sheen Lane
London
SW14 8LS

T: 020 8878 3625
E: 

Age UK-Barnes
The Green
Church Road
Barnes
SW13 9HE

T: 020 8876 2377

Social services-local Authorities

Hounslow Council Adult Social Services
Hounslow House
7, Bath Road
Hounslow
TW3 3EB

T: 020 8583 3100
E: 

Richmond Adult Social Care
Civic Centre
44, York Street
Twickenham
TW1 3BZ

T: 020 8891 7971
E: 

Ealing Adult Social Services
14-16 Uxbridge Road
Perceval House
Ealing
London

T: 020 8825 8000
W: ealing.gov.uk

Contributors
George Vasilopoulos thomastn