Information for carers of patients with Dementia

Supporting ward staff

Please share your knowledge about how dementia affects your relative/friend and provide suggestions on how staff can best support them while they are on the ward.

‘This is Me’

It helps us get to know the person as an relative/friend. This includes details about their culture, people and places from their lives, preferences, routines and their personality.

It helps us to see the person as an individual and deliver care that is tailored specifically to the persons needs. It can therefore help reduce distress for the person with dementia and their carer. It can also help overcome problems with communication, and prevent more serious conditions such as malnutrition and dehydration.

You may already have this form and we would be grateful if you would share this information with us. This document is available in the hospital and on our website patient information guides page ('This is me'). You may be asked to complete this in our Pre-admission Department. Please do not hesitate to ask a member of staff if you have any questions relating to this information.

Sensory

Please ensure that the individual you care for has their glasses, hearing aids and dentures. Where possible, ensure that they are in working order, are labelled and are being used. Please consider checking their hearing aid battery prior to admission.

Familiarity

Memory boxes are often used and you might like to create your own. Memory boxes contain items that are meaningful to the person that can increase feelings of comfort when in an unknown environment. Please consider:

• A play list of their favourite music, familiar songs or prayers on an ipod

• Use of an ipad, with headphones, to show favourite TV shows

• Old and recent photographs of family members, family occasions and favourite places

• Crosswords, playing cards, magazines.

An operation can be stressful for the carer as well as the patient.

It is important when caring for someone with dementia that you also look after your own health and wellbeing. Try to ensure that you are taking regular breaks, eating a balanced diet and getting regular sleep and exercise.

How can relatives and carers help?

• Bringing in daily newspapers and reading these together
• Orientating the person to day and time
• Reassuring your patient/relative they are being cared for in hospital
• Bringing in their favourite snacks and food 
• Talking to your relative/friend about past experiences and memories
• Bringing in photographs and other momentos
• Letting staff know it you think your relative/friend is in pain or discomfort
• Assisting with caring for your friend/relative, e.g. personal care tasks, eating and drinking.

Patients with Dementia have a higher risk of delirium after surgery. Please see the information booklet for carers of patients with delirium. The above measures will help prevent delirium from developing but cannot protect against it completely.

Planning for discharge

At the RNOH, planning for discharge begins with the decision to operate. We screen all patients over the age of 65 for memory problems in the pre-admission clinic and all patients with known dementia are discussed at a complex case meeting with multidisciplinary professionals. If you have concerns in regards to admission or discharge please raise them with staff.

Examples include:

• If you require guidance and support regarding the social aspects of managing with dementia you can be referred to the RNOH social work department.  They will complete a thorough assessment and can offer you advice, support and signpost/refer you to approriate community services
• The occupational therapists and physiotherapists can assess mobility, transfers and daily activities to ensure they have the appropriate equipment and support for a safe discharge.  We aim to make your relative/friend as independent as possible prior to discharge and will refer to community services if additional support is needed.

• We will try to avoid using any medical equipment that may disturb patients, such as urinary catheters (small tubes inserted into the bladder to help patients pass urine without leaving their bed) or intravenous cannulas (drips), unless they are necessary for their treatment.
• We will make sure that the patient has enough fluids so they do not become dehydrated or constipated.
• We will make sure that the patient has easy access to their glasses, hearing aids or any other aids they need.
• We will try and encourage the patients to manage their personal care and daily activities and if necessary they will be referred to occupational therapy to assess and manage these tasks.
• We will avoid moving patients around the ward or to another ward where possible. However, some moves, for example to comply with infection control requirements, may be unavoidable.
• We will ensure that the patient has enough food. We will check that they can feed themselves, and also find out if they have any favourite foods in order to encourage them to eat. At the RNOH we use a red tray system at mealtimes to identify those patients who require assistance with their meals.
• We will help the patient to restore and maintain their normal sleep pattern. For example, we will help them to avoid taking naps during the day, keep noise to a minimum and ensure that there is low lighting at night.

Some patients with Dementia already have a lasting power of attorney for health and finances. If you do have these documents please bring them with you. If you are interested in these we suggest the following websites for further information:

www.ageuk.org.uk/information-advice/money-legal/legal-issues/power-of-attorney/

www.gov.uk/power-of-attorney

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.

Emotional support

Caring for someone with dementia can be difficult and demanding at the best of times. It is important that you receive sufficient emotional support to help you overcome the difficulties you may face. Please do not hesitate to speak to the RNOH staff.

Support from available services

On the following pages there is a list of some of the support services available that may be able to support you in your role of caring for someone with dementia.

National Helplines

• Carers UK

0808 808 7777

www.carersuk.org

• Alzheimer’s Society’s National Dementia Helpline

0300 222 11 22

www.alzheimers.org.uk

• Age UK Advice Line

0800 169 6565

www.ageuk.org

The Alzheimer’s Society

The Alzheimer’s Society have produced a number of factsheets on a variety of topics related to dementia and caring for someone with dementia in order to support individuals living with dementia and their carers. You can visit www.alzheimers.org.uk for further information.

‘The Dementia Guide’

The Alzheimer’s Society have produced a guide with important information for those newly diagnosed with dementia and their carers. This booklet helps people understand more about dementia and the treatments, support and services available. You can request this booklet directly from The Alzheimer’s Society. You can request this booklet directly from the Alzheimer s Society or ask staff to request a copy from a member of the dementia team.