Dementia Carers Support Guide

52% of the UK public will know someone who has been diagnosed with a form of dementia within their lifetime, with 1 in 79 people in the UK living with dementia. Dementia effects millions of people each year, from the person living with dementia to their loved ones. A dementia diagnosis should not mean the end, support is available to ensure that individuals living with dementia, their friends and family can still live a fulfilled and enriching life.

Are you a carer for someone living with dementia?

You’re a carer if you are regularly looking after someone, because they're ill, they're an older person or they're disabled. A dementia caregiver provides ongoing, quality care for someone suffering from dementia. Caring for someone living with dementia can be a challenging and isolating, but with the right support in place it can be a rewarding experience.

Carers Assessment

If you are a dementia caregiver you may have an assessment to see what support is available. A carer’s assessment is available for those over the age of 18 and is free, it can help to make life easier and provide extra support. To get a carer’s assessment contact adult social services at your local council and request one. Carer's assessments - Social care and support guide - NHS (www.nhs.uk) is a helpful resource to guide you through the process of getting a carers assessment.

How to help someone with dementia with everyday tasks?

In the early stages of dementia, life may continue as it did before their diagnosis. As the symptoms of dementia progress, it can become harder for the person to continue living as before. It is important to support the person to maintain independence, social life and mental stimulation.

Help with eating and drinking

A healthy, balanced diet is an important part of all of our lives. Common symptoms of dementia can make eating and drinking harder for those living with dementia. To help with this, you could try:

• Involving the person in meal prep or in deciding what to eat/ drink
• Offering a snack before mealtimes
• Allowing plenty of time around meals to ensure it is not rushed
• Providing finger food if the person struggles with cutlery
• Offering a choice of drink
• Giving them smaller, more regular portions
• Ensuring the person always has a drink beside them

Help with incontinence and using the toilet

People with dementia commonly experience problems with going to the toilet, this can be difficult to deal with for you and the person you care for. These ideas may make it easier for the person living with dementia;

• Helping to identify where the toilet is – a sign on the door including words and pictures, using contrasting colours on the toilet (a black seat on a white base), leaving the toilet door open and the light on.
• Clothing – Choosing clothing that the person can remove easily when using the toilet.
• Plan in advance – When going out know where the toilets are located, bring spare clothing, fit a lightweight pad (the kind that attaches to underwear).
• Toilet reminders – Asking regularly if they need the toilet (every 2-3 hours), asking if they have used the toilet and not forgotten/ got distracted.

Help with washing, bathing and getting dressed

Personal care activities, including washing and bathing, can be a source of anxiety for people with dementia and their carers. These tips can help to ease this anxiety:

• Check the temperature of the water, the person may feel reassured if they also feel the temperature of the water with their hand before getting in
• Before washing, discuss with the person what they would like to wear
• Using a bath seat, or making sure the bath water is shallow
• Ensuring privacy and dignity is maintained, if you are assisting with washing try uncovering only the part of the body you are washing
• Use products that the person is used to

Communication

Communicating can become harder as dementia symptoms progress, some ways to make communication easier are:

• Maintain eye contact if possible
• Include the person in the conversation
• Give them plenty of time to communicate and remove distractions when possible
• Avoid asking too many questions, giving the person options or asking closed questions may help
• Paying close attention to facial expressions and body language

Establishing dementia care at home

Making your home dementia friendly

When your home incorporates the elements of dementia friendly design, your loved one’s memory is aided, risk of falling is reduced and independence is increased. A few key things to consider are:

• Lighting – Opening curtains during the day, light switches are easily accessible, ensuring the bedroom can become dark to aid sleep.
• Flooring – Removing rugs or mats, wires and cables are neatly tucked away.
• Contrasting colours
• Labels and Signs – With both words and pictures, placed just below eye level.

Read Alzheimer's Society's guide, Making your home dementia friendly for more information and a home checklist.

What can you do to support someone with dementia as it progresses?

Hospital visits

Going into hospital can be a stressful time for both the dementia carer and the person they are caring for. Informing staff that the person has dementia and asking to be kept informed and involved in decision-making can help with the person’s continuity of care. The Alzheimer’s Society has a downloadable leaflet ‘This is me’ that can be used to record important details about the person, you can find this here: This is Me leaflet.

If you have a scheduled hospital appointment, below are some helpful tips to make this as easy and stress free as possible:

• Involve them when packing an overnight bag
• Label any clothing or belongings with the person’s name
• Arrange any transport well in advance
• Discuss any belongings they may like to take with them

When is it the right time to move into a care home?

A person with dementia will need more care and support as their condition progresses, there may become a time when they will need to move into full-time or residential care. It can be hard to know when the right time is. Below are some things to consider:

• Is the person able to make decisions about their care?
• Have you considered other options, such as care at home?
• In what way may staff be able to provide better care?
• What would be the benefits to the person living with dementia and yourself if they were to move into a care home?
• Is there someone you can discuss your feelings with?
• Has the person ever expressed any opinions about going into a care home?

Moving to a care home

It’s not always easy to move in somewhere new, to help your loved one get settled in quickly here are a few tips:

• Bring your home comforts
• Stay connected, make sure your loved one has a way of contacting you such as a mobile phone or landline
• Talk to staff, make sure they know likes and dislikes
• Visit your loved one often
• Encouraging your loved one to explore their new home

If you would like to find out what your loved ones first day in their new home will be like please read: First day in a care home.

When the time is right, we are here to help, find your nearest Barchester dementia care home here.

How do I manage financial and legal issues?

Managing money

People living with dementia may have managed their own finances, but at some point they may need extra support. Arranging to formally manage your loved ones money is a big step for you both. Things that dementia carers should think about with finances:

• What decisions is the person finding difficult?
• Can you help to support the person manage their own finances?
• Is there support on offer to help with their finances?
• Are there any bills that have not been paid or overpaid?

There are a number of benefits that the dementia carer and person may be entitled to;

Find out more about benefits for those over State Pension age

Find out more about benefits for carers

For further support, Alzheimer’s Society has put together a free online course; Managing Money: A Caregiver’s Guide to Finances.

Planning for the future

It’s important to ensure legal plans are put in place as early on as possible to ensure the person living with dementia is involved and expresses their wishes for future care and decisions. Below is a list of useful resources, to help you navigate the path ahead:

Help for Power of Attorney

Help for Trustees

Help with becoming an Appointee

Making an advanced statement

Making a Will

What support is available for dementia carers?

Carers need support as much as anyone, and looking after your own mental and physical health means you can focus more of your time and energy into properly supporting the person in your care.

Resources for dementia caregivers

Dementia Carers 

Find Support near you

Events

M4D Radio

Dementia carer forum

Memory Cafe

How to manage guilty feelings

Dementia care courses and training for carers

Carers Trust

Dementia UK

Alzheimer’s Society Learning Hub

Carers Support Centre

Looking after yourself

The needs of the person you are caring for will often come above your needs, this makes it difficult for you to look after yourself properly.

Managing your feelings

• Be realistic and kind to yourself – Remember you can only do so much, you are doing the best you can!
• Remember the positives – When you’re having a really rubbish day, try to reflect on all the positive times you’ve shared.
• Talk to others – reaching out to friends and family about how you are doing can help, there are also numerous support groups available (listed in this article under useful resources)
• Set out priorities – What really needs doing? What can wait? Who can pick up some of the other responsibilities?

Carer’s rights

The Care Act 2014 places a duty on local authorities to promote and maintain wellbeing, both of the people with care needs and of the carers. Wellbeing includes physical and mental health, emotional wellbeing, personal dignity and control over day-to-day life. The Care Act gives the carer the right to have their eligible needs met, for more information please visit GOV.UK. 

Under the Equality Act 2010, if you are looking after someone who is elderly or disabled you are protected against direct discrimination or harassment because of your caring responsibilities. Your rights in work come from two places;

• Your Statutory Rights
• Your Contractual Rights

For more information on your rights at work, please visit CarersUK.

Taking a break

Taking time for yourself is important, respite care is the term used for services that enable you to take a break from caring. Respite care is available in many forms across the UK;

• Day centres: These offer a chance for people who find it difficult to get out and about, it will often provide transport to and from but this could come at an extra cost.
• Home care from a paid carer: This can be for a short period of time, a regular set time or full time live-in care.
• Short-term stay in a care home: This offers the chance for the person to form bonds with others in the local area, this is best if you are going on holiday or need a couple of weeks break. To find your local care home please visit: Barchester, care homes near me.
• Respite holidays: Allows dementia carers a break from everyday life, MindforYou offers supported holidays in the UK for people living with dementia and their carers to enjoy together.
• Family and friends: Allowing friends and family to help can give dementia carers a few hours break during the day to unwind and relax.