Self Care for Carers

Remember to look after yourself

Time to yourself – Make sure you have some regular time to relax or do something just for you. Put aside some time, each day, for yourself – you could have a cup of tea and read the paper, listen to some music, do the crossword or go for a short walk. Remember, there are plenty of options to help you meet your own needs without compromising the needs of the person you’re supporting. It may be hard to put yourself first, even if it is just for five minutes, but you will be better placed to support someone else if you spend a bit of time looking after yourself.
Your health – Caring can be hard work, and you need to be healthy and happy if you are to manage it. Try to eat a well-balanced diet, with at least five portions of fruit and vegetables a day. This will make you feel better and give you more strength and energy. Taking regular exercise is vital for your health and will give you more energy. Walk in the fresh air each day if you can, or do some exercises at home. Official guidelines suggest that adults should aim to be active daily. Over a week, activity should add up to at least 150 minutes (2.5 hours) of moderate intensity activity, in bouts of 10 minutes or more – One way to approach this is to do 30 minutes of exercise on at least 5 days a week. Ask your GP for advice if you are unsure.
Annual Health Checks – Carers of someone with dementia should have an annual health check once a year to assess both physical and mental capacity to continue in the role. Ask at your GP practice for more information.
Your financial well-being – Your legal and financial situation may be affected if you are caring for a person with dementia. The Citizens Advice Bureau or local Carer’s Support Service can advise you further on this.

Finance

Subject to a financial Assessment, the person that you support should be entitled to Attendance Allowance and a discount on their Council Tax. In addition to this, it is important to make sure that Wills and Powers of Attorney are established while the person that you care for is still mentally capable of doing so. Here are some common terms:

Enduring Power of Attorney (EPA) – such an agreement must have been signed before October 2007 and allows a trusted person to act on behalf of a person no longer capable of managing their own finances;
Lasting Powers of Attorney (LPA): Property and affairs LPA – enables you (the attorney) to make decisions, on behalf of the person that you support, about their property and affairs at a time when they are no longer able or lack the mental capacity to take those decisions them self. It can only be used once it has been registered at the Office of the Public Guardian (OPG).
Lasting Powers of Attorney (LPA): Personal Welfare LPA – allows You, as chosen attorney, to make decisions on behalf of the person you support about their personal welfare, eg where they live. It can include the power for you to give, or refuse, consent to medical treatment if this power has been expressly given in the LPA.

For more information about Powers of Attorney, please visit the Alzheimer’s Society page on Lasting Powers of Attorney.

Help and Support

If you are supporting someone with dementia, be prepared for the fact that you will also need support at some point. You will probably need a lot of different types of help and support, ranging from practical care to give you time off caring, to having someone to talk to about your feelings and concerns. Think about what help you might need, and where you can get it, before you actually need it. That way, when the time comes, you’ll know where to turn.

Be clear about the support you need to continue in your supporting role. You may need to be assertive and persistent. Make it clear that you cannot continue with your caring role unless you receive the support that you need for yourself.

Find out more about advocacy services and the help offered to Carers:

Dementia Cafes – Can provide a supportive environment both for people living with dementia and those supporting them.

In case of emergency

In your supporting role, sometimes things will go wrong. Do you know who to contact in case of an emergency?

Medical emergencies – telephone 999 and ask for an ambulance.

How does dementia affect someone’s life?

As a result damage to the brain caused by dementia, the person that you support may experience problems with:

Memory loss, especially short term memory loss. In the long-term you should be prepared that the person you care for may entirely lose their ability to recognise you or place you in the overall narrative of their life. Memory loss is likely to make the person that you support feel confused at times;
Interpreting what is going on in the world around them, for example every day tasks like crossing roads can become daunting and confusing;
Thinking things through fully and problems concentrating on tasks;
Understanding and carrying-out instructions;
Calculating the risks involved in their actions;
Learning new things and new skills;
Identifying familiar objects, places and people;
Using critical reasoning and judgement, which previously would have come naturally;
Mood swings and periods of aggressive behaviour – these can often stem from frustration due to memory loss or the person that you care for no longer being able to do the things that they have in the past; and/or
Being able to plan ahead and forecast for the future.

How can you best support someone with dementia

There are a number of things that you can do to help someone who has had a dementia diagnosis. Below are some things to think about:

Try to put yourself in the person’s situation and understand what they might be trying to say or what they are feeling and relate to that
If memory loss is a problem, give tactful prompts about, for example, what time of day it is, what day it is, what you are going to do next
Try not to contradict the person or get into an argument – you’ll both end up exhausted! Try to ‘go with the flow’ and acknowledge what the person has said, even if you know it’s incorrect
Support people to exercise as much as possible – whether in the house, a short walk or an organised walking group. This helps people to stay independent and active for as long as possible. Exercise increases blood flow to the brain which may help to slow the advancement of dementia. It also reduces the chances of physical illness such as diabetes, heart disease and cancer.
Involve the person with daily activities and events, to keep their skills alive and be part of what is going on around them
Break down tasks into sections that can be achieved step by step. For instance, lay out clothes in the order that they will be put on
You might both find it enjoyable to share some happy memories from the past. Photographs and souvenirs may help jog a memory. A person who has short term memory loss may be able to remember things from a long time ago quite clearly
Using questions that start with ‘What / Where / How / Who / When’ may be quite challenging to a person who has difficulty remembering so it might be worth trying to avoid those.
Sing!! Singing with a person who has dementia has been found to be an effective means of communication. Melody and rhythm can help a person who has become ‘stuck’ with their language or movement. A person with quite developed dementia and word finding difficulty may still be able to sing songs learned in their youth. Using these retained skills, as part of the support you give to a person with dementia, may help their sense of well being and self-esteem. Find out more aboutDementia and Music on the Age UK site.
Smile! Enjoy your time together and remember to look after yourself.

Understanding and supporting the person and not the condition

Due to the effect dementia has on the brain, a person’s past is a vital part of their dementia experience. Knowing about a person’s history helps you to support the person with dementia every day. A life history is more than just a series of life events. It includes:

Beliefs, values, religion and faith;
Likes and dislikes.
Important life events, accomplishments and disappointments.
People known to them: spouse, partner, friends, family, colleagues and pets.
Favourite or significant places, important objects and possessions.
Talents, skills and capabilities.
Hobbies and interests.
Education and work life.
Habits.
How the person normally reacts to situations.

It can be easy to only see the diagnosis and condition rather than the person themselves, even if you are supporting someone that you know well. It is important not to forget that they remain an individual with unique qualities, capabilities and experiences and that you should treat them as such, this is sometimes called Person-Centred Care. Here are some ideas for you to think about:

Support and encourage the person to do things for themselves as much as you possibly can;
Stimulation is important, playing cards, dominoes and simple board games can be used to make sure that the person you support is mentally stimulated. ;
Understand what the strengths of the person are and make the most of them;
Communicate clearly with the person, explaining things rather than taking for granted that the person you support will understand. They may not understand things that are happening around them and this can lead to unexpected or challenging behaviours;
Encourage the person to be included, to feel part of a community and, where possible, to carry on with activities they have enjoyed before. Just because they have a dementia diagnosis, people do not stop enjoying the things that they have enjoyed in the past;

Things to avoid in your supporting role

A regular routine might help a person feel more secure, but try not to restrict the person too much in order to fit in with a set routine. Although some routine is necessary, some flexibility will help to give you both a feeling of freedom.
Be mindful of body language and whether this could be seen as negative or threatening to the person that you support. A person who has dementia can often retain the ability to sense your mood from your language and body posture even if they can no longer articulate this.
Avoid dismissing what the person is saying if it seems unreal, it may increase their levels of frustration and may result in you both getting agitated.
Try not to treat the person like a child, or speak to them in a childlike fashion.
Never make fun of ‘strange’ or unusual behaviour. There may be meaning behind behaviours that you need to understand.
Avoid denying choice altogether, instead make choice simple and less complicated. Show two items of clothing or suggest two choices for lunch. Sometimes limiting available options can help ensure that the person is able to exercise as the amount of information that they are presented with is not overly confusing them.

Communication : Things to be aware of

As the symptoms of dementia progress, it is likely that the person with dementia will find it increasingly difficult to communicate. Below are some things to think about when communicating with the person:

Make sure you have the person’s attention before speaking to them, it is worth considering that they may need some time to ‘tune in’ if they have they just woken up? Do they need time to adjust?
Speak clearly and calmly. Try to avoid speaking sharply or raising your voice as this can cause distress to a person who has dementia.
Use simple, short sentences. A person who has memory loss is likely to remember the last thing that has been said.
Allow time for a message to be understood, when communicating, as processing information will take the person longer than it used to.
Make sure that there is enough lighting for the person to see you and, if they are wearing glasses, that they are clean.
Make sure that unnecessary noise is reduced. A person who has dementia will have difficulty concentrating on too many things at once. Sounds like the TV, washing machine, vacuum cleaner etc can be very distracting for them.
Avoid too many closed questions (questions which require a ‘Yes’ or ‘No’ answer) – you might always get “No”! Instead of asking ‘Would you like a cup of tea?’ which might be declined – even though you know the person is thirsty – try something like ‘I’m just going to make a cuppa – do you fancy a biscuit with yours?’.
When talking, use familiar names and jokes that the person has known for a long time. This can give a person a frame of reference for communication when everything else seems hard to grasp.
As the dementia progresses, the person may become less able to start a conversation, so you may have to start taking the initiative more often.

Health

As the Carer, you need to keep an eye on the state of the health of the person you support. As the dementia progresses, they will become less able to identify health problems or to tell you about them, so look out for signs that they might be in pain or discomfort.

The better they feel, the more they can enjoy life, making life more pleasurable for both of you.

Food and Eating

People with dementia may need to be encouraged and reminded to eat and drink. They may also find it difficult to chew and swallow. Here are a few tips worth noting:

Make certain that there isn’t a treatable cause of appetite loss, such as acute illness, depression or denture pain;
Offer snacks and meals regularly, perhaps trying 5-6 small meals a day;
Try and present food in bite sized pieces to avoid any risk of choking;
Try an alarm call or phone call as a reminder at mealtimes;
Try and avoid confusion between foods by encouraging the person to finish one food before moving on to the next;
Serve foods that are familiar to the person you support;
Showing the person that you support pictures of food may help them making choices as they may have forgotten the types of food that they like;
Demonstrate chewing if this seems to be the problem, and eat with the person so that they can copy you;
If they’re having difficulty with cutlery, encourage finger foods;
Consider nutrition supplements, particularly in later stage dementia when people tend to lose a lot of weight;
Always make sure that they get enough fluids throughout the day; and
Not swallowing can be a problem and so prompting the person that you support to swallow may be beneficial.

Dressing

As dementia progresses, the person you support may require increasing amounts of help with getting dressed. It is important to enable people with dementia to make their own choices for as long as they can and, if they do need assistance, to offer it sensitively. Here is some tips to think about if dressing is becoming a problem:

Choice – ask what they would like to put on. Someone with dementia needs to have a choice in what they wear, but too many options can be confusing, so make suggestions one at a time.
Encourage independence – Lay out clothes in the order the person will put them on. Remind them sensitively which garment comes next or hand them the next item that they need. If the person is confused, give instructions in very short steps, such as, ‘Now put your arm through the sleeve’. It may help to use actions to demonstrate these instructions.
Staying comfortable – Make sure the room is warm enough to get dressed in and remember that the person may no longer be able to tell you if they are too hot or cold, so keep an eye out for signs of discomfort. It can be useful if the person wears several layers of thin clothing rather than one thick layer, as they can then remove a layer if it gets too warm.
Think about privacy – make sure that blinds or curtains are closed and that no one will walk in and disturb the person while they are dressing.
Change clothes regularly – Sometimes, people with dementia are reluctant to undress even when they go to bed, or will refuse to change their clothes. It’s important to make sure the person changes their clothes every day, and to find ways to do this without upsetting them.
Go clothes shopping – If you are buying clothes for the person with dementia, try to take them with you, so that they can choose the style and the colours they prefer.
Accept unusual choices – It is important to respect the person’s choice of what to wear. As long as it does no harm, it’s probably better to accept the person dressing in an unusual way, or wearing clothing that is out of place, than to have a confrontation. If the person is determined to wear a hat in bed, for example, or a heavy coat in summer, try to respect their choice, unless it might cause potential harm.
Making dressing a positive experience – Helping a person to look the way they want to look is an important way of maintaining their confidence. Regularly compliment the person on the way they look and encourage them to take pride in their appearance.
Allow enough time – If you are helping someone with dementia to dress, allow plenty of time so that neither of you feels rushed. They may take longer to process information than they used to and this will affect their ability to make choices. If you can make dressing an enjoyable activity, the person will feel more relaxed and confident.

Washing and Personal Care

As with dressing, for most adults, washing is a personal and private activity and so it can be hard to adjust to this change. When you are supporting someone with dementia to wash, it is important to be sensitive and tactful and to respect their dignity.

Personal care, including washing and bathing, can be difficult for Carers and is a common source of anxiety for people with dementia. It is not hard to understand why as most of us have been carrying out these activities on our own since we were children. Other reasons for anxiety around washing and bathing include:

Deep bath water – deep water can make some people feel worried. You can reassure them by making sure the bath water is shallow, or by setting up a bath seat for them to use.
Overhead showers – some people find the rush of water from an overhead shower frightening or disorienting. A hand-held shower may work better.
Self-consciousness – the person with dementia may find it embarrassing to be undressed in the presence of other people. One way to overcome this is to uncover only the part of their body that you are washing at the time, leaving the rest covered.
Isolation – some people may become anxious if they are left on their own and may want you to stay with them while they are washing.
Continence – this may be a sensitive issue for both of you, but can happen frequently as the condition develops. If the person has an accident, they may feel ashamed. They may refuse to admit that it has happened, or to wash afterwards. Try to be reassuring and adopt an approach that fits with the nature of your relationship with the person. A matter-of-fact approach, or humour, often works well. Specialist pads to deal with incontinence are available through the NHS Continence Service.

Safety Precautions

There are some very practical considerations when someone with dementia is using the bathroom. There are a lot of safety concerns associated with bathing the person that you care for, here are some tips for safe bathing:

Check that the floor is not slippery. Think about using non-slip mats if necessary.
Make sure that the room is warm before the person undresses. Older people are more sensitive to heat and cold than younger people.
Make sure that any blinds or curtains are closed and that no-one else is likely to walk into the bathroom.
Try to make sure that you will not be disturbed or distracted and will not have to leave the person alone.
Check that the water temperature is not too hot or too cold. You can buy a heat sensor that sticks to the side of the bath and changes colour if the bath water is too hot, to prevent scalding.
Don’t leave cleaning products where the person with dementia might get to them. The person may not be able to recognise them and may not understand the dangers they present.
Don’t forget your own safety. If you have to help the person get into the bath, make sure you don’t strain your back. If this is becoming a problem, talk to an Occupational Therapist about equipment to help you.

An Occupational Therapist may suggest some of the following pieces of equipment that could help:

grab rails to help with getting in and out of the bath
handrails, which can be attached to the wall near the shower, washbasin or toilet
non-slip mats for the bath or shower
seats to go in the bath or shower
raised toilet seats or commodes.

You can also visit the research site for the university of Stirling and find out more about their studies in to dementia-friendly environments

Assistive Technology

Assistive Technology (AT) are pieces of equipment and technology, designed to keep the person that you support as independent as possible. There are many different types of Assistive Technology from memo minders that can announce a pre-recorded message when passing a beam to remind you to do something i.e. “don’t forget to take your keys with you when you leave the house” to items that can help around the home and/or whilst out and about. If you have access to an Occupational Therapist or a Social Worker they will be able to give you advice on having an Assessment to see if you meet the criteria.

When someone you support has been diagnosed with dementia, finding the right level of equipment needed to help overcome some issues can sometimes be a little daunting. Whether you live in Coventry or Warwickshire, there is support available to help you with this process and further details can be found in the links in this page.

Dementia adviser service

If your are affected by dementia, dementia advisers can give you the information, advice and guidance you need. This could be of help during your diagnosis, or later on. Together with a dementia adviser, you will talk through your needs and plan how they will be met. This will include advice and guidance on local services. This will give you information to help you make informed decisions. You can contact your dementia adviser as often or as little as you want, either in person or on the phone to make sure you get the right support at the right time for you.

Health services

Health services that care for people with dementia include GP’s, old age psychiatrists, mental health nurses, community nurses, health visitors and Physiotherapists.

Social services

Social services can arrange a community care Assessment for people with dementia to assess the specific needs they have and discuss how these may be met.

Patient support organisations

The Alzheimer’s Society and Alzheimer's can provide a range of support to both people with dementia and their Carers. Other patient support organisations include Age UK and the Princess Royal Trust for Carers

Pension and employment

The Pensions Service and Citizens Advice Bureau can advise people with dementia and their Carers on employment legislation, social security benefits and housing rights.

Legal issues

Office of the Public Guardian (in England, Scotland and Wales), and the Office of Care and protection (in Northern Ireland) can advise people with dementia to appoint people to manage their property or investments.

Living with dementia and caring for someone with the condition can be difficult and emotional. Do speak to your doctor and local patient support organisations to find out what services are available to support you.

Advocacy

Advocacy is taking action to help people to say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy schemes work in partnership with the people they support and take their side. Advocacy promotes social inclusion, equality and social justice.

Direct Payments

A Direct Payment gives you, as an individual, greater choice and control over how you choose to live your life. It enables you to make your own decisions about how you organise your care arrangements.

Domiciliary Care

Domiciliary Care can help people with personal care and some of the practical household tasks that help them to stay at home and be as independent as possible.

There are many types of domiciliary care to support people who have different needs for ongoing help, short term help, or help from time-to-time. You may need regular care, need short-term care after being in hospital, or pehaps you have an illness or disability that means you need help occasionally.

Domiciliary care agencies provide care services to support people in their own homes, they do not give specialist nursing care.

Respite Care/Short Breaks

Carers sometimes need a break and this can be provided in several ways. You may wish to go into a care home yourself for a week or two; or arrange home-based respite care where another Carer moves into your ome; or family-based respite care where you move into another family's home for a period. The best option for you will depend on your needs, the urgency of the situation and personal choice and cost.

Residential Care

Care Homes offer accommodation, food and care, and there is always someone on hand to give help 24 hours a day. You can expect the level of personal care that a competent, caring relative might give you in your own home. Homes can range from hotel type establishments that suit people who are fairly independent, to Homes that care for residents who are frail, confused or very disabled.

Nursing Care

Care Homes with Nursing offer nursing care for either physical and/or mental health care needs and must employ qualified nursing staff 24 hours a day. You can expect these Homes to offer short-term convalescent and post-operative care as well as long-term nursing care.