Advice for relatives and friends

Having a friend or relative with memory problems can be frustrating and worrying. It is important to strike a balance between ensuring safety and maintaining as much independence as possible. Those around the person with memory loss should try to be flexible and patient, and encourage them to remember what they can without making them feel pressured − using frequent reminders and doing
things with them rather than for them.

It can also be helpful to remember that supporting someone with dementia and learning to adjust to the changes this condition brings can be challenging. It is likely that you are not going to be able to get it “right” all of the time. Try not to feel guilty about this – you are only human.

Taking in new information
People with memory problems often find it very hard to absorb and remember new information. For some people with dementia, the part of the brain that allows new information to be processed may be damaged. Their brain does not retain what it has been given, which often leaves people feeling that this is the first time they have heard something, even when it may have been repeated several times.

• Keep information simple and repeat it frequently
• Break new activities down into small steps

Avoid stress
Stress can make it more difficult for the person to remember things. Stress can be reduced by:

• Making sure they have plenty of support
• Helping them to concentrate on one thing at a time
• Trying to make sure that there are no distractions, such as background noise or lots of people
• Providing verbal cues rather than asking questions that might make the person feel ‘put on the
• spot’. For example, say: ‘Look − here’s David, your nephew, who has come to see you’, rather
• than ‘Do you remember who this is?’
• Making sure the person gets enough exercise, which helps reduce pent-up tension

If you think that the person seems highly anxious or depressed, consult their GP.

Put a regular routine in place
Although variety and stimulation are important, too many changes can be confusing for a person with dementia.

Setting up a regular routine will help someone feel more secure, and will make it easier to remember what usually happens during the day. It is also a good idea to leave things in the same place, so that they can be found more easily.

Make the most of memory aids
In the early stages of dementia, memory aids such as lists, diaries and clear, written instructions can help jog the person’s memory if they are willing and able to make use of them. For ideas see our Living well page. As the dementia progresses, the person may become less able to understand what the aids are for.

Coping with memories of the distant past
Most people with dementia remember the distant past more clearly than recent events. Talking about the past can be enjoyable for the person with dementia and those around them, and may help the person retain their sense of who they are.

Sometimes, a person with dementia may seem to be living in the past and insist, for example, that they have to wait for their mother to take them to school. If this happens, those around them should try to relate to what the person is remembering or feeling, rather than contradicting what is being said. Not all memories are happy ones. If the person seems very upset by certain memories from the past, they will need the chance to express their feelings, and to feel that they are understood. If they seem sad, it can help to encourage them to talk about it and offer comfort, rather than changing the subject.

If you feel that your loved one needs more specialist support please let us or your GP know.

Fact versus fiction
As dementia progresses, the person may sometimes confuse fact with things they have imagined. If this happens, try to focus on the feelings they are trying to express, rather than correcting the detail. For example, if they think their bag has been stolen when actually they have just put it somewhere and forgotten, this may indicate feelings of anxiety or insecurity. Try to understand the emotions the person
is expressing rather than focusing on the ‘truth’ of their statement.

There may be some instances where it is important to contradict or correct what the person with dementia is saying − for example, if they incorrectly accuse someone of something. In this case, it must be done sensitively, in a way that saves face and does not seem critical.

Sometimes increased confusion in people with dementia can be due to an underlying infection such as urinary tract infection (UTI). If you suspect that this may be the case, it is advisable that you encourage your friend or relative to visit their GP.

Supporting your loved one to live well with dementia
It’s important for people with dementia to continue to maintain as full and healthy lives as possible. Keeping active is central to this, as it can help to reduce stress and lift mood. It can be difficult for someone with dementia as they may not be able to manage the tasks or hobbies they used to enjoy, they may have difficulty getting themselves organised to get out and about and their level of motivation may also be affected. It’s also important to support the person to live an autonomous and independent life. Involving them in certain activities such as washing up or gardening even if its unnecessary, helps to
make the person feel valued.

Our Living well page contains a list of activities your loved one might like to try. Of course not everything on the list will appeal to everyone, but we hope they give you some new ideas to try.

Barbra Pointon, an author who cared for someone with dementia, wrote ‘Eight care giving maxims for dealing with perplexing behaviours’ (2001), some helpful tips in thinking about how we interact and respond to people with dementia:

• Don’t try and stop someone with dementia from doing something just because it isn’t being done properly. Give them time to do things in their own way at their own pace.
• People with dementia understand far more than they are ever given credit for. Take care what is said in their presence and don’t exclude them from conversations or decisions.
• Bossiness is just not on. It is very easy to confuse caring with controlling and nothing winds any one of us up more than the sense that someone else is controlling our lives. And if someone can’t find the words to protest, then resistance or aggressive actions will ensue.
• Ask the question, “who is it a problem for – us or them?” If it is us, we should let things ride.
• Does it really matter that he wants to go to bed with his trousers on, doesn’t want to wash right now? Don’t scold, argue or contradict. Go with the flow, however bizarre it seems.
• Preserve their autonomy for as long as possible by giving them choice (e.g. in what clothes to wear) and celebrate what they can still do, rather than bemoan what they can’t.
• There is always a reason for agitation – often something or somebody in the environment. Try to spot the cause and change it if possible.
• If they can’t enter our world, we must enter theirs and affirm it. Enjoy fantastic adventures with them in their ‘real’ world instead. Be prepared to time travel backwards into their personal history.
• Look behind the illness and reach out to the frightened person still in there who needs to feel secure, respected and cherished.

When you’re caring for someone with dementia, it can be all too easy to ignore your own needs.

Looking after yourself is vital, not only because this enables you to provide the best possible support to your loved one, but also because your health and wellbeing are equally important. Remember that you are not only a ‘carer’, but someone with other important roles, relationships and interests. Try to maintain these as much as possible as these can be valuable sources of support in times of stress.

Congratulate yourself
At times, caring can feel like a thankless task. The person with dementia may no longer seem to appreciate your efforts, and others may be unaware of how much you do. Commend yourself from time to time for:

• managing to cope, day in, day out, with what might be a very difficult situation
• becoming ever more flexible and tolerant, and finding new strengths and skills that you did not know you possessed
• being there for someone who needs you.

Make time for yourself
Make sure you have some regular time to relax or do something just for you

• Put aside some time each day for yourself to do something you enjoy.
• Get out at least once a week to meet a friend or pursue your own interests.
• Take regular weekends away or short breaks to recharge your batteries.
• If the person you are caring for can’t be left alone, ask friends or family whether they could.
• pop in for a short time, or whether they could come and stay with the person for a few days.
• Find out what support services are available in your area, such as home care, day care or respite residential care, and what they cost. Social Services will be able to help you with this.

Take care of your health
Try to ensure that you maintain a healthy diet and lifestyle. Ensure you get enough sleep. If you have to help the person move around, make sure you minimise the risk of injury to yourself. If you are concerned about moving the person request a moving and handling assessment from your local
community therapists via the GP.

Your financial well-being
Your legal and financial situation may be affected if you are caring for a person with dementia.

• Make sure you and the person you are caring for are getting all the welfare benefits you are entitled to. If you have had to give up work because of caring, it is a good idea to ring a helpline or visit an advice centre to get a full benefit check (see our Practical things to consider after diagnosis page).
• Think about the best way to manage the financial affairs of the person with dementia when this becomes necessary. This may be through appointee ship or a Lasting Power of Attorney (again, see Practical things to consider after diagnosis).

Getting support
If you are caring for someone with dementia, be prepared for the fact that you will 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. When seeking support from services, be assertive. Make it clear that you cannot continue with your caring role
unless you receive the support that you need for yourself.

Each area has Dementia advisors who can give personalised support and advice for anyone affected by dementia and their carers and you can self refer via these phone numbers:

Alzheimer's Society: 0333 150 3456
Andover Mind: 01264 332297

Support from local services

As a carer you are entitled to an assessment of your needs. You can contact Social Services to arrange this. If
you are being assessed as a carer, prepare for the assessment carefully. Think about your role as a carer, how
you are managing, and what support you may need to continue. Think about the difficulties you have now,
and those you may experience in the long term if you continue caring at the same level. These may include:

• stress, depression or anxiety
• lack of sleep
• struggling to negotiate work and care commitments
• lacking time for the other interests in your life
• fatigue due to long hours spent caring and lack of breaks
• difficulty maintaining relationships with your family and friends
• inability to plan for the future for yourself and/or the person you’re caring for
• no contingency for emergencies, such as if you are ill
• if someone else could help you in the tasks that you do, would you have more time to look after
• the person you’re caring for and/or yourself
• lack of practical skills such as being able to drive, or knowing how to lift properly.

Then, think about what would help you to cope. Solutions may include befriending, training, counselling, adaptations to the home and respite care. The local authorities may charge for some of these services, taking your income into account.

Support groups
A lot of carers can feel very socially isolated, which can lead to a loss of confi dence. For this reason it can be enormously helpful to meet with others who are going through similar experiences. Carers groups can be a great source of emotional support as well as a place to learn from others. Speak to the Clinician working with you to discover what local carer support groups you might benefit from.

Mental health support
If you are experiencing symptoms of anxiety or depression let your GP know. There are many treatment options available and it is important that you seek help. Common symptoms of depression include:

• Feeling down or sad much of the time
• Losing interest in things you used to enjoy
• Feeling hopeless about the future
• Lack of energy or motivation
• Changes in appetite or sleep
• Common symptoms of anxiety include:
• Feeling tense or panicky
• Frequent worrying thoughts
• Avoiding things you used to do
• Difficulties sleeping

Carers UK provide information and advice to carers about their rights and how to access support.

Contact them at: Carers UK 20 Great Dover Street, London SE1 4LX
Tel: 0808 808 7777 (Advice line) Email: info@carersuk.org Website: www.carersuk.org

The Surrey and Borders website also has a lot of advice and information about carers.

Respite
For information on Care Homes or Respite Care please contact your local Social Services, or Community Mental Health Team Older People Young Onset Dementia service in your local area.

Holidays & Breaks Away
Dementia Adventure www.dementiaadventure.co.uk
Crossroads Care www.crossroadscaresurrey.org.uk

Young Carers
If you are young and trying to understand more about what Dementia is or ways to support someone who has Dementia, Alzheimer Research has a useful website: www.kids.alzheimersresearchuk.org

Action for Carers has a useful website with lots of ideas for support.

Carers Emergency Card

Carers Emergency Card
Carers often worry about what will happen to the person they care for if they themselves are taken ill or are unable to continue caring.

Surrey County Council registers the details of people who would not be able to manage on their own if their carer suddenly became incapacitated or unable to care due to a family emergency. Once registered, the carer is given a Carers Emergency card, which can be handed to the Emergency Services or a health professional to alert them that there are other people to consider when treating the carer.

To register your details and those of the person you care for, please contact Surrey County Council direct on 0345 009009.

For Hampshire Council call: 0300 555 1386 or visit:
www.hants.gov.uk/socialcareandhealth/adultsocialcare/supportforcarers