Jim: We meet and we talk about it and I suppose that itself is an advantage.
Brenda: They take the mickey out of each other and crack jokes, they're just so relaxed and
comfortable with it. Ann: I had great trouble getting him out to
start with, he wouldn't go anywhere. But now that he's joined all these different things
he has this support worker from the Alzheimer's in Salisbury and she's very good. She comes
along once a week and she'll get him to go out. She takes him out to places and they'll
go and have a coffee in the garden centre or something. So he gets more of an active
life now than he was having. Alex Clay: A diagnosis of dementia can be
daunting and raises many questions about the future. Asking for help can feel difficult,
particularly if you've always been independent. You might not feel you need it straight away
but it can be useful to know that a wide range of information and support is available to
help you live well and stay independent for as long as possible.
The main sources of information and support are the NHS, Social Services, private companies
and charities and not -for-profit organisations. To find services in your area, start by contacting
your local memory service. Social Services Department, GP, Alzheimer's Society or Citizen's
Advice Bureau. Organisations such as Alzheimer's Society can support people with dementia,
their families and carers in a range of ways. These include dementia support workers, and
support groups. Telephone helplines and information materials. Lots of different healthcare professionals
can support you too, such as, community nurses, dieticians and occupational therapists who
help people maintain everyday skills. Social care professionals such as social workers
and home carers can also offer advice. If you need support at home, the first step
is to ask social services for a community care assessment. Sometimes called a care assessment
or needs assessment. This aims to find ways to help you maintain your independence and
quality of life and will involve a discussion between you and someone from social services.
You might also be asked to fill in a questionnaire which they can help you with if you need them
to. To arrange a community care assessment you
or a relative or friend can contact social services directly. Alternatively, a GP, consultant
or other professional involved in your care can make a referral. Assessment information
and advice are always free. Social services will appoint someone, usually a social worker,
to be responsible for planning your care and support. He or she will draw up a written
care and support plan that looks at how they can meet your needs.
They may charge you for some services, or they may cover the costs possibly in the form
of a personal budget or direct payment. This is money from the local authority that you
use to pay for your care and support. If you have been diagnosed with dementia and
are in your 40s, 50s or early 60s, you will have very different interests, care and support
needs from someone diagnosed in their 80s or 90s. For example, younger people are more
likely to be working or have a partner who is or have dependent children, or possibly
dependent parents and still have a mortgage. The number of services suitable for younger
people is growing, but progress is slow and services may not be available in your local
area. Ask your memory clinic, your consultant, GP, your local social services about support
and services for younger people with dementia. Contact Alzheimer's Society about putting
you, your family or carers in contact with others in your local area, all in similar
circumstances. Alzheimer's Society online discussion Talking Point, includes a section
for younger people with dementia and their carers which might also be useful.
You might also find it helpful to visit websites and subscribe to newsletters that support
people with a particular type of dementia. To find out more about services for people
with dementia visit alzheimers.org.uk/supportservices
Caring for a supporting someone with dementia can be stressful and at times upsetting. It
can also be very rewarding. It is important that you look after your own health and wellbeing
and turn to others for support when you need it.
Ann: Alzheimer's had a fantastic course for carers which I did almost immediately after
he was diagnosed. They did one on finance, and one on legal stuff and then they had all
sorts of different subjects. That was brilliant because they taught you a lot but you could
also ask questions. They also had a legal advisor come along and talk to you and a financial
person come along. Any questions that you had were answered there. And if you didn't
have a question at the time you could always go in a few weeks later and they'd find out
for you. So it was absolutely brilliant. Alex Clay: Everyone is different but you might
find yourself experiencing a range of emotions at different times. Try and take time to reflect
on how you're feeling and talk to someone you trust. You might choose a professional,
a friend, or family member or someone at a carer support group. If you use the internet
you could try an online discussion and support forum like Talking Point. Getting support
will make it easier for you to cope and better for the person you care for.
Sources of support for carers include family and friends, health and social care professionals,
memory services, carer support groups and organisations such as Alzheimer's Society.
Looking after your own health and wellbeing is vital when you're a carer. It is important
to make sure that you eat a balanced diet and to make time for regular exercise and
physical activity, even going for a walk can help.
Make sure you see your GP about your own health on a regular basis. If you're having problems
sleeping, ask them for advice. If you feel sad or anxious a lot of the time, talk to
them about it as early as possible as these could be signs of depression. Try to make
sure you have some regular time to relax or do something just for yourself. This can have
a big impact on your wellbeing. Try to get out regularly to meet friends. If possible,
consider an outing or short break which can relieve stress and leave you feeling refreshed.
Find out about day care or respite support for the person you care for. So that you can
take time out knowing they are well looked after.
Jim: It's a help to anybody with any problem. You've got to realise what they are like as
people haven't you? So one line of help will be more beneficial say to you, than it would
to our friend there. Alex Clay: Much of how you care for the person
will come naturally. You will probably know the person the best and you shouldn't underestimate
the value you can bring to their care. It is important to continue to see the person
and not just their dementia. When you help out, focus on what they can do rather than
on what they can't. For example, lay clothes out for someone to dress themselves which
will help to promote their independence. They may find it hard to remember or concentrate
on things. So try to be flexible, tolerant and patient. Allow extra time to do things.
Put yourself in their shoes. Try to understand how they might be feeling and how they might
want to be cared for. Include them in conversations and activities as much as possible. And make
sure they have meaningful things to do. From every day chores to leisure activities or
socialising. Find things to do together if you can. Dementia will affect a person's ability
to communicate. In most types of dementia people will at times struggle to find the
right words or follow a conversation. This can be upsetting and frustrating for both
you as a carer and the person with dementia. Ensure that you make eye contact and listen
as carefully as you can. Notice your body language and think about how you use gestures,
facial expressions and touch. Try to speak clearly and if you aren't being understood,
use simpler words or explain things differently. Bear in mind that other things and not just
dementia can affect communication. Like hearing or eyesight problems, pain or side effects
of medication. If it feels right, it can sometimes help to deal with misunderstandings and mistakes
using humour. But you will need to judge how the person responds to this.
At times people with dementia behave differently from how they used to. Some behaviours can
be particularly unusual or challenging. Behaviours which might seem unusual include asking the
same question, or repeating an action over and over, restlessness like pacing or fidgeting,
lack of inhibition, such as socially inappropriate behaviour in public, and thinking someone
has taken something belonging to them when they've actually mislaid it.
More challenging behaviours include the person becoming very agitated or shouting out. Perhaps
in a response to a hallucination. The person may also be physically or verbally aggressive.
While it can be very difficult, it's best to deal with any potentially tense situations
as calmly as you can. Keep in mind that even where behaviour appears to be targeted at
you, this may be just because you are there. Symptoms might be caused by a curable health
problem such as pain, or discomfort due to constipation or an infection. See your GP
if you suspect this might be the cause. Sometimes the behaviour is really the person
trying to communicate an unmet need. For example, that they are bored or frustrated. If problematic
behaviour persists or causes distress, seek advice and support from your GP, memory service,
community mental health nurse or Admiral Nurse who are mental health nurses who specialise
in dementia. If the behaviour persists and you are not
in contact with a dementia specialist, ask for a referral. Sometimes the doctor might
suggest medication, this may be one of the drugs mentioned in the treatments film. If
these do not help your doctor may recommend an anti-psychotic drug. If so, talk to the
doctor about the benefits and risks. These drugs don't work for everyone and can have
serious side effects. To find out more about support for carers, visit alzheimers.org.uk/carers
Alzheimer's Society is the UK's leading support and research charity for people with dementia,
their families and carers. We provide a range of services and resources to support people
affected by dementia. We have national services that are available wherever you live in England,
Wales and Northern Ireland. These include the National Dementia Helpline, Talking Point,
an online discussion forum, and our range of information resources for people affected
by dementia, as well as health and social care professionals.
We also offer services locally. These vary depending on where you live and where funding
is available. Services include Dementia Advisers, dementia support workers, Dementia Cafés,
Singing for the Brain activities, support groups for people with dementia and support
groups for carers. Also available are advocacy services, day care and home care and the carer
information and support programme. To find out more about our services, please phone
the National Dementia Helpline on 0300 222 1122 or visit alzheimers.org.uk