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If you are a carer there
are a number of things that can be done in the short-term immediately
after diagnosis. Other actions and decisions will have to be made as the
disease progresses. Below are two checklists, one for the short-term and
one for the longer-term, outlining what the carer can do to help.
Stage 9 - Helping the patient and carer
in the short term
You may wish to consider
the following:
Contacting Social Services
If they have not already been contacted on
your behalf in order to gain access to all the services described in Stage
8 .
Work
If the patient is still working,
this will probably be very stressful. It is important to tell
the employer what is happening early on. It may be possible
to switch to a less demanding job or gradually decrease the
hours worked. The patient will need to think about leaving
work fairly soon because of problems such as increased difficulties
and decreased concentration which are symptoms of the disease.
It is also important to consult an expert about the patient's
pension in this situation.
Claiming Benefits
You and the patient may be eligible
for one or more benefits. As a minimum, attendance allowance
or the disability living allowance - care component, should
be claimed by all people with dementia and carers should check
their entitlement to invalid care allowance. If you are in
any doubt about your eligibility for a particular benefit,
it is best to claim and let the Benefits Agency decide. Your
local Citizen's Advice bureau will also be able to help.
Contacting Local and National Voluntary Organisations
They can provide a wide range of
information and support. It can be helpful to find out more
about dementia so that the future can be prepared for. Local
organisations may run support groups, day centres, lunch clubs
and sitting schemes.
Making Financial and Legal Arrangements
Arrangements have to be made early
on to allow the carer to take over these responsibilities
because, as dementia progresses, the patient will become less
able to make decisions about their own financial affairs.
Some arrangements can be informal but there are also a number
of procedures and safeguards that may prove helpful, for example
Enduring Power of Attorney . Contact your local Alzheimer’s
Society for details of the arrangements that can be made.
Making a Will
This needs to be done as soon as possible
before the disease progresses. If a person doesn’t make a wil,l their
affairs will be more complicated, take longer to sort out and more tax
than necessary may be paid by the beneficiaries.
Driving
It is dangerous for dementia patients
to drive, even in the early stages of the disease. They become
a hazard on the roads because their judgement is impaired
and their reactions slowed. The DVLC needs to be informed
if someone is diagnosed with dementia. The diagnosis may also
affect their insurance.
Telling Your Friends and Family
It is important that friends and
family know that the patient is ill. This will allow them
to understand the changes that the patient and carer are experiencing
and be on hand to give help and support.
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Stage 10 - Helping the carer
and patient in the long term
As the disease becomes more advanced
the patient will need more intensive care. The carer needs
to consider the impact of this on their own lives. Caring
can be very stressful. Below are outlined ways in which the
carer can help themselves cope.
Accept help from friends
This will take some of the burden
off your shoulders and allow your friends to do something
positive to help. The more help that a carer accepts the longer
they will be able to care for the patient themselves.
Get help from the community team and voluntary organisations
As the disease progresses, the patient
will have more problems managing the activities of daily living
such as dressing, bathing and eating. In addition behavioural
problems such as repetition, wandering and hallucinations
may become difficult to cope with. The community team and
voluntary organisations can help by giving practical advice
and help on how to deal with the situations that arise.
Remain healthy and keep up your activities
It is important that as a carer
you take care of your own health. If you are feeling unwell
or under the weather you will be less able to cope with what
the disease will throw at you. As far as possible continue
to do the activities you have always done, this way you will
get a breather, retain a social life and retain your sense
of self.
Take a holiday
Carers need regular holidays in
order to relax and recharge their batteries. You need to think
about whether you will go away with the patient or need the
time for yourself. A friend may be able to help you care for
the patient whilst you are away or you may be able to arrange
respite (short-term) care in a local home or hospital. The
community team or voluntary organisations will be able to
help you find somewhere suitable.
Consider future living arrangements
Although everyone may cope well
for a long time, a time may come when you can no longer manage.
Try to find out in advance what kind of services may be available
and talk through the alternatives with people who have experience
in the field. You will then be able to take appropriate steps
before a crisis occurs and have time to come to terms with
what can be a very upsetting decision.
The organisations
listed in the Dementia Links
and Resources section will be able to help with information and advice
on all these issues. You
will also find excellent information resources at the web sites to which
we provide links. If
you prefer your reading in book form, our book
list offers some recommended titles. We
have also introduced a page for Carers'
Hints for suggestions passed on to us by carers.
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