Be honest with me

Joanna Pearl is a service development officer for
Hounslow social services in Greater London. She leads on
departmental transport, and quality assurance in learning
disability services. As a social worker she developed an interest
in working with people with dementia. She volunteers for a domestic
violence helpline and is a workplace mediator.

Dealing sensitively with people with dementia and their carers
is a difficult issue for many professionals. People often don’t ask
for advice or approach services until the disease is relatively
advanced, and dementia can take six to 10 months to diagnose. And,
possibly because the news can be so difficult for the person and
their family to hear, some consultants are reluctant to confirm the
existence or even the type of dementia. This can mean people
experience a protracted period of distressing uncertainty.

However, new drug and psychological treatments are starting to make
a difference. People are seeking medical help earlier and
professionals are more willing to tell people their diagnosis
because they have some hope to offer. These advances also mean
people with dementia can articulate their views on how knowing the
diagnosis makes a difference.

So what is important when dealing with a diagnosis of dementia?
Debbie Hawkins is an admiral nurse, one of a group of specialist
nurses supported by the charity For Dementia to work with carers of
people with the condition and professionals. She says the
importance of how someone is told is paramount. “It is still not
always done sensitively. “There is a reluctance to tell,
particularly from GPs. People are fobbed off.”

This is not surprising considering that an Audit Commission survey
about mental health services for older people found that less than
half of GPs felt that they had received enough training to diagnose
and manage dementia.¹

Some people will make the decision that they do not want to know
the details or even the diagnosis itself. But for those who do want
the truth, a post-diagnosis safety net of information and support
is essential. Research in 2001 explored the views of 24 people with
dementia.² It found that knowing the diagnosis enabled
both the person and their family to plan, to access appropriate
support and services, to make the most of the remaining time and to
develop coping skills.

But information and support services need to be easily accessible
and sensitive to people’s immediate needs. Julia Jefferson is
project officer of the Dementia Advice and Support Service (Dass)
in Nottingham. Established in April 2001, it is based at the
Alzheimer’s Society and has seen more than 160 clients. She feels
that an advantage of this project is the time it can offer. “People
react to a diagnosis completely differently,” she says. “People may
have little support afterwards, and many don’t ring the dementia
service numbers they’re given because it’s almost like
acknowledging that the diagnosis is true.

“What’s needed is someone who will see you immediately and give the
information wanted at that time – someone who has time to sit with
people while they cry, or be at the end of a phone.”

It is this long-term relationship and time that can be missing in
the “allocate, assess, implement, close” cycle of a busy social
work team. Good liaison is needed to bridge potential gaps between
teams and sectors, from community mental health teams to memory
clinics to specialist services, through to the social work teams
that assess clients’ needs for future services.

Social services departments need to respond to initial enquiries
from people with dementia with skill and sensitivity, rather than
rigidly apply eligibility criteria. Regular dementia forums with
appealing topics can attract workers, who can receive updates and
information simultaneously.

Dass has been working with GPs, encouraging joint working and
raising awareness of the needs of people with dementia and carers.
Jefferson says services need to involve people with dementia as
partners rather than passive recipients, possibly by including
people with dementia in consultation, recruitment, policy-making or
training. She also believes there needs to be more research on how
to better support people and their families after diagnosis.

Couple look to future with hope

Retired teacher Betty lives with husband Arthur. Betty has seen
other relatives die from Alzheimer’s disease and two years ago she
was told she had the condition.

Arthur and Betty feel it is vital to get the right support to
plan ahead, although it is impossible to predict how Betty’s
illness will develop. She says: “I know the future doesn’t need to
be dreadful. We’ve been to see a local home. It was lovely. We’ve
had a social worker round so that they know who we are if anything
happens to Arthur. Our outreach worker visits regularly and
suggests things.”

Betty’s open attitude allowed her friends to accept her
diagnosis and offer support. “When I first told my pals it took
them ages to believe it. At first they said ‘pull yourself
together, think a bit harder’. Now, they help me with things like
shopping for clothes.”

Making joint decisions with Arthur has also helped Betty cope.
“I went to the supermarket recently and was having a rotten day. I
just panicked. I was so frightened I ran all the way home in the
rain. I felt like it was the end of my life. We’ve decided I
shouldn’t go out alone anymore. We’ve also decided that it’s better
for me to stop driving after 60 years.”

Arthur and Betty do not deny the difficulties of the changes in
Betty’s character and their relationship, but emphasise their
capacity for looking forward and for fun – when they meet other
people with dementia and carers at weekly meetings, or take on the
medics.

“Being in company brings out the best in me,” says Betty. “I can
talk to the doctors as if there’s nothing wrong with me. They ask
the same [mini-mental test] questions every time so we can swot up
on the answers! My nephew said ‘there’s nothing wrong with her’ –
it’s really rather lovely.”

Abstract

The article finds that people with dementia are not consistently
given their diagnosis or the information and support they need
afterwards. Knowing the diagnosis can have huge benefits for
patients and carers in decision-making, planning and quality of
life. Organisations have developed good practice models of social
support and information after diagnosis, and involved staff and
service users in high-quality dementia service development.

References

¹ Audit Commission,
Forget Me Not: mental health services for older people,
January 2000. See
www.audit-commission.gov.uk

² Rebekah Pratt and Heather
Wilkinson, Tell me the Truth: The effect of being told the
diagnosis of dementia, University of Stirling. July
2001.

Further information

• Dass UK is a Mental Health Foundation initiative. It aims to
  meet the needs of people in the early stages of dementia and their
  carers. See www.mhilli.org/dass/dassproject.htm
• For details of the charity For Dementia and the Admiral Nurses,
  see www.fordementia.org.uk
• Alzheimer’s Society website: www.alzheimers.org.uk lO
  Mashta, “The truth helps”, Nursing Standard, Vol 13, No 12, 9
  December, 1998.

Contact details

The author can be contacted at Joanna.pearl@hounslow.gov.uk.