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

    “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.”


    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.


    1 Audit Commission,
    Forget Me Not: mental health services for older people,
    January 2000. See

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

    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
    • For details of the charity For Dementia and the Admiral Nurses,
    • Alzheimer’s Society website: lO
      Mashta, “The truth helps”, Nursing Standard, Vol 13, No 12, 9
      December, 1998.

    Contact details

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