Communicating
the Diagnosis
Background
A
diagnosis of Alzheimer's disease or a related dementia
may take a long time. People experience different symptoms.
One person may have memory problems, another may have
language difficulties, or changes in personality or behaviour.
Also, some people may not be aware or may not let others
know that they are having difficulties. It takes time
to conduct a thorough assessment to determine if a person's
symptoms are caused by Alzheimer's disease.
The
issues
For
people with Alzheimer's disease:
The
right to know: People with Alzheimer's disease are
often not told their diagnosis. Withholding this information
may prevent the person from:
- receiving
treatment for symptoms;
- understanding
the cause of the symptoms;
- learning
more about their diagnosed condition;
- seeking
and obtaining support and practical help;
- planning
for the future.
People
with advanced symptoms of the disease may not understand
the diagnosis or its implications but the information
will be useful and necessary to family members.
For
family members and caregivers:
Protecting
the person by withholding information: Family members
are often uncertain how the person will react to the
information. They often fear the person will not be
able to cope with the diagnosis or may harm themselves.
These concerns may cause them to ask the person's physician
to withhold the diagnosis.
For
health-care professionals:
Protecting
the person by withholding information: Many doctors
consider communicating the diagnosis of Alzheimer's disease
as one of their most difficult tasks. They may fear
that delivery of the news will jeopardize their relationship
with the person. Or they may find themselves in a situation
where some family members want to tell the person the
diagnosis and others do not. Also, they may choose
to withhold the diagnosis, out of fear that the person
may not be able to cope.
Preferred
choice
Sensitive
communication of the diagnosis
People
with Alzheimer's disease and their families need to be
informed sensitively about the diagnosis. This includes
providing them with information about:
- how
the disease will affect the person in the future;
- what
treatment options are available;
- where
to find support.
This
will help individuals and families understand better
the reasons for the changes the person is experiencing,
the progression of the disease and the need to plan for
the future. This planning can include:
- discussion
of the person's future health-care wishes;
- arrangements
for the management of financial and personal affairs;
- honest
and open discussion of the person's experience;
- proper
consideration of treatment and support options, such
as medications, community programs, support groups,
counselling and education programs.
If
a person has explicitly expressed the wish to the doctor
and family members not to know the cause of the symptoms,
the request should be honoured.
How
might the diagnosis be communicated?
Because
of the time it takes to complete an assessment, doctors
and members of the health-care team have an opportunity
to use this time to set the stage for communicating the
diagnosis.
Early
in the assessment, people who will be present when the
person is told the diagnosis can be identified. For some
people, this may be a spouse, adult child or a good friend.
Some people may prefer to go alone, however, they should
be encouraged to bring with them someone who can help
understand, record and remember what is being said. Once
identified, these people and the person who is being
diagnosed can be informed of the assessment process and
the possible reactions to the diagnosis. Issues can be
identified and a plan put in place for the time when
the person will be told the diagnosis. This plan might
include who will be present, and where and when the communication
of the diagnosis will take place.
The
communication of the diagnosis might occur in a doctor's
or specialist's office, or in a specialized clinic setting.
If a team of health-care professionals was involved in
determining the diagnosis, the family meeting should
include members of that team, but not too many people.
Where possible, the doctor whom the individual and family
view as the most credible source of information should
be the one to share the news of the diagnosis.
The
doctor should take into account the individual's and
family's prior knowledge and how they perceive the problems.
The doctor also needs to be aware of the impact the diagnosis
can have on the person and family relationships.
The
diagnosis should be communicated directly to the person
with the disease, allowing sufficient time for the doctor
to answer questions and address concerns. Communication
will be aided by:
- making
sure the environment is as quiet as possible;
- making
eye contact, for example, by sitting facing the person;
- speaking
slowly and clearly, using simple words and short sentences;
- giving
one message at a time, and not including too many thoughts
or ideas at once;
- taking
time for the person to understand the information and
respond to it.
A
written summary of the issues discussed during the communication
of the diagnosis can be useful because people may not
understand all of the information nor remember the details.
After
communicating the diagnosis
Not
all information can be absorbed during the first meeting,
so follow-up sessions are recommended. These sessions
can be used to discuss the diagnosis further, talk about
its implications, and provide advice about available
treatment and support options. People with Alzheimer's disease and their families are encouraged to write down
any questions they may have for future doctor's appointments.
Communication
of the diagnosis may be met with different responses
from the person with the disease and family members.
Responses may include: this is what was suspected all
along; relief at learning that Alzheimer's disease could
account for the changes; depression; anger; denial.
As
a result of the communication of the diagnosis, the person
and family should come to understand that:
- The
diagnosis does not change who the person is. The individual
is still the same person as before receiving the diagnosis.
- Cognitive
problems, such as, problems with memory, concentration,
language and judgment, are not normal. They are the
result of changes in the way the brain functions.
- While
Alzheimer's disease cannot be cured, treatment options
are available. Also, changes to the person's environment
may assist the person in adapting to changing or lost
abilities.
- Expectations
for the future are uncertain, so future plans should
be discussed as soon as possible after the diagnosis.
- The
person with Alzheimer's disease and family are not alone.
Support programs are available to assist people with
the disease, their family members and caregivers. These
programs include support groups, telephone support
and programs that provide respite or relief. People
can contact their local
Alzheimer Society for information about support
programs in their community.
- There
are health-care professionals who are knowledgeable
about Alzheimer's disease and can provide help throughout
the course of the illness.
- Referral
to specialized services and programs may be appropriate
for symptom management, support, participation in research
or genetic testing (if the family history warrants
it).
Once
the diagnosis has been communicated, it will take time
to come to terms with it. Sharing the diagnosis with
family and friends with whom one is comfortable can assist
in widening the circle of support.
If
the diagnosis is mild cognitive impairment
For
people with mild cognitive impairment (usually just memory
problems), an Alzheimer diagnosis may not be immediately
possible. Nevertheless, people with mild cognitive impairment
are at an increased risk of having further cognitive
problems and of developing Alzheimer's disease in the future.
Regular follow-ups are important to ensure that an accurate
diagnosis can be made.
In
closing...
Communicating
a diagnosis like Alzheimer's disease is difficult even
for the most experienced doctor. For family, fear that
the sharing of such a diagnosis will have devastating
effects on the individual may prevent the communication
of the diagnosis from happening. Despite these concerns,
it is vital that people with Alzheimer's disease and their
families be sensitively informed about the diagnosis.
They should also be reassured that, whatever changes
the disease process may cause, the individual is still
the same person inside. Knowledge of the diagnosis will
help people be directed to appropriate treatment, care
and support, and develop plans for the future.
Resources:
From
the Alzheimer Society of Canada:
- Getting
a Diagnosis: Finding Out If It Is Alzheimer Disease
Other:
- Canadian
Consensus Conference on Dementia (abstract only). Canadian
Journal of Neurological Sciences 2001;28 (Supplement
1).
- The
Recognition and Management of Dementing Disorders:
Conclusions from the Canadian Consensus Conference
on Dementia. Christopher Patterson, Serge Gauthier,
Howard Bergman, et al., Canadian Medical Association
Journal 1999;160 (Supplement 12).
[To view this PDF file, you need  Adobe Reader, available free from the Adobe website.]
- Understanding
Dementia: A Primer of Diagnosis and Management.
Kenneth Rockwood and Chris MacKnight, Pottersfield
Press Ltd., 2001.
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