Health monitoring for family carers

QUICK REFERENCE GUIDE
Alzheimer’s disease and related conditions:
Health monitoring for family carers
February 2010
KEY MESSAGES
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To offer an annual consultation to the family carer of a person with Alzheimer’s disease or a related
condition.
To pay special attention to the carer’s mental health, nutritional status and level of physical and mental
autonomy.
To look for any distress, anxiety and/or depressive disorders, sleeping problems, taking account of the
family, social and cultural context.
To check that the needs of both the family carer and the patient are met and the necessary resources
made available (medical, social and financial support).
Definition of family carers
So-called family or informal carers are non-professionals who are the main source of support, whether fully
or partly, for a person dependent on family and friends for the activities of daily living. This regular help may
or may not be given on a permanent basis, and can take a number of forms such as nursing, personal care,
support in the patient’s social life and in maintaining autonomy, administrative matters, coordination,
permanent supervision, psychological support, communications, domestic activities, etc.1
One or more carers may need to work as a team or take over from each other to care for a person suffering
from Alzheimer’s disease or a related condition over the course of the illness.
Annual consultation offered to family carers
The annual consultation is time set aside specifically to focus on the health of the family carer, regardless of
his or her age, the objectives of which are to prevent, identify and manage any detrimental effects on health
that may result from his or her role as a carer.
The patient’s primary care doctor (PPCD) should suggest to the family carer to attend a special annual
consultation if the PPCD is also the carer's regular doctor. If this is not the case, the PPCD should suggest a
consultation with the carer's own primary care doctor and formalise the arrangement by giving him/her a
letter for the regular doctor, in accordance with the rules of medical ethics and confidentiality.
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According to the European Charter on Family Carers, 2009. COFACE Brussels
This annual consultation completes the standard review carried out every six months for patients with
Alzheimer’s disease or a related condition, which includes a medical assessment of carers and close family
members. A special consultation should be offered in cases of stress or ill-health reported in the family carer.
All health and welfare professionals involved in the management of a patient with Alzheimer’s disease or a
related condition should inform the PPCD of any stress, distress or deterioration in the state of health of any
family carer(s), in accordance with the rules of ethics.
The health of family carers should be monitored at different stages of the illness: when the diagnosis is
disclosed, when the patient is being cared for at home, upon admission to an institution, at the end of the
patient’s life, and during the period of mourning if necessary.
What the annual consultation covers
The annual consultation should include a general assessment of the health of the family carer, an
assessment of his or her “burden” on a medical, psychological and social level, together with screening for
any specific health problems associated with caring for a patient with Alzheimer’s disease or a related
condition.
This consultation provides the opportunity:
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to pay special attention to the carer’s mental health, his nutritional status, his level of physical
and mental autonomy;
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to check preventive aspects, such as vaccination programmes, scheduling of the usual
screening tests;
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to assess his or her cardiovascular, locomotor and sensory systems.
The primary care doctor should:
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investigate any stress, anxiety and/or depressive disorders, sleeping problems, etc, taking
account of the family, social and cultural context;
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check that the needs of both the family carer and the patient are met and the necessary
resources made available (medical, social and financial support).
For young carers, specific aspects such as employment or family related problems and their impact on the
health of the family carer should be taken into account.
Types of support that may be offered to family carers
Various types of support may be offered, the objectives of which are to relieve the family carer out of his/her
isolation and protect his social life and provide a suitable lifestyle:
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individual or group counselling;
support group with other carers, suited to his/her needs, dependent amongst other things on the
severity of the Alzheimer’s disease or related condition;
telephone or internet support;
training courses on Alzheimer’s disease or related conditions, services, communications and
problem solving;
individual or family psychotherapy.
In the absence of national data, those from international studies on the efficacy of these interventions
suggest that diversified and sustained management is to be preferred.
This document presents the key points of the clinical practice guideline:
“Alzheimer’s disease and related conditions. Health monitoring for family carers" – February 2010
For full guideline and evidence report (both in French) consult:
www.has-sante.fr
© Haute Autorité de Santé – 2010
In the event of a physical or mental illness being detected during this consultation, it should be managed in
the context of routine health care.