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Note: The Alzheimer Society is currently in the process of reviewing our Guidelines for Care for people living with dementia in long term care facilities. This is an ambitious project involving health care professionals from across Canada as well as people with the disease and their family members. Our aim in developing these new guidelines is to improve the quality of care of people with dementia living in care facilities using a person-centred approach. We anticipate that the document will be available in 2010.
Highlights
[Note:
You can get related information from our Ethical
Guidelines pages on Quality of Life, Decision
Making and Restraints.]
A
good understanding of Alzheimer's disease and of appropriate
methods of care will help prevent difficulties and enable
caregivers to respond if difficulties do occur. Specialized
training and education should be available for unpaid
caregivers such as family members and significant others,
friends and neighbours, volunteers and other members
of the community as well as for staff of agencies, programs
and long-term care settings.
- All
caregivers should have access to training and education
which will help them understand the disease process
and assist them in their role as caregiver.
- Staff
of facilities and agencies should be required to participate
in a training and education program on meeting the
needs of the people with Alzheimer's disease and their
caregivers.
- An
orientation program should be provided for all caregivers
involved in services for people with Alzheimer's disease.
2.
Support for Caregivers
Providing
care for people with Alzheimer's disease can be very demanding,
and all caregivers may need support to deal with the
psychosocial as well as the practical aspects of caregiving.
The need for support is as relevant to paid caregivers
as it is for family members and other unpaid caregivers.
Unpaid caregivers often continue to need support after
the person with Alzheimer's disease has moved from the
home to a long-term care setting. Some family members
find support in others acknowledging that they have a
right to live their own life.
- All
services should meet the needs of family caregivers
as well as the needs of the person with Alzheimer's disease.
- All
caregivers should have access to supports and resources
to relieve the work and stress which may result from
caring for people with Alzheimer's disease.
3.
Individualized Assessment
A
functional assessment is needed to serve as the basis
for care planning. The assessment should provide a comprehensive
picture of the strengths and needs of the individual
and his or her family. Although an assessment differs
from a diagnosis (in which the purpose is to name or
label the condition which is causing the individual's
problems) results of some of the diagnostic tests may
be incorporated into the functional assessment.
- Each
individual should receive a comprehensive assessment
which will identify his or her needs, strengths and
abilities and personal characteristics.
- Where
possible, the assessment should be carried out by a
multi-disciplinary team in which each component is
carried out by the team member most qualified to administer
that particular portion.
- The
assessment should address the social circumstances
of the person with Alzheimer's disease and of their caregivers.
- The
assessment process should address the safety and security
of the person with Alzheimer's disease.
- On-going
assessments should monitor changes in the individual
and his or her circumstances.
4.
Individualized Care Planning
A
comprehensive care plan should be developed for all individuals
with Alzheimer's disease, whether they are living in the
community or in a long-term care setting. The plan should
be based on the results of the assessment, and should
reflect the needs and strengths of the individual with
Alzheimer's disease and their caregivers.
- Care
planning for the individual with Alzheimer's disease
should be carried out by a multi-disciplinary team.
- An
individualized and comprehensive care plan should be
prepared for each individual.
5.
Meaningful Programs and Activities
Programs
and activities should be provided by staff and volunteers
in community agencies, in long-term care settings and
when they are giving care in the home of a person with
Alzheimer's disease. Family caregivers are not likely to
think in terms of programs when they are caring for a
person with Alzheimer's disease at home, but they should
expect staff and volunteers to do so.
- Programs
for persons with Alzheimer's disease should include the
routines of daily living as well as special activities.
- Programs
serving people with Alzheimer's disease should promote
well-being and enjoyment.
- Programs
and activities should be flexible and change in response
to the changing needs of the person with Alzheimer's disease.
6.
Specialized Human Resources
Some
requirements of staff and volunteers caring for people
with Alzheimer's disease exceed those expected of staff
and volunteers providing care to older adults who are
not cognitively impaired. The guidelines on Specialized
Training and Education for Caregivers also describe
some additional expectations for these caregivers.
- Procedures
relating to the use of staff and volunteers in facilities
and agencies should reflect the special requirements
of people with Alzheimer's disease.
- Performance
appraisals should address the special issues facing
staff and volunteers who provide care for people with
Alzheimer's disease.
7.
Supportive Physical Design
As
the disease progresses, the individual becomes unable
to rely upon his or her own interpretations of the environment
to function effectively. The role of the environment
includes not only the physical design, but also the social
and organizational setting. The environment takes on
a therapeutic role in helping the person function according
to his or her abilities and maintaining a quality of
life.
- The
environment should meet the safety and security needs
of the individual with Alzheimer's disease.
- The
environment should reduce the confusion of the person
with Alzheimer's disease.
- The
environment should contribute to the effective functioning
of the individual with Alzheimer's disease and their
caregivers.
8.
Transportation
Transportation
of people with Alzheimer's disease requires special procedures
to ensure their safety and the safety of others. These
guidelines should be respected whenever a person with
Alzheimer's disease is a passenger, even if the driver
is a family member and the person with Alzheimer's disease
is the only passenger.
- Vehicular
transportation should be provided in a manner which
ensures the safety and emotional comfort of the person
with Alzheimer's disease.
9.
Decision-making: Respecting Individual Choice
A
diagnosis of Alzheimer's disease does not necessarily mean
that an individual is immediately unable to make decisions.
Decisions can vary on a continuum from simple expressions
of immediate desire to complex issues requiring information,
specific experience and/or personal judgment. The extent
to which an individual can make decisions on this continuum
varies greatly. While competent, the individual should
be given the opportunity to make decisions regarding
future care.
Throughout
most of the course of the disease, some abilities of
the individual will remain and these abilities should
be respected. However, time invariably will come when
decisions must be made without the direct input from
the individual. Knowing the individual's specific wishes,
values and preferences will greatly assist in making
decisions on the individual's behalf.
- The
individual with Alzheimer's disease and/or a designated
decision-maker should have maximum involvement when
decisions about the person with Alzheimer's disease are
taking place.
- If
an assessment of competency is required, the assessment
should be undertaken by an individual or team which
has special skill in making competency assessments.
10.
Prevention of and Response to Abuse
Abuse
may consist of physical, psychosocial or financial abuse,
as well as neglect. In responding to the potential for
abuse, the emphasis must be on preventing the circumstances
which may lead to its occurrence. Although the greatest
concern is the possibility of abuse by the caregiver,
on rare occasions the individual with Alzheimer's disease
may engage in behaviour which is abusive to the caregiver.
- The
emphasis should be on preventing abuse by identifying
and alleviating circumstances which are likely to lead
to physical, psychosocial or financial abuse or neglect.
- Facilities
and agencies should have a protocol to deal with abuse.
- Caregivers
should take action when they suspect abuse has occurred.
11.
Use of Restraints
A
restraint is anything that restricts or controls an individual's
movement or behaviour. Restraints can include physical
restraints (items that restrict an individual's movement),
chemical restraints (medications that restrict an individual's
behaviour), and environmental restraints (modifications
to a person's surroundings that restrict movement).
Restraints,
when used in an appropriate manner, can have therapeutic
effects. For example, the temporary use of a lap belt
can support a person to sit up and participate in a group
activity; the short-term use of a medication can decrease
disturbing hallucinations; a protected garden can allow
for safe wandering.
Often,
however, restraints are inappropriately used to manage
behaviour in the belief that less harm will be done if
the person is restrained. Research has demonstrated that
inappropriate use of restraints has debilitating effects
on the person with Alzheimer's disease. They can result
in the person losing skills and abilities which are unlikely
to return. The emotional effects include loss of independence
and low self-esteem. The reliance on restraints discourages
caregivers from investigating the underlying cause of
the person's distress.
While
the preferred choice is no restraint use, the guidelines
support the therapeutic use of a restraint for a limited
time period while the person is being closely monitored.
Further guidance is found in the following recommendations:
- The
emphasis should be on eliminating the need to contemplate
restraint use by preventing or managing the behaviour
which leads to the desire to use restraints.
- Every
facility or agency should have a clearly stated protocol
on the use of physical, chemical and environmental
restraints.
- Every
effort should be made to reduce the negative impact
of the experience and preserve the person's dignity.
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