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Quality
of Life
Background
For
each person, the definition of quality of life is different
and deeply personal. One person may define quality of
life as enjoying the beauty of a sunset. Another person
may describe it as sharing a holiday celebration with
family; worshipping at a church, synagogue or mosque;
playing a game of bridge; washing a car; listening to
music or solving a crossword puzzle. Each person has
a unique standard of what has value and what gives quality
to life.
In
defining quality of life, many different factors may
be considered, such as:
- the
ability to think, make decisions and have control in
one's daily life;
- physical
and mental health;
- living
arrangements;
- social
relationships;
- religious
beliefs and spirituality;
- cultural
values;
- a
sense of community;
- financial
and economic circumstances.
The
issues
For
people with Alzheimer's disease:
Influencing
one's own quality of life: As Alzheimer's disease
or a related dementia progresses, a person will lose
many of the abilities considered important to quality
of life. Some people think that quality of life is
lost once a person is diagnosed with Alzheimer's disease.
Others feel that quality of life can be maintained
well into the disease process.
People
with mild to moderate symptoms of Alzheimer's disease usually
know what gives them pleasure and contributes to their
sense of well-being. They may seek help to adapt to changing
abilities and participate in meaningful activities. However,
if the person can no longer communicate or make choices
and decisions, then caregivers, family members or health-care
providers will need to make them.
For
family members and caregivers:
Determining
someone else's quality of life: Determining how
another person would define quality of life is not
easy, but it is extremely important. It is vital to
avoid imposing one's own personal values and interpretation
of quality of life on someone else. The abilities and
interests of someone with Alzheimer's disease will change
over time. However, every effort should be made, especially
as the disease progresses, to provide an optimum quality
of life for the person.
Effects
of caregiving: Many caregivers derive a sense of
satisfaction and growth from caregiving but may have
difficulty balancing their own needs and those of the
person with the disease. The tasks and responsibilities
of caring for someone with Alzheimer's disease can have
positive and negative effects on the quality of life
of family members and caregivers. The degree to which
their quality of life is affected may be influenced
by:
- the
nature (parent, spouse, friend, lover) and strength
of the relationship between the person with Alzheimer's disease and the caregiver;
- the
personalities of the person with Alzheimer's disease
and the caregiver, and the ability of each to adapt
to changes caused by the disease;
- the
psychological, physical, spiritual and financial resources
of the caregiver;
- other
day-to-day roles and expectations, such as being an
employee, parent, business person, volunteer;
- the
caregiver's location and place of residence, in relation
to that of the person with Alzheimer's disease;
- the
opinions, views and demands of people outside the caregiving
relationship;
- a
health-care system that seems to be placing more responsibilities
on caregivers while providing less and less support.
Young
children in a caregiver's family may find their own quality
of life affected, as they may need support and attention
that the caregiver is unable to give.
For
health-care professionals:
Lack
of understanding, training and human resources: Some
health-care professionals who provide care for people
with Alzheimer's disease lack an understanding of the
issues relating to quality of life in Alzheimer's disease.
Consequently, they fail to implement preferred care
strategies. Long-term care facilities may also lack
appropriate educational, human and financial resources
to provide quality care for people with Alzheimer's disease.
Preferred
choices
- Quality
of life for people with Alzheimer's disease
All
those who participate in the lives of people with
Alzheimer's disease should know or learn that, despite
changes and loss of abilities, people with Alzheimer's disease are able to find pleasure and experience
satisfaction. The disease does not remove a person's
ability to appreciate, respond to and experience
feelings such as anger, fear, joy, love or sadness.
Recognizing an individual's abilities, interests
and life-long skills helps to maintain and enhance
that person's quality of life.
- Quality
of life for family members and caregivers
Family
members and caregivers must strike a balance between
their own quality of life and the quality of life
of the person they are caring for. If they are unable
to do so, then those close to them should help them
recognize this need for balance. If a balance is
not struck, the quality of life of both the caregiver
and the person with the disease might suffer.
- Care
strategies for health-care professionals
Health-care
professionals who provide care to people with Alzheimer's disease must recognize that they play a role in influencing
the quality of life of both the person with Alzheimer's disease and the caregiver. Professionals should try
to devise care strategies that enhance the quality
of life for both.
What
can be done to enhance the quality of life of people
with Alzheimer's disease?
People
with Alzheimer's disease are individuals and need to be
treated with respect, integrity, compassion, dignity,
and with concern for their privacy and safety. People
with mild to moderate symptoms may need support in finding
opportunities to enhance their quality of life. As the
disease progresses, preserving the quality of life of
the person with the disease will require the provision
of appropriate social and physical environments.
Some
key elements to consider include:
- Learning
about Alzheimer's disease, understanding how it progresses,
and knowing how to communicate with the person with
the disease; for instance, learning how a particular
person's facial expressions convey emotions such as
joy and fear.
- Consulting
the person to learn more about particular likes, dislikes
and opinions; and, when the person is unable to communicate
this, talking to someone close to the person who can.
- Knowing
the person and being aware of people, activities and
things that are known to give pleasure to the person.
- Providing
the necessary support to preserve as much independence
as possible.
- Building
on the person's strengths and abilities, and encouraging
a sense of feeling useful and valued.
- Giving
the person opportunities to make choices.
- Ensuring
that the person's overall health is monitored and assessed,
and that appropriate treatments are given. A diagnosis
of Alzheimer's disease does not automatically prevent
the presence of other health concerns and diseases.
Failure to treat other illnesses can worsen the symptoms
of Alzheimer's disease.
- Providing
living space that is safe, familiar and provides a
sense of security, while allowing the person to maintain
remaining abilities.
- Respecting
the need for companionship, including physical intimacy.
Relationships with family and friends should be fostered
as much as possible.
- Providing
care that responds to each person's needs and focuses
on abilities rather than losses.
- Acknowledging
and recognizing that the person's interests may change
over time rather than trying to impose former values
and expectations.
- Ensuring
that all who provide care for people with Alzheimer's disease recognize that people with the disease are
to be valued and should be treated as individuals.
- Recognizing
that all actions and behaviours of people with the
disease are meaningful and reflect a desire to communicate
something.
- Recognizing
that the quality of life of the person with the disease
is closely linked to the quality of life of the caregiver.
As the disease progresses, the connection between the
two becomes stronger.
What
can be done to enhance the quality of life of people
who provide care?
Strategies
to enhance the caregiver's quality of life include:
- Learning
about Alzheimer's disease, understanding how it progresses
and learning how to communicate with people with the
disease.
- Talking
to close friends about one's needs, the needs of the
person being cared for and where the two sets of needs
conflict.
- Finding
ongoing support from groups or from one-on-one relationships.
- Taking
regular breaks from caregiving, for a few hours, days
or weeks, and finding activities that help one get
away from caregiving responsibilities and tasks.
- Recognizing
the signs of stress and developing ways to deal with
them.
- Taking
satisfaction in the work one is doing to provide quality
care.
- Learning
to ask for and accept help.
- Making
sure the doctor knows that one is caring for someone
with Alzheimer's disease, to ensure that one's health
is monitored and appropriate treatments obtained.
- Becoming
aware of one's own feelings and reaction to stress.
Taking care of one's needs throughout the course of
the disease.
- Planning
for changes, recognizing that there may be difficult
decisions ahead.
- Acknowledging
the need for companionship and physical intimacy. Relationships
with family and friends should be fostered as much
as possible.
- Listing
the negative and positive aspects of caregiving, and
seeking help from others to increase the positives
and decrease the negatives.
- Learning
about available community resources by contacting the local
Alzheimer Society.
In
closing...
The
quality of life of the person with Alzheimer's disease
must be a central focus of care. It is vital that those
providing care respond to that person's needs, wishes
and values. The ultimate goal of care must be to provide
a sense of well-being for that person.
At
the same time, it must be recognized that the quality
of life of the caregiver can be as important as that
of the person with Alzheimer's disease. When conflicts
arise, communication, information, self-awareness, support
and understanding can help caregivers find solutions
to ensure that their own quality of life does not become
a casualty of the disease.
Resources:
From
the Alzheimer Society of Canada:
- Are
You Caring for Someone with Alzheimer Disease? Remember
to Take Care of Yourself Too!
- Guidelines
for Care
Other:
- The
Best Friends Approach to Alzheimer's Care. Virginia
Bell and David Troxel, Health Professions Press,
Baltimore, MD, 1997.
- Dementia
Reconsidered: The Person Comes First (Rethinking
Ageing). Tom Kitwood, Open University Press,
1997.
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