Quality of life

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.

Each person’s definition of quality of life may include different factors 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.
All those who participate in the lives of people with Alzheimer's disease or other dementias should understand that, despite changes and loss of abilities, people with the disease can still find pleasure and experience satisfaction.

For people with dementia

Influencing your own quality of life:

As your disease progresses, you will lose abilities that you may consider important to quality of life. Some people think that quality of life is lost once a person is diagnosed with dementia. Others feel that quality of life can be maintained well into the disease process. The disease, however, does not remove your ability to appreciate, respond to and experience feelings such as anger, fear, joy, love or sadness.

While your symptoms are mild to moderate, you will likely know what gives you pleasure and contributes to your sense of well-being. You might like to seek help to adapt to changing abilities and participate in meaningful activities. Remember that once you can no longer make choices or decisions, caregivers, family members or health-care providers will need to make decisions for your, so it is important to talk to them and let them know your wishes.

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. Avoid imposing your own personal values and interpretation of quality of life on someone else. The abilities and interests of someone with dementia 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. Recognizing her abilities, interests and life-long skills helps to maintain and enhance her quality of life.

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 dementia 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.

As family members and caregivers, you need to find the balance between your own quality of life and the quality of life of the person you are caring for. If you can’t, those close to you should help you recognize this need for balance. If you don’t find the balance, the quality of life of both you and the person with the disease might suffer.

For health-care professionals

Lack of understanding, training and human resources: Some health-care professionals who provide care for people with Alzheimer's disease do not understand issues relating to quality of life. 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.

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 dementia and the caregiver. Professionals should try to devise care strategies that enhance the quality of life for both.

How to maintain quality of life for the person with dementia

 People with Alzheimer's disease and other dementias are individuals and need to be treated with respect, integrity, compassion, dignity, and 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 appropriate social and physical environments.

Consider the following suggestions:

  • Learn about Alzheimer's disease and other dementias; understand how the disease progresses; learn how to communicate with the person with the disease, e.g. learn how her face conveys emotions such as joy and fear.
  • Ask her about her particular likes, dislikes and opinions; if she can’t tell you, talk to someone close to her who can.
  • Become aware of people, activities and things that are known to give her pleasure.
  • Support her to be as independent as possible.
  • Build on her strengths and abilities; encourage a sense of feeling useful and valued.
  • Give her opportunities to make choices.
  • Ensure that her 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.
  • Provide living space that is safe, familiar and provides a sense of security, while allowing her to maintain remaining abilities.
  • Respect the need for companionship, including physical intimacy. Relationships with family and friends should be fostered as much as possible.
  • Provide care that responds to her needs and focuses on abilities rather than losses.
  • Acknowledge and recognize that her interests may change over time; avoid imposing former values and expectations.
  • Ensure that everyone who provides care for her recognizes that people with the disease are to be valued and should be treated as individuals.
  • Recognize that all her actions and behaviours are meaningful and reflect a desire to communicate something.
  • Recognize that her quality of life is closely linked to the quality of life of the caregiver. As the disease progresses, the connection between the two becomes stronger.

How to maintain quality of life for caregivers

Consider the following suggestions to help maintain your own quality of life:

  • Learn about Alzheimer's disease and dementias; understand how the disease progresses; learn how to communicate with people with the disease.
  • Talk to close friends about your own needs, the needs of the person being cared for and where the two sets of needs conflict.
  • Find support from groups or from one-on-one relationships.
  • Take regular breaks from caregiving for a few hours, days or weeks; find activities that help you get away from caregiving responsibilities and tasks.
  • Recognize the signs of stress and develop ways to deal with them.
  • Take satisfaction in the work you are doing to provide quality care.
  • Learn to ask for and accept help.
  • Tell your doctor that you are caring for someone with dementia to ensure your own health is monitored and treated if necessary.
  • Become aware of your own feelings and reaction to stress. Take care of your own needs throughout the course of the disease.
  • Plan for changes, recognizing that you may need to make difficult decisions.
  • Acknowledge the need for companionship and physical intimacy. Foster relationships with family and friends as much as possible.
  • List the negative and positive aspects of caregiving, and seek help from others to increase the positives and decrease the negatives.
  • Learn 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:
  1. Are You Caring for Someone with Alzheimer Disease? Remember to Take Care of Yourself Too!
  2. Guidelines for Care
  3. Ethical Guidelines
Other:
  1. The Best Friends Approach to Alzheimer's Care. Virginia Bell and David Troxel, Health Professions Press, Baltimore, MD, 1997.
  2. Dementia Reconsidered: The Person Comes First (Rethinking Ageing). Tom Kitwood, Open University Press, 1997.

Last Updated: 12/16/11