Quality of life
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. 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 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
As your disease progresses, you will lose abilities that you may consider important to quality of life. You might also like to seek help to adapt to changing abilities and participate in meaningful activities. The disease does not remove your ability to appreciate, respond to and experience emotions.
While your symptoms are mild to moderate, you will likely know what gives you pleasure and contributes to your sense of well-being. Remember that it is important to make your wishes known, as once you can no longer make decisions, caregivers, family members or health-care providers will need to make choices for you.
For family members and caregivers
Avoid imposing your own personal values and interpretation of quality of life on someone else. It is important to determine how they would define quality of life. The abilities and interests of someone with dementia will change over time. As the disease progresses, every effort should be made to continue to provide an optimum quality of life for the person.
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 dementia and the caregiver. Professionals should try to devise care strategies that enhance the quality of life for both. Appropriate education, human, and financial resources are essential to increase understanding and provide quality care for people with Alzheimer’s disease and other dementias.
How to maintain quality of life for the person with dementia
People with Alzheimer's disease and other dementias need to be treated with respect, integrity, compassion, dignity, and concern for their privacy and safety. People with mild to moderate symptoms may need additional support to find 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
- Ask about particular likes, dislikes and opinions. If he or she can’t tell you, talk to someone close to them who can.
- Acknowledge and recognize that her interests may change over time. Avoid imposing former values and expectations.
- Build on his or her strengths and abilities. Encourage a sense of feeling useful and valued.
- Give him or her opportunities to make choices.
- Provide care that responds to her needs and focuses on abilities rather than losses.
- Ensure that overall health is monitored and assessed, and that appropriate treatments are given. 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.
- Recognize that all her actions and behaviours are meaningful and reflect a desire to communicate something.
- Respect the need for companionship, including physical intimacy. Relationships with family and friends should be fostered as much as possible.
How to maintain quality of life for caregivers
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 age of the caregiver (i.e. 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)
- 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.
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. When conflicts arise, communication, information, self-awareness, support and understanding can help you find solutions to ensure that your own quality of life does not become a casualty of the disease.
Consider the following suggestions:
- Learn about Alzheimer's disease and dementias; understand how the disease progresses; learn how to communicate with people with the disease.
- Become aware of your own feelings and reactions to stress. Recognize the signs of stress and develop ways to deal with them.
- Talk 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 with family and friends.
- Learn to ask for and accept help.
- Take regular breaks from caregiving for a few hours, days or weeks; find activities that help you get away from caregiving responsibilities and tasks.
- Take satisfaction in the work you are doing to provide quality care.
- Focus on the positives rather than the negatives.
- Tell your doctor that you are caring for someone with dementia to ensure your own health is monitored and treated if necessary.
- Plan for changes, recognizing that you may need to make difficult decisions.
- Learn about available community resources by contacting the local Alzheimer Society.