Living Well With Alzheimer’s
If you’re caring for someone with Alzheimer’s disease, you’ve probably wondered if you’re providing everything it takes for someone with Alzheimer’s disease to live their life to its fullest.
Now, new research has identified the most important factors contributing to Alzheimer’s patients’ (and their caregivers’) quality of life.
Led by the University of Exeter, the research seeks to inform support services and guide policy on where resources should be spent to support the 50 million people worldwide that have been diagnosed with a dementia to optimize their ability to “live well.”
Now, a large-scale study has produced two new papers published in Alzheimer Disease & Associated Disorders, which have established that a wide range of factors were found to play a role in living well with Alzheimer’s disease.
Psychological and Physical Contributors
The team found that psychological aspects, such as optimism, self-esteem and whether they encountered loneliness and depression were closely linked to the ability to optimize quality of life and well-being in both people with dementia and their caregivers.
Experience in other areas of life also influences psychological well-being and perceptions of living well.
Physical health and fitness was important for both groups. For both caregivers and people with dementia, social activity and interaction also ranked highly.
For people with dementia, their social situation and their ability to manage everyday life were important factors.
Caregivers rated their caregiving experience, and whether they felt trapped or isolated, as a key indicator in whether they could live well.
The research was conducted in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort. Funded by the National Institute for Health Research and the Economic and Social Research Council.
The study comprised 1,547 people diagnosed with mild to moderate dementia and 1283 caregivers. Both groups of participants provided ratings of their quality of life, satisfaction with life and well-being, in relation to dementia and to overall health.
The research team combined the findings into one overall “living well” score for people with dementia, and one for caregivers.
Lead author Professor Linda Clare, of the University of Exeter, who also leads the IDEAL study, said: “It’s so important to find ways for the 50 million people worldwide who have dementia to live as well as possible. Our research sheds new light on what factors play a key role in maximizing factors such as well-being and quality of life. This must now translate into better ways to support people with dementia.”
Co author Dr Anthony Martyr, of the University of Exeter, said: “Our research gives more specific guidance on where we should focus efforts to help people live as well as possible with dementia.
For example, looking at how we can help people with dementia to avoid depression or stay physically and socially active. For carers it could involve strengthening community ties and building strong networks. We now need to develop and research programs to establish what really works in these areas.”
Dr James Pickett, Head of Research at Alzheimer’s Society, said: “People with dementia have the right to live well — however without clear definition it can be hard to determine what ‘living well’ really means.
After looking at several factors, the IDEAL program has found that psychological health has the biggest impact on people affected by dementia living well.
Too many people face dementia alone without adequate support, and interventions that improve self-esteem, challenge negative perceptions towards ageing and reduce depression or loneliness could all help improve the psychological health of people affected.
Creating Quality of Life With Alzheimer’s
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; worshiping at a church or synagogue; 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.
Focus on Meaningful Activities
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.
How Caregivers Can Help
Defining 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.
Your Own Quality of Life
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 caregivers’ 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.
The Role of Healthcare 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 can try to devise care strategies that enhance the quality of life for both the patient and the caregiver, but ultimately, quality of life will be determined by the caregiver.
The Caregiver’s Checklist
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 behaviors 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.
Self-Care For the Caregiver
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 resources in your community by contacting the Alzheimer Association.
Creating Moments of Joy (5th Edition)
Jolene Brackey has a vision: that we will soon look beyond the challenges of Alzheimer’s disease to focus more of our energies on creating moments of joy.
When people have short-term memory loss, their lives are made up of moments.
We are not able to create perfectly wonderful days for people with dementia or Alzheimer’s, but we can create perfectly wonderful moments, moments that put a smile on their faces and a twinkle in their eyes.
Five minutes later, they will not remember what we did or said, but the feeling that we left them with will linger.
The new edition of Creating Moments of Joy is filled with more practical advice sprinkled with hope, encouragement, new stories, and generous helpings of humor.
In Creating Moments of Joy, Brackey reveals that our greatest teacher is having cared for and loved someone with Alzheimer’s and that often what we have most to learn about is ourselves.
Connecting in the Land of Dementia
On the dementia journey, each quality moment of connection is priceless. In Connecting in the Land of Dementia, Deborah Shouse and dozens of experts in the field of dementia share ideas that engage the creative spirit so you can continue to experience those meaningful moments of connecting.
These easy and adaptable projects–music, art, movies, cooking, storytelling, gardening, movement, and many more–can foster stronger relationships, renew hope, and ignite a sense of purpose for people who are living with dementia and their care partners.
You don’t need special skills to enjoy these expressive activities. Simply incorporate them into your daily routine and you’ll enrich your time together.
When Reasoning No Longer Works
Nearly five million families deal with Alzheimer’s Disease and other forms of dementia on a daily basis. They do this with little training, and often only their good intentions guide them.
When Reasoning No Longer Works is the training manual these family caregivers have been searching for.
Written by a Gerontologist with more than twenty years of experience, this reference gives the reader an easy to understand view of what dementia does to the brain, how it is diagnosed, and most importantly, how to deal with its effects.
Bulleted lists clearly explain:
- How to avoid a catastrophic reaction
- Specific approaches for aggressive behavior
- How to deal with disruptive behaviors
- Ways to diminish wandering
- What to do when a wanderer is missing
- When to look for outside help
You’ll also follow the story of Lou and Rose, a couple who share their lives with Alzheimer’s disease. Together, they find the answers to questions caregivers and victims are sometimes afraid to ask.
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.