A GUIDE TO QUALITY CARE FROM THE PERSPECTIVES OF PEOPLE LIVING WITH DEMENTIA A special thanks to the Alzheimer’s Association® National Early-Stage Advisory Group, whose members continue to help us understand the lived experience of Alzheimer’s and other dementias, and teach us how to better meet their needs throughout the disease course. For more information on the content in this guide, please contact: Alzheimer’s Association 225 N. Michigan Ave. Chicago, IL 60601 800.272.3900 | alz.org® 2 Summary With more than 5 million Americans living with Alzheimer’s disease, direct care workers — such as nurse’s aides, home health aides, personal and home care aides — provide most of the paid long-term care to older adults living at home or in residential settings. From the perspective of individuals living with dementia, quality care includes person-centered care techniques that address their unique experiences and needs, which is contrary to a “one- size-fits-all” approach. In this guide, survey data and interviews from individuals living in the early stage of Alzheimer’s or with other dementias are used to describe quality dementia care, explore topic areas relative to the dementia experience and share approaches for care providers. As Alzheimer’s progresses, individuals living in the early stage will depend on care providers to help preserve their sense of identity, autonomy and quality of life with dementia. The information on the following pages provides valuable guidance for people living with the disease, their caregivers, other family members and anyone concerned about providing high quality dementia care. 3 Background For more than a decade, the Alzheimer’s Association® has committed itself to addressing the needs of individuals living in the early stage of Alzheimer’s or with other dementias. In January 2006, the Association launched its Early-Stage Initiative and formed the National Early-Stage Advisory Group (ESAG). The group is comprised of individuals from across the United States living with early-stage Alzheimer’s, other dementias or mild cognitive impairment (MCI) and includes individuals with younger-onset Alzheimer’s, meaning they developed symptoms before age 65. “Early-Stage” refers to people, irrespective of age, who are diagnosed with Alzheimer’s disease or related disorders and are in the beginning stage of their disease. Advisors are an invaluable resource to the Alzheimer’s Association as they represent people living with the disease and bring a unique perspective to key efforts of the Association. Through their work as national spokespersons for the Association, advisors raise awareness of Alzheimer’s disease and early-stage issues, reduce stigma, advocate to increase funding for Alzheimer’s research, and provide input about programs and support services for people in the early stage of Alzheimer’s or with other dementias. Since the launch of the National Early-Stage Advisory Group, 132 individuals have participated in the program, fulfilling an average of 50 national engagements each year, including presentations to the Social Security Administration (SSA), Food and Drug Administration (FDA), Office of Minority Health and the Special Committee on Aging. As advocates and advisors, the group also provided input on the development of The American Psychiatric Association Practice Guideline on the Use of Antipsychotics to Treat Agitation or Psychosis in Patients with Dementia, and the American Academy of Neurology Patient and Provider Shared Decision-Making Tool. In addition, advisors have ensured that the perspective of those living with the disease was included in the Food and Drug Administration (FDA) Patient Representative Program and the National Alzheimer’s Project Act (NAPA) Advisory Council on Alzheimer’s Research, Care and Services. In preparing this guide, the Early-Stage Initiative department of the Alzheimer’s Association solicited questions from researchers assigned to conduct literature reviews and draft recommendations for each of the eight topic areas of the Alzheimer’s Association 2018 Dementia Care Practice Recommendations. Questions were reviewed and modified as needed to ensure they would solicit responses that would help inform the authors. The survey consisted of 30 (mostly open-ended) questions shared through SurveyMonkey®, the online survey software. A group of 43 current and former National Early-Stage Advisors received an email describing the Dementia Care Practice Recommendations Project. The email contained a link to the survey questionnaire and provided advisors the opportunity to revisit the survey over a period of seven days. A total of 22 surveys were completed for a response rate of 51 percent. A team from the Alzheimer’s Association (Sam Fazio, Ph.D., director, Quality Care and Psychosocial Research; Monica Moreno, senior director, Care and Support; Emily Shubeck, associate director, Care and Support) summarized the survey data and recommendations. 4 Themes in Quality Care This guide synthesizes the feedback received from survey respondents, as well as additional information obtained from individuals living with dementia throughout the 10 years of the Alzheimer’s Association Early-Stage Initiative. From this feedback, the following themes emerged as ways to provide quality care to people living with Alzheimer’s or other dementias: » Encourage early detection and diagnosis. » Share appropriate information and education. » Get to know the person. » Maximize independence. » Practice patience and compassion. » Personalize care to meet individual needs and preferences. » Adjust care approaches to reflect day-to-day needs and abilities. » Provide ongoing opportunities for engagement that have meaning and purpose. » Ensure coordination among those who provide care. » Train staff on the most current disease information and practice strategies. » Inform and include the individual in new interventions as appropriate. » Create a safe and supportive environment that reflects the person’s characteristics, personality and preferences. These themes are consistent with the preferences for individualization and autonomy expressed by individuals living with early-stage Alzheimer’s or other dementias through survey responses and the Association’s ongoing dialogue with this group. 5 Encourage Early Detection and Diagnosis Quality person-centered care for individuals living with Alzheimer’s and other dementias begins with early detection and diagnosis. Care providers can often be the first to observe changes in memory and thinking, sometimes even before family members. The nature of a care provider’s role offers the unique opportunity to observe changes in their own environment. These observations can become even more vital when an individual lives alone. In the early stage of Alzheimer’s many people continue to live successfully on their own, however, as Alzheimer’s progresses, the individual may lack insight into the changes occurring or may not be available to observe the day-to-day challenges and safety issues. PERSPECTIVES OF PEOPLE LIVING WITH DEMENTIA The decision to see a doctor regarding memory and thinking problems was made primarily by the individual living in the early stage of Alzheimer’s after experiencing disruptive changes in memory and thinking that were affecting daily life. As one person reported, “I went to see the doctor after witnessing terrible Alzheimer’s symptoms in my family, and after serious short term memory loss myself [including] inability to multi-task, which earlier I exceeded at.” While many individuals recognized their symptoms before anyone else, having others share their observations and concerns was extremely important as it validated their suspicions and experiences. For some individuals, concern voiced by others is what encouraged them to visit their doctor. Individuals living alone also stated the importance of hearing the concerns of others regarding their memory and thinking problems as validation for their own concerns. As described, “It was confirming. Helpful in that way as I wrestled with what the hell was going on.” The absence of a care partner to recognize these changes early on could have resulted in a delay in diagnosis which may have placed them at greater risk for safety issues such as wandering and self-neglect. For many individuals who received a diagnosis of Alzheimer’s or another dementia, early detection and diagnosis validated their concerns and provided a sense of relief in knowing the cause of their symptoms. As one person stated, “It validated there was something wrong, and I wasn’t going crazy.” For others, an early diagnosis allowed them the opportunity to benefit from early intervention, which included education about dementia, support services, local resources and care planning. Another benefit was the ability to make decisions about issues that would affect their life including legal, financial and end-of-life planning. As one individual described, “You are able to help plan your future and make the tough decisions so your family does not have to later.” An early diagnosis also provided opportunities to develop strategies for living with dementia. These included adopting a healthy lifestyle such as following a Mediterranean diet; staying socially, mentally and physically active; keeping a positive attitude in order to live a quality life with the disease; and, as one person stated, “a purposeful though changed life!” 6 Share Appropriate Information and Education Receiving a diagnosis of Alzheimer’s disease or another dementia is life-changing. It is not uncommon for people living in the early stage of Alzheimer’s and their care partners to feel responsible for finding answers to the many questions a diagnosis creates. If diagnosed later in the progression, the individual with dementia is often unable to be an active participant in planning for the future and making decisions that will impact his/her life. Often, caregivers are left to assume the responsibility of finding information and resources, including what to expect and how to plan for the future, while at the same time trying to manage the demands of caregiving. Market research conducted by the Alzheimer’s Association found that most individuals in the early stage of Alzheimer’s and their caregivers locate information about dementia through internet searches (BCG, 2015). For individuals with a diagnosis, as well as care partners/caregivers, the market research indicated that this process was overwhelming, confusing and the large number of available resources — combined with the lack of direction on the most trustworthy source — was frustrating (BCG, 2015). PERSPECTIVES OF PEOPLE LIVING WITH DEMENTIA Individuals living in the early stage of Alzheimer’s or with another dementia confirmed that there continues to be a lack of appropriate information and resources shared immediately following a diagnosis. Several individuals reported, “I read all that I could through online sources and other periodicals.” They overwhelmingly agreed that access to appropriate information and education soon after diagnosis is an important component of person-centered care and learning to accept the diagnosis. This information was perceived as “very helpful in understanding the prognosis and what to expect as the disease progresses.” Basic information about Alzheimer’s and how to live a healthy life with dementia were identified as topics that would be most helpful post-diagnosis, and as explained by one individual, “There is life after diagnosis and I have learned to live life to the fullest.” People living with dementia frequently used education programs to obtain information about their diagnosis including prognosis, treatment and the impact on day-to-day life. The most common platform for receiving information was online. One individual stated, “The education program I attended provided me with a blueprint of things that I would need to take care of, from appointing a proxy to meeting with an elder-care attorney to formulate a plan.” For many, support groups connected them with others living with dementia and provided a sense of comfort in knowing they were not alone. Many respondents benefited from ongoing counseling from care providers and physicians who helped manage the challenges and emotions that come with living with dementia. There is life after diagnosis and I have learned to live life to the fullest. 7 Get to Know the Person One of the core components of person-centered care is getting to know the individual living with dementia. No two people living with Alzheimer’s or other dementias experience the disease in the same way, so taking the time to learn about a person’s life history and the qualities that make them unique can foster a more supportive relationship with care providers. As Alzheimer’s progresses and the individual loses the ability to communicate, care providers will need to rely on the input of others to develop strategies that best meet the care needs and preferences of the individual living with dementia. PERSPECTIVES OF PEOPLE LIVING WITH DEMENTIA According to individuals living with dementia, care providers should engage them in direct communication in order to understand who they are as a person. The best way to learn about the person with dementia is to listen and ask questions about his/her needs and expectations. As one person shared, “Spend time with me and inquire and discuss my past experiences, activities, likes and dislikes, goals, feelings, and desires,” while another commented, “Listen and speak to ME, the person living with dementia.” Care providers should consider how individuals living with dementia perceive their new identity with the disease and as one person advised, “Find out all they can about me — my life previously, my family dynamics, who I am.” In the early stage, persons living with Alzheimer’s desire to share information that gives care providers a broader picture of their personhood. As one individual described, “I want the opportunity to tell them something about myself that they wouldn’t necessarily know … my life, my hopes, my dreams.” For those living in the early stage of Alzheimer’s, the increasing loss of independence threatens their overall quality of life. As a result, they want to give care providers input regarding their current needs and preferences as Alzheimer’s progresses. As one person commented, “The interventions that I now resist may be the ones that I need to try later.” They also want care providers to know that while some interventions may be successful for one individual, they may not be effective for another. As Alzheimer’s progresses, people in the early stage want care providers to seek input from family members and friends to gain a better understanding of their value system, history, preferences, personality traits and behaviors. As one person suggested, “Make contact with persons who know me from their direct experience with me, such as my adult children, siblings, friends and medical professionals who have worked with me.” An understanding, inclusive and respectful approach to diversity was also seen as an important component in providing person-centered care. As described by one individual in the early stage, “Accept me as a person from the LGBT community.” One of the most compelling requests voiced by people with dementia was the hope that care providers would employ patience, especially as Alzheimer’s progresses and the triggers that can cause behavioral and psychological symptoms of dementia (BPSD) maybe hard to identify. They want to be treated as care providers themselves would like to be treated. As one person stressed, “We are people with feelings.” 8 Maximize Independence Alzheimer’s and other dementias are associated with the gradual loss of cognition and ability to perform the functions of everyday life. As a result, many individuals feel overwhelmed by the sense of loss surrounding their autonomy. One of the greatest challenges care partners face in the early stage of Alzheimer’s is not knowing when and how much assistance to provide. For individuals who live alone, changes in the ability to independently perform activities of daily living will require the support of others to ensure their safety. PERSPECTIVES OF PEOPLE LIVING WITH DEMENTIA People living in the early stage of Alzheimer’s felt strongly about remaining independent for as long as possible. They see care providers as playing an important role in helping to maximize their independence, but want them to provide assistance “in the right ways.” As one person stated, “Let me do as much as I can [by myself] and help when I need it or get confused.” Determining how care providers provide help was identified as critically important in helping those living with the disease maintain a sense of autonomy and control over their life. Individuals in the early stage reported that they need ongoing communication with care providers as Alzheimer’s progresses to identify coping strategies that foster their independence. As reported by one individual, “Try different things to help me navigate the uncertainties that lie ahead.” Knowing what type of assistance is needed and how the individual wants to be helped are considered important factors in providing person-centered care. For example, one individual commented, “Ask me HOW I want you to help me,” while another stated, “Ask me what I am comfortable doing on my own and what activities I think I need help with.” Let me do as much as I can [by myself] and help when I need it or get confused. Ask me what I am comfortable doing on my own and what activities I think I need help with. 9 Practice Patience and Compassion Part of person-centered care includes engaging the person in dialogue about their experience living with dementia. This information can provide valuable insights on how dementia impacts emotions, thoughts, behavior and day-to-day functioning. Understanding the personal impact of Alzheimer’s or another dementia on the individual receiving care may inspire care providers to practice patience and compassion. As Alzheimer’s progresses and the ability to communicate is affected, care providers will need to rely on patience and compassion to interpret the needs of the person and provide appropriate care. PERSPECTIVES OF PEOPLE LIVING WITH DEMENTIA To gain a better understanding of the experience of living with Alzheimer’s or another dementia, individuals living with dementia expect care providers to “talk with me as well as to me.” Finding creative ways to preserve the dignity of the person with dementia and make them feel valued were also identified as essential to providing person-centered care. Individuals felt strongly that care providers must be patient, caring, concerned and maintain a sense of humor. One person suggested, “Know that my heart is the same as long as I am surrounded by LOVING attention.” When looking toward the future, individuals expressed deep appreciation for care providers and the role they will play as Alzheimer’s disease progresses. Recognizing that the progression of Alzheimer’s may make providing care challenging, one person wanted care providers to know, “I will most likely be resistant to help. I ask for patience, understanding and forgiveness for those with whom I will battle. I would like them to know that I do appreciate their help and support.” Know that my heart is the same as long as I am surrounded by LOVING attention. I will most likely be resistant to help. I ask for patience, understanding and forgiveness for those with whom I will battle. I would like them to know that I do appreciate their help and support. 10