Dementia is a chronic degenerative neurologic syndrome characterized by gradually worsening cognitive impairment, loss of ability to perform independent activities of daily living, eventual total dependence and, ultimately, death. Sixty to eighty percent of dementia cases involve Alzheimer’s disease, but numerous other pathologies can cause dementia. Although rates of dementia have decreased because of improved public health messaging on health promoting behaviors (e.g., tobacco cessation, control of hypertension and hyperlipidemia, reduced consumption of red meat and other foods that promote arteriosclerosis, increased physical activity), the overall number of dementia cases continues to rise at an alarming rate as Americans live longer. It is estimated that there are currently 7 million cases in the U.S. alone that are caused by Alzheimer’s disease, and cases are expected to double by 2060. Further, with advances in biomarker detection (e.g., through the development of reliable and sensitive blood indicators to identify dementia-causing diseases), more people will be diagnosed before dementia symptoms even develop. With earlier pre-symptom diagnoses of dementia-causing diseases, people will be grappling with the probability of dementia and its potential ramifications much earlier and for a far longer period.
As a chronic illness, dementia is a health psychology-relevant matter and practicing psychologists will be called upon with more frequency to help patients and families come to terms with this life-limiting diagnosis. In other words, dementia is not simply a matter of referring a patient with memory concerns to a neuropsychologist and neurologist (Paladino et al., 2025).
Caregivers are a crucial piece of the treatment puzzle for patients facing dementia and much can be done at diagnosis to help the caregiver (and the patient) prepare for a likely dementia trajectory. This includes helping patients and potential caregivers understand the disease and its potential trajectory, assisting them in making critical planning decisions early in the disease process (e.g., wills, living wills, identifying health care proxies, and considering healthcare preferences and other end-of-life decisions), and guiding patients and loved ones on how to communicate about their preferences and decisions. These discussions are not a one-and-done process. Helping families discuss end-of-life preferences before dementia robs the patient of decisional capacity can help the patient maintain autonomy in decision-making and help caregivers avoid the confusion and possible guilt surrounding making life and death decisions on their loved one’s behalf.
One excellent resource for patients, caregivers, and healthcare personnel is Hope for the Best, Prepare for the Rest: 7 Keys for Navigating a Life-Changing Diagnosis by Drs. Sammy Winemaker and Hsien Seow (2023). The authors also offer various practical resources on their website, The Waiting Room Revolution (www.waitingroomrevolution.com), including handouts such as the Alzheimer’s Planning Roadmap. Another useful resource, aimed more at the practitioner than the patient, is the Serious Illness Conversation Guide, created by Ariadne Labs found at https://www.ariadnelabs.org/wp-content/uploads/2023/05/Serious-Illness-Conversation-Guide.2023-05-18.pdf. This communication guide encourages a conversational and emotionally safe approach for practitioners when talking to patients and their families, including asking permission to talk about what is happening with the patient’s health, assessing their understanding, and asking the patient (and caregivers) what matters most to them and what their goals are as they manage the illness.
Caregivers themselves are at risk for health concerns as their loved ones’ cognitive and physical deterioration becomes more noticeable and requires increasing levels of care (Ham et al., 2025). Unpaid caregivers (usually family members but sometimes friends and neighbors) are drafted into a massive army that is 12+ million strong and rising. Care needs often extend for years, escalating in burden with patient deterioration. Caregivers are often unprepared for the emotional, physical, and financial burden they face. Although there is much written about caregiver skills for managing a loved one with dementia, there is less available to the caregiver for their own well-being and stress management. Caregivers are faced with frustration, anger, guilt, and a myriad of other “taboo” emotions (such as disgust toward their loved one’s physical deterioration, and ambivalence regarding their longevity), along with what may be confusing anticipatory grief of their loved one dying and sequential grief as they see monthly, weekly, and then daily loss of functioning on the part of the patient.
Educational or discussion groups on dementia are important and may include a mix of people currently caring for someone with dementia and those who have cared for loved ones with dementia in the past. Less frequently, someone with cognitive impairment (usually in earlier stages) will be a participant, or the occasional person with an intellectual interest in the topic may attend. One format for these groups is to begin with sharing the facts and dispelling myths surrounding dementia and dementia-causing diseases and thereafter move to the importance of planning and communication. Not surprisingly, current dementia caregivers may be exhausted and looking for some actionable steps to help them get through the years of increasingly demanding caregiving. Focusing on caregiver well-being is an inadequately addressed but much needed aspect of the dementia conundrum (Clemmensen et al., 2021). It is important to emphasize that understanding, planning, and communication are linchpins to long-term coping with this life-limiting illness and the demands of caregiving.
Developing stress management skills are another crucial aspect to dealing with a years-long escalating illness. Some of the topics reviewed in these types of classes/discussion groups are:
- Finding one’s circle of support. This includes family, friends, online and face-to-face support groups. Social isolation is a killer, physically and emotionally. Caregivers (and people with dementia) often feel ostracized and alone. Knowing that others are dealing with similar situations and hearing about their strategies, struggles and approaches to self-care can be empowering. Family and friends who are not directly involved with caregiving can – and should – be enlisted to be on the support team.
- Accepting offers of help. In the U.S. in particular, independence and autonomy are highly prized values, and there is a reluctance to being seen as needing help. Caregivers (and patients if possible) should be encouraged to keep a list of small tasks nearby, and each time they are asked by someone if they can “do anything to help,” to give them a small, doable task. This is a way to build a care team, which will be needed for the long-term.
- Ask for help. Unfortunately, there is also a social stigma regarding dementia. Jason Karlawish, author of The Problem of Alzheimer’s (2021), notes that when a person says they have dementia the world tends to leave them and their caregiver(s). Of course, this public stigma adds to feelings of isolation and hopelessness. Empowering caregivers to ask for help using standard assertiveness tools will boost a sense of self-efficacy and reduce hopelessness.
- Examine one’s coping strategies. Caregivers (and patients when possible) should be invited to consider the characteristic ways they cope with stress and to periodically make a list of what they are doing to cope, then sorting their strategies into positive and self-defeating columns. They can then pick an unhelpful coping strategy they would like to change and discuss how they plan to approach this with other supportive people in their life. Not surprisingly, small breaks, respites when possible, physical activity and regular relaxation/meditation should also be encouraged.
Health psychologists need not reinvent the wheel of stress management to help both patients and caregivers facing a life-limiting diagnosis like Alzheimer’s disease. Key strategies of therapeutic support involve early intervention to help them understand the nature of the disorder, plan, communicate, and build their stress management repertoire for this marathon.
Beverly E. Thorn, Ph.D., ABPP, is a licensed psychologist, board certified in health psychology by the American Board of Professional Psychology, and a fellow in the Societies of Behavioral Medicine, Clinical Psychology, and Health Psychology. She has authored hundreds of articles, two books, and four workbooks on coping with chronic illnesses such as chronic pain. More recently, she wrote a memoir/guidebook entitled Before I Lose My Own Mind: Navigating Life as a Dementia Caregiver, Girl Friday Productions, in press. See https://drbeverlythorn.com/ for more information and caregiver resources.
References
Clemmensen, T. H., Lauridsen, H. H., Andersen‐Ranberg, K., & Kristensen, H. K. (2021). ‘I know his needs better than my own’–carers’ support needs when caring for a person with dementia. Scandinavian Journal of Caring Sciences, 35(2), 586-599.
Ham, Y., Jin, Y., Hong, I., & Park, J. H. (2025). Association between chronic illnesses in older adults and caregiver burden: A cross sectional study in the United States. Aging & Mental Health, 1-7.
Karlawish, J. (2021). The problem of Alzheimer’s: How science, culture, and politics turned a rare disease into a crisis and what we can do about it. St. Martin’s Press.
Paladino, J., Chavez Granados, H., Bernstein Sideman, A., Davila, C., Ramirez Gomez, L., Lindenberger, E., … & Ritchie, C. (2025). Characterizing diagnostic disclosure communication strategies and challenges in dementia care: A qualitative study of interprofessional clinicians across three systems. Dementia, 14713012251321569.
Winemaker & Hsien Seow (2023). Hope for the best, prepare for the rest: 7 Keys for navigating a life-changing diagnosis. Page Two.