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55 Dementia Dissertation Topics

Published by Owen Ingram at January 2nd, 2023 , Revised On August 16, 2023

The term dementia refers to a collection of symptoms and disorders, rather than a single disease. As a result, dementia has a wide range of dissertation topics. Finding a dissertation subject related to dementia sufferers might be advantageous. You may be attempting to make a difference in the lives of dementia sufferers. You must investigate some previously unknown features to assist them! For those hoping to use their dissertation to help people with dementia, this is the right place. Our team has compiled a list of dissertation topics for your consideration. Picking dementia research subjects that haven’t received as much attention as others can add something new to the table.

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List Of Dementia Dissertation Topics For All Academic Levels

• An in-depth investigation of dementia in men and women – a case study
• An examination of the ways advocated by experts for dealing with dementia sufferers
• Highlighting the genetic and environmental risk factors for dementia development in the elderly in the United Kingdom
• The study of senior dementia patients and how they react to definite and uncertain conditions
• A comprehensive analysis of the connection between risks and smog and an increase in dementia in European industrial towns
• Experts studied a cognitive test for diagnosing mild dementia diseases in male patients.
• Use educational expert dementia strategies and how they might help treat and care for dementia sufferers.
• How much nursing assistance is required to care for dementia patients?
• Investigating the significance of the care policy for senior dementia patients in the United States of America
• The nursing qualification and certifications necessary for the care of senior dementia patients in the United Kingdom are highlighted.
• Recognizing the patient’s quality of life. A patient with dementia is the subject of this case study
• What are the most effective ways for early dementia identification in the United Kingdom? A thorough investigation
• A study of dementia patients receiving home care and how it has aided in reducing the symptoms
• Do dementia caregivers experience stress? – an examination of survey results.
• Non-pharmacological therapies for aggressiveness and stress in dementia patients
• What is the pain treatment procedure for dementia patients?
• The dementia nurses training program in the United Kingdom and how it has improved dementia patient care
• A comparison study evaluated the relationship between dementia patients’ longevity and the point at which their therapy began
• Investigating the link between memory loss and the early stages of dementia
• Investigating the cognitive tests nurses use to detect minor cognitive impairments that can progress to dementia in male patients
• Problem behaviour in dementia and the production of informal caregiving services
• Investigating the use of educational strategies by nursing staff in overcoming communication challenges in dementia patients
• Patient-centred pain control in elderly people with dementia equality, diversity, and inclusion in dementia care practice
• Can cognitive training slow the progression of dementia?
• What function does physical activity increase mobility and stamina in vascular dementia patients? An in-depth examination
• The importance of contemporary technology in the care of patients suffering from dementia. A thorough examination of dementia sufferers in the United Kingdom
• Examine the factors that increase the likelihood of developing dementia at a young age in the United Kingdom
• The ability of nursing staff to determine the requirements of dementia patients by interpreting behavioural displays and emotional responses of patients
• Making end-of-life decisions for nursing home residents with dementia
• Autism and dementia are both diagnosed and treated in the same way
• Identifying modifiable dementia risk factors pathways connecting late-life depression and dementia
• Is there communication between dementia doctors and patients?
• What are the global trends in dementia? – case studies from various nations
• Dementia research by UK ethnic minorities and how it has affected individuals
• Mild cognitive impairment and dementia in Parkinson’s disease imaging
• Improving cognitive function before clinical dementia symptoms
• Longitudinal relationships between serum cytokine levels and dementia
• Dementia and the affected parts of the brain
• Examine doll therapy treatment and how it has progressed and improved the medical sector
• Observational pain assessment scales for dementia patients
• The treatment of dementia patients and its beneficial impact on their lives.
• Deficits in exploration under ecological conditions as a marker of apathy in frontotemporal dementia
• What are the three behavioural issues related to dementia?
• What are some common behaviours observed in dementia patients?
• When do dementia patients forget about family members?
• What is the life expectancy of someone suffering from Parkinson’s disease and dementia?
• How can you tell if someone has dementia is near death?
• An overview of the literature on medical ideas and notions about dementia.
• A study on a cognitive test for diagnosing mild dementia diseases in male patients.
• What effect does dementia have on a person’s care needs?
• Why is early retirement associated with an increased risk of dementia?
• Do retirees with dementia require financial assistance?
• What are dementia pharmacological interventions?

If you have chosen one of the above dementia dissertation topics, you can start working on your dissertation . You might also want to review our list of nursing dissertation topics for extensive research because they are correlated with the field of medical science.

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Final Words

There is no doubt that your dissertation is the most important document of your academic career. A dissertation on dementia is another matter altogether. Your dissertation topic should entice your readers to read it by piquing their interest.

Above, we have provided the most comprehensive dementia research topics. The topic of your dissertation can be anything you wish. Ensure that your final dissertation topic meets the criteria for your dissertation. Dissertations that fail to meet the approval standards will almost certainly be rejected. We offer customised dementia dissertation topic s with research aims and objectives if you are still looking for suggestions.

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To find dementia dissertation topics:

• Study recent research in dementia.
• Identify specific aspects like care, treatment, ethics.
• Explore interdisciplinary angles.
• Consider cultural, societal implications.
• Consult experts or professors.
• Choose a meaningful and feasible topic for in-depth study.

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Dementia Prevention and Treatment : A Narrative Review

• 1 Multicampus Program in Geriatric Medicine and Gerontology, David Geffen School of Medicine, University of California, Los Angeles
• 2 Department of Neurology, Cedars-Sinai Medical Center, Los Angeles, California
• 3 Jona Goldrich Center for Alzheimer’s and Memory Disorders, Cedars-Sinai Medical Center, Los Angeles, California
• 4 Department of Psychiatry, University of Michigan, Ann Arbor
• 5 Center for Clinical Management Research, VA Ann Arbor Healthcare System, Ann Arbor, Michigan
• Viewpoint Longitudinal Management of Dementia in Primary Care Lauren R. Moo, MD JAMA Internal Medicine
• JAMA Internal Medicine Patient Page I Am Worried About Memory Loss—What Should I Know? Tamara G. Fong, MD, PhD; Stephanie S. Buss, MD JAMA Internal Medicine

Importance   Dementia affects 10% of those 65 years or older and 35% of those 90 years or older, often with profound cognitive, behavioral, and functional consequences. As the baby boomers and subsequent generations age, effective preventive and treatment strategies will assume increasing importance.

Observations   Preventive measures are aimed at modifiable risk factors, many of which have been identified. To date, no randomized clinical trial data conclusively confirm that interventions of any kind can prevent dementia. Nevertheless, addressing risk factors may have other health benefits and should be considered. Alzheimer disease can be treated with cholinesterase inhibitors, memantine, and antiamyloid immunomodulators, with the last modestly slowing cognitive and functional decline in people with mild cognitive impairment or mild dementia due to Alzheimer disease. Cholinesterase inhibitors and memantine may benefit persons with other types of dementia, including dementia with Lewy bodies, Parkinson disease dementia, vascular dementia, and dementia due to traumatic brain injury. Behavioral and psychological symptoms of dementia are best treated with nonpharmacologic management, including identifying and mitigating the underlying causes and individually tailored behavioral approaches. Psychotropic medications have minimal evidence of efficacy for treating these symptoms and are associated with increased mortality and clinically meaningful risks of falls and cognitive decline. Several emerging prevention and treatment strategies hold promise to improve dementia care in the future.

Conclusions and Relevance   Although current prevention and treatment approaches to dementia have been less than optimally successful, substantial investments in dementia research will undoubtedly provide new answers to reducing the burden of dementia worldwide.

Read More About

Reuben DB , Kremen S , Maust DT. Dementia Prevention and Treatment : A Narrative Review . JAMA Intern Med. Published online March 04, 2024. doi:10.1001/jamainternmed.2023.8522

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147 Dementia Essay Topics

🏆 best essay topics on dementia, ✍️ dementia essay topics for college, 👍 good dementia research topics & essay examples, 🎓 most interesting dementia research titles, 💡 simple dementia essay ideas, ❓ research questions about dementia.

• Pain Management in Patients With Dementia
• Diagnosis and Management of Dementia
• Alzheimer and Dementia Patients Nursing Care
• Dementia: Treatment and Management
• Dementia: Ertha Williams’ Case Analysis
• Alzheimer’s Disease and Dementia Description
• Communication Strategies in Dementia Patients
• Participatory Horticultural Therapy for Dementia Horticultural therapy is effective at reducing agitated behavior, stabilizing emotions, and increasing social interaction in patients diagnosed with dementia.
• Dementia and Its Controversial Treatment Dementia is a progressive decline in cognitive ability, an ailment commonly thought to be inseparable from the concept of the elderly.
• Dementia – Health Issues and Caregiver Burden Dementia is a term used to collectively describe a wide range of conditions that lead to cognitive decline, memory impairment, and other brain disorders.
• Dementia Patients: Communication Strategy and Techniques The specialists advise using slow and simple gestures not to produce the feeling of agitation in a person with dementia.
• Care Services for Elderly People with Dementia in China This paper is a critical review of the report that determines the state of the supportive and health services available to older people with dementia in Rural China.
• Dementia: Dangers and Complications Memory lapses, lack of control over one’s actions, and decreased brain function do not let one underestimate the dangers of dementia.
• Dementia and Alzheimer’s Disease While Alzheimer’s disease can be found in every state, Texas’ statistics indicate the special prevalence of the condition, making dementia a permeating public health issue.
• Feeding Patients With Dementia or Alzheimer’s Disease The effectiveness of probes in feeding persons with dementia/Alzheimer’s disease remains high. However, because of the risks, other less invasive methods are recommended.
• Care for Dementia Patients in Nursing Homes Unlike pharmacological dementia management, the non-pharmacological approach help reduces pain without risks associated with drug administration.
• Healthcare Program: Informational Campaign on Dementia The role of nurses shall not be underestimated when it comes to designing and implementing healthcare programs aimed to improve the well-being of the general population.
• Cognitive-Behavioral Therapy: Dementia and Geriatric Cognitive Disorders Group therapy is an evidence-based psychotherapy method that helps solve many problems, including relationship issues and personal difficulties.
• Patient-Centered Care in a Dementia Unit Patient-centered care implies the consideration of the individual needs, preferences, and abilities of each individual who seeks assistance.
• Dementia-Associated Pain Management Guidelines People suffering from dementia experience physical pain; however, they may not be able to communicate this due to their declining brain functionalities.
• Communication Challenges in Vascular Dementia and Dysphagia When residents do not understand me, I can become more creative by limiting potential distractions to them from my response concerning a given issue.
• Preparing a Podcast on Dementia and Alzheimer Alzheimer’s disease (AD) and dementia is the podcast’s topic, and the objective is to inform the aged group, which is the target group, about the disease.
• Lewy Body Dementia: Diagnosis/Condition LBD is a condition that leads to the development of dementia and which predominantly affects people over the age of 50.
• Lewy Body Disease in Aging Patients With Dementia By using extensive professional support, as well as active education of family members, one can improve the quality of Lewi Body Disease patients’ lives significantly.
• Dementia Disease and Its Physiological Effects The rarest manifestations for people with dementia are euphoria and hallucinations. The significant clinical presentations of this condition are depression, apathy, and anxiety.
• Dementia, Bladder Infection and Other Nursing Issues This paper discusses five major issues for nurses, which are dementia, bladder infection, immobility, anxiety, blindness, and discusses a nursing process for each.
• Therapeutic Interventions for the Older Adult With Depression and Dementia The paper researches the therapeutic interventions which relevant for the older people with depression and dementia nowadays.
• Alzheimer’s Disease and Dementia Dementia is considered a general term for impairments in remembering, moving, and thinking that serve as obstacles in a person’s everyday activity.
• Effects of Music Therapy on the Behavioral and Psychological Symptoms of Dementia This paper explores the clinical effectiveness of music therapy in mitigating the behavioral and psychological effects of dementia on patients and caregivers.
• Mindfulness Interventions for Dementia Patients Mindfulness-based interventions for patients with dementia are expected to develop their flexibility and broaden their attention, leading to positive emotions and stress reduction.
• Dementia of Alzheimer’s Type and Diagnostic Criteria Alzheimer’s disease is one of the major debilitating brain diseases whose effects are loss of memory and important mental functions among patients.
• Behavioral Disturbances in Dementia Delirium and agitated depression can occur with dementia. Delirium and dementia have similar symptoms; however, delirium is a confusion that occurs and goes away rather quickly.
• Dementia of Alzheimer’s Type: 10 Warning Signs Dementia is a protracted deterioration in memory, thinking, and reasoning competence. Alzheimer’s disease usually manifests in patients after the age of 60.
• Dementia of Alzheimer’s Type: Signs and Symptoms This paper seeks to analyze dementia that comes about as a result of Alzheimer’s disease. The signs and symptoms of the disease will also be discussed, as well as its stages.
• The Case of Dementia of the Vascular Type The paper submits a brief review of needs and rationales for each of the patterns for this case of dementia of the vascular type.
• Dementia – The Disease of the Older Generation The research paper explores the ways in which the quality of life of patients with dementia could be improved.
• Donepezil for Dementia Due to Alzheimer’s Disease by Govind The article ‘Donepezil for Dementia Due to Alzheimer’s Disease’ discusses the implementation of donepezil for the treatment of Alzheimer’s disease and dementia in general.
• Mother-Adult Daughter Relationships Within Dementia Care The research is devoted to the mother-daughter relationships and the perspectives of women who receive care from their adult daughters.
• Women With Dementia Receiving Their Daughters’ Care The article is devoted to the necessity of home care for people with dementia and provides interviews of people who have to live with relatives suffering from dementia.
• Diagnosing Dementia in Older Patients Many older people of various occupations receive the ‘dementia’ diagnosis. The patient has trouble recalling the names of his family members, remembering his room number, etc.
• Frontotemporal Dementia and Alzheimer Diseases The study measured and compared the balance and gait characteristics of patients with possible FTD and AD to those of a control group.
• Falls in Alzheimer’s and Dementia Older Patients The authors introduced new methods to prevent falls among older patients with Alzheimer’s disease and frontotemporal dementia.
• Patients with Frontotemporal Dementia and Alzheimer Diseases The article discusses the research study aimed at the identification of the influence of gait and balance parameters on the condition of people with Alzheimer’s disease and frontotemporal dementia.
• Falls in Patients with Dementia and Alzheimer’s In their study, Velayutham et al. consider the opportunities for reducing the threat of falls among patients with Alzheimer’s disease.
• Balance and Gait in Dementia and Alzheimer’s Patients The study by Velayutham et al. aims to investigate how Alzheimer’s disease (AD) and Frontotemporal dementia (FTD) affect elderly patients’ gait and balance.
• Dementia: Evaluation of an Epidemiological Problem Individuals with dementia experience memory loss and the reduction of cognitive abilities caused by their brain’s degenerative processes.
• Dementia Symptoms and Awareness in Nurses The present paper discusses a study that intends to improve the awareness of the Behavioral and Psychological Symptoms of Dementia (BPSD) in nurses.
• Patients with Dementia: Communication Techniques Dementia is a difficult condition and can complicate the process of receiving care. The techniques provided in the article appear to be effective.
• Falls Prevention in Patients With Dementia in Nursing Homes The problem of falls in the older adults with dementia remains the complicated issue despite considerable efforts aiming to improve the situation.
• Hospital Staff-Dementia Patients Interactions Some healthcare providers do not use effective approaches to communicate with patients who have dementia. To improve communication, one can use a range of techniques.
• Communication with Patients with Dementia In their article “Pilot testing an educational intervention to improve communication with patients with dementia,” the authors suggest certain communication techniques.
• Lewy Body Dementia, Its Symptoms and Treatment LBD occurs as the so-called Lewi bodies, i.e. alpha-synuclein aggregates of protein, start developing in nerve cells in the substantia nigra or cortex of the brain.
• Diabetes and Dementia Relationships and Nursing The article discusses the possible links between the two illnesses, as well as the risk of developing one of the conditions when already having the other.
• Client-Oriented Approach in Dementia Diagnosis The cultural and demographic backgrounds affect the diagnostic procedures. It takes a different amount of time to diagnose dementia in different patients.
• Health and Social Care for Older People Suffer From Dementia in the UK This paper analyzes the impacts of the reduction of the fund on older people and the unmet social care services, particularly the nursing home services in the UK.
• Dementia with Lewy Bodies and Its Treatment This paper is devoted to dementias and the ways of treating them. Particular attention is paid to dementia with Lewy bodies (DLB).
• Dementia of the Alzheimer’s Type This essay explores the Dementia of the Alzheimer’s type by providing an insight into aspects such as age of disease onset, warning signs, disease stages.
• Falls Among Older Persons With Dementia
• Dementia: Alzheimer’s Disease and Brain Changes
• Comparison Between Dementia and Delirium
• Alzheimer’s Disease and Its Relation With Dementia
• Blood Sugar Levels and Dementia
• Gibbs Reflective Cycle Dementia Care
• Equality Diversity and Inclusion in Dementia Care Practice
• Patient-Centered Pain Control of Elderly People With Dementia
• Can Cognitive Training Slow Down the Progression of Dementia?
• Risk Factors for Incident Dementia Among Older Cubans
• Dementia Problem Behavior and the Production of Informal Caregiving Services
• Dementia and Its Effects on Mental Health
• Physical Restraints for Dementia Patients
• Challenges for Professional Care of Advanced Dementia
• Bilingualism Delays the Onset of Dementia
• Dementia vs. Alzheimer’s Disease
• Anger Management Therapy for Dementia Patients
• Can Medication Alter the Course of Dementia?
• Patients With Dementia and Cognitive Impairment
• Dementia and Its Effect on the Function of the Brain
• Children With Dementia and Parkinson‘s Disease
• Dementia and the Ageing Population
• Indicated Causes and Symptoms of Senile Dementia
• Music and Dementia and Alzheimer‘s Disease
• Mindfulness Training for Carers of People With Dementia
• End-Of-Life Decision Making for Nursing Home Residents With Dementia
• Dementia, Help With Financial Management, and Well-Being
• Person-Centered Care For Dementia Patients
• Dementia Patients and Sexual Compulsion
• Dementia Effects on the Elderly and Their Caregivers
• Both Autism and Dementia in Terms of Diagnosis and Treatment
• The Alzheimer’s Disease and the Frontotemporal Dementia
• Determining Modifiable Risk Factors of Dementia
• Communication With Individuals Who Have Dementia
• Dementia: Brain and Self-Care Activities
• Pathways Connecting Late-Life Depression and Dementia
• Imaging Mild Cognitive Impairment and Dementia in Parkinson’s Disease
• Dementia Care Aging Innovation
• Enhancing Cognition Before Clinical Symptoms of Dementia
• Caring for Patients With Dementia
• Biomarkers for Early Diagnosis of Dementia
• Alzheimer’s Disease and Relate Dementia Reform Health Care
• Health Organisations for Dementia in New Zealand
• Dementia and Its Connection With Memory Loss
• Biomarkers for Dementia, Fatigue, and Depression in Parkinson’s Disease
• Alzheimer’s Dementia Posterior Cortical Atrophy
• Behavioral and Psychological Symptoms of Dementia
• Longitudinal Associations Between Serum Cytokine Levels and Dementia
• Neuro Protective Effect and Attenuation of Dementia
• Dementia and the Different Parts of the Brain Affected
• Observational Pain Assessment Scales for People With Dementia
• The Care for Dementia Patients and Its Positive Impact on Their Lives
• Genetic Dementia Alzheimer’s Disease Gene
• Technology for the Elderly With Dementia
• Cerebrum and Dementia Care
• Exploration Deficits Under Ecological Conditions as a Marker of Apathy in Frontotemporal Dementia
• Dementia Care Pathway-People With Learning Disability
• Environmental Factors That Affect the Risk of Developing Dementia
• Dementia: Alzheimer’s Disease and Loved Ones
• Brain Injury and Dementia in Pakistan: Current Perspectives
• Are Many Retirees With Dementia Lacking Help?
• What Autoimmune Diseases Cause Dementia?
• Why Does Early Retirement Increase the Risk of Dementia?
• Do Retirees With Dementia Need Financial Assistance?
• What Are Pharmacological Interventions for Dementia?
• Why Is Early Diagnosis for Dementia Important?
• Can Dementia Be Cured if Caught Early?
• What Is an Early Indicator of Dementia?
• Does a Brain Scan Show Dementia?
• What Is the Most Important Thing in Caring for Dementia Patients?
• Why Does a Head Injury Cause Dementia?
• How Does Medication Affect Dementia?
• What Medication Worsens the Symptoms of Dementia?
• Can Dementia Be Brought on by Medication?
• What Are the Social Needs of a Dementia Patient?
• Is There a Link Between Mental Health and Dementia?
• What Are the Three Behavioral Problems Associated With Dementia?
• Is Dementia a Psychiatric or Neurological Disorder?
• What Does a Psychiatrist Do for Dementia?
• Can Dementia Cause Nasty Behavior?
• What Are Signs That Dementia Is Getting Worse?
• How Do Dementia Patients Deal With Inappropriate Behavior?
• At What Stage of Dementia Does Aggression Occur?
• What Are Some Common Behaviors Seen in a Person With Dementia?
• Should a Dementia Patient See a Psychiatrist?
• At What Stage Do Dementia Patients Forget Family Members?
• What Is the Life Expectancy of Someone With Parkinson’s and Dementia?
• How Do You Know When Someone With Dementia Is Close to Death?
• Is There a Link Between Parkinson’s Disease and Dementia?
• How Does Dementia Influence a Person’s Care Needs?

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These essay examples and topics on Dementia were carefully selected by the StudyCorgi editorial team. They meet our highest standards in terms of grammar, punctuation, style, and fact accuracy. Please ensure you properly reference the materials if you’re using them to write your assignment.

This essay topic collection was updated on January 5, 2024 .

129 Alzheimer’s Disease Essay Topics & Examples

If you’re writing about patients with memory loss or dementia care and treatment, this article will be of use. Our team has prepared Alzheimer’s disease essay examples and topics below.

🏆 Best Alzheimer’s Disease Essay Examples & Topics

💡 most interesting alzheimer’s disease topics to write about, 📌 simple & easy alzheimer’s disease research topics, 👍 good research topics about alzheimer’s disease, ❓ research questions about alzheimer’s disease.

• Alzheimer’s Disease, Its Nature and Diagnostics According to the Alzheimer’s Association, this condition is the sixth leading cause of lethal outcomes in the United States. The most frequent symptoms of Alzheimer’s disease include problems with memory, reasoning, thinking processes, perception, and […]
• The Case Study of Patient With Late-Stage Alzheimer’s Disease In the majority of cases of Alzheimer’s, it has been shown that patients are unable to make decisions on their own and are also unable to communicate their assent verbally.
• Therapeutic Dogs, Dementia, Alzheimer’s and Fluid Intelligence It is worth noting that with dementia, the patient has a speech disorder and a personality change in the early stages of the pathology.
• The Alzheimer’s Association Dementia Care Practice Therefore, achieving the philosophy and recommendations of the association is a shared responsibility between doctors, patients, and caregivers. Ultimately, CAPD tests the functionalities of the patient ranging from the psychomotor activities, perceptions, awareness, and orientations, […]
• Dementia, Alzheimer, and Delirium in an Elderly Woman Additionally, she struggles with identifying the appropriate words to use in dialogue and changes the topic. Timing: While in the middle of conversations and public places like supermarkets.
• Alzheimer’s Disease Diagnosis and Intervention The accumulation of plaques and tangles in the brain is a hallmark of the disease, resulting in the death of neurons and a decline in mental capacity.
• Alzheimer’s Disease: Assessment and Intervention The caregiver is recommended to install safety locks and alarms on all doors and windows to prevent the patient from leaving the apartment without supervision.
• Diagnosis of Alzheimer’s or Mild Cognitive Impairment Additionally, it could be mild cognitive impairment as the state shares symptoms with early-onset Alzheimer’s, and if there would be a decline of the signs in the future.
• Management of a Patient With Alzheimer’s: Case Study The correlation between this issue and the probability of the emergence of AD in elderly citizens is proved by the scholars who examined the impact of the quality of air on a person’s health.
• Bilinguals’ Cognitive-Linguistic Abilities and Alzheimer’s Disease This irregularity is reflected in the preserved linguistic abilities, including code-switching and semantic fluency, and the declined functions in translation, picture naming, and phonemic fluency, calling for improved therapy and testing practices.
• Managing Dementia and Alzheimer’s Disease The PICOT question is “In the care of Alzheimer’s and dementia patients, does integrated community-based care as compared to being in a long-term care facility improve outcome throughout the remainder of their lives”.
• Pathophysiology of Alzheimer’s Disease The study will discuss the pathophysiology of Alzheimer’s disease, such as risk factors, cellular involvement, genetic influences, and the interventions of the available therapy’s pharmacological Interventions.
• Alzheimer’s Disease: Definition, Stages, Diagnosis Alzheimer’s disease is the most common type of dementia, and it is a condition in which the brain stops appropriately performing its functions.
• Fall Risk Assessment of Alzheimer’s Patient The nurse answers questions about the old lady helps fill the Stay Independent brochure and assists the observing physician in carrying the various clinical tests on the patient.
• Alzheimer’s Disease in an Iranian Patient The patient in the company of his son returns to the clinic after four weeks. Since the patient shows no side effects of the disease and an increase in Exelon to 6 mg orally BID […]
• Mr. Akkad and Alzheimer’s Disease: Case Study The onset of the symptoms is reported to have been within the past two years, but the situation has begun to deteriorate, prompting Mr.
• Alzheimer’s Disease: History, Mechanisms and Treatment Nevertheless, researchers state that the development of Alzheimer’s is impacted by the formation of protein plaques and tangles in the brain.
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How Do We Talk With People Living With Dementia About Future Care: A Scoping Review

Mandy visser.

1 Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands

Hanneke J. A. Smaling

2 University Network for the Care Sector Zuid-Holland, Leiden University Medical Center, Leiden, Netherlands

Deborah Parker

3 Improving Palliative, Aged and Chronic Care Through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Ultimo, NSW, Australia

Jenny T. van der Steen

4 Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, Netherlands

Associated Data

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author/s.

A diagnosis of dementia often comes with difficulties in understanding a conversational context and expressing how one feels. So far, research on how to facilitate advance care planning (ACP) for people with dementia focused on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogate decision makers, e.g., family members. The aim of this review is to provide a better scope of the existing research on practical communication aspects related to dementia in ACP conversations. In November 2020, seven databases were searched to select papers for inclusion (Proquest, Medline, Embase, Scopus, Psycinfo, Amed, and Cinahl). This search was updated in December 2021. The search strategy consisted of three tiers (related terms to “dementia,” “communication” and “ACP”), intersected by using the Boolean term “AND,” and resulted in 787 studies. Two researchers followed explicit criteria for two sequential levels of screening, based on titles and abstracts and full papers. A total of 22 studies were included for data analysis. Seven topics (i.e., importance of having ACP conversations, knowledge gap, inclusion of people with dementia in ACP conversations, policy vs. practice, adapting to cognitive changes, adapting to psychosocial changes, and adapting to emotional changes) emerged clustered around two themes (i.e., communicating with people with dementia in ACP, and changes in communication due to dementia). This scoping review provides practical suggestions for healthcare professionals to improve ACP communication and uncovered gaps in research on communication aspects related to dementia in ACP conversations, such as non-verbal behavior, timing and implementation, and personal preferences.

Introduction

Advance care planning (ACP) can be described as the process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding medical care ( Sudore et al., 2017 ). Performing ACP in early stages of any disease potentially increases the likelihood that a patient’s wishes will be incorporated into care decisions, and reduce unwanted hospitalization and intensive treatments at the end of life [ Detering et al., 2010 ; Silveira et al., 2010 ; for a systematic review on effects of ACP on end-of-life care, see Brinkman-Stoppelenburg et al. (2014) ]. ACP has been associated with a range of positive end-of-life outcomes. Although the evidence base is still limited, this could be especially relevant for people with dementia, as they are likely to experience a prolonged period of cognitive decline, starting in early stages of the disease trajectory [for a systematic review on effects of ACP in improving end-of-life outcomes for people with dementia, see Dixon et al. (2018) ].

Changes in cognitive abilities caused by dementia may not only impact decision-making capacities, but are also likely to affect the ability to process information and to participate in conversations. Difficulties in understanding a conversational context and expressing feelings may lead to several communication challenges, depending on the dementia condition ( Rousseaux et al., 2010 ; Visser et al., 2020 ). For people with dementia, a simple chat with family members can be difficult, let alone having conversations with healthcare professionals about ACP. As a result, it is not very common for healthcare professionals to initiate ACP conversations with people with dementia ( Azizi et al., 2022 ), and if any important ACP topics need to be discussed, they gradually turn to a proxy decision maker, like a family caregiver. However, people with dementia should have an active role as long as possible as well, when planning their future care ( Van den Block, 2019 ). Healthcare professionals may adapt their communication strategies in ACP conversations to the cognitive abilities of people with dementia.

So far, research on how to facilitate ACP for people with dementia specifically focuses on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogates ( Ampe et al., 2016 ; Tilburgs et al., 2018 ). As Van den Block (2019) describes in her editorial on the current state of research on ACP for people with dementia, much of the existing literature emphasizes on answering questions concerning the “what” of ACP, rather than understanding the “how” of ACP communication. Questions such as “How do we overcome the barriers for ACP conversations with people with dementia?” and “How to tailor communication in order to facilitate ACP conversations with people with dementia?” are still to be answered. A better scope of the existing research on communication aspects related to dementia in ACP conversations is needed to uncover any gaps in research in order to formulate communication strategies for healthcare professionals to improve their ACP practices, impacting the lives of people with dementia and their family members.

The aim of this scoping review is to examine how communication difficulties related to dementia are addressed in the literature (following the explicit scoping review method by Arksey and O’Malley, 2005 ). This paper serves as a starting point for future research and clinical practice, highlighting the contribution of involving people with dementia in making decisions and plans around their care.

Eligibility Criteria

The study involved original empirical research papers focusing on communication and conversations about ACP or future palliative care, excluding discussions of immediate care relief. Subjects in these studies were to be people with dementia, family caregivers and/or healthcare professionals caring for people with dementia. Following scoping methods, no papers were excluded based on quality assessments of design and analyses, and no meta-analyses were used to aggregate findings ( Arksey and O’Malley, 2005 ).

Information Sources and Search

In November 2020, a total of seven databases were searched to select papers for inclusion (Proquest, Medline, Embase, Scopus, Psycinfo, Amed and Cinahl). This search was updated in December 2021. Three tiers of the search strategy (related terms to “dementia,” “communication” and “ACP”) were intersected by using the Boolean term “AND,” as presented in Table 1 .

Overview search strategy.

1 Tier 1 is based on the most common forms of dementia according to Alzheimer’s Association ( https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia ): Alzheimer’s disease, frontotemporal dementia, vascular dementia, Lewy body disease, Parkinson’s disease.

Paper Screening, Extraction and Analysis

Two sequential levels of screening were undertaken independently by two researchers (MV and HS), based on: (1) titles and abstracts; and (2) full-text papers. Any disagreement was reconciled by consensus. Inclusion criteria were as follows: (1) papers must describe original empirical research; (2) involve human subjects that have been diagnosed with dementia or care for people diagnosed with dementia; (3) include communication aspects related to dementia in either variables or outcomes, and (4) study conversations around future palliative care or ACP. Papers were excluded (1) if published in a language other than English, (2) if the study focused on nursing homes residents or older people in general (with no results reported on an identifiable subgroup of people with dementia). and (3) focused on discussions of immediate care relief. An initial data extraction was conducted by MV, focusing on type of research, participants, setting, and aims of the papers. Following this, two researchers (MV and JS) independently performed an initial content analysis to map out potential topics related to the aim of this research. The research team (MV, HS, JS, and DP) engaged in a iterative process of discussing findings related to the topics to enhance analytical rigor and achieve consensus on outcomes.

Search Results and Study Characteristics

As illustrated in Figure 1 , our search strategy resulted in 1,728 references. After removing duplicates, 756 references were imported to Covidence systematic review software (Veritas Health Innovation, Australia) to manage abstract- and full paper screening. After the title and abstract screening, 735 of 787 papers were excluded as they did not met all inclusion criteria as described above; in the full-text screening, 30 out of 52 papers were excluded for several reasons [i.e., not being accessible (6), or not describing original empirical research (11), not reporting on communication aspects (6), or palliative care or ACP (2) and not reporting dementia specific outcomes (5), leaving 22 papers for analysis].

PRISMA flowchart procedure paper screening.

As listed in Table 2 , of the 22 included papers, 13 were published since 2016 ( Ampe et al., 2016 , 2017 ; Morin et al., 2016 ; Sinclair et al., 2016 ; Aasmul et al., 2018 ; Givens et al., 2018 ; Hill et al., 2018 ; Tilburgs et al., 2018 ; de Vries and Drury-Ruddlesden, 2019 ; Goossens et al., 2020a , b ; Sussman et al., 2020 ; Yeh et al., 2021 ). The majority of papers described qualitative studies ( n = 14), using methods such as interviews, focus groups and ethnographic observations ( Godwin and Waters, 2009 ; Johnson et al., 2009 ; Sims-Gould et al., 2010 ; Goodman et al., 2013 ; Poppe et al., 2013 ; Beernaert et al., 2014 ; Ampe et al., 2016 ; Givens et al., 2018 ; Hill et al., 2018 ; Tilburgs et al., 2018 ; de Vries and Drury-Ruddlesden, 2019 ; Goossens et al., 2020a ; Sussman et al., 2020 ). Only three papers described quantitative methods; two cluster randomized controlled trials ( Ampe et al., 2017 ; Goossens et al., 2020b ) and one survey described a single survey ( Morin et al., 2016 ). Two studies used a mixed methods approach ( Karel et al., 2007 ; Yeh et al., 2021 ) and two Delphi studies were included ( van der Steen et al., 2014 ; Sinclair et al., 2016 ; Sussman et al., 2020 ). Papers described studies that were conducted in ten different countries, with five studies conducted in Belgium ( Beernaert et al., 2014 ; Ampe et al., 2016 , 2017 ; Goossens et al., 2020a , b ), four in the United Kingdom ( Godwin and Waters, 2009 ; Goodman et al., 2013 ; Poppe et al., 2013 ; Sinclair et al., 2016 ) and four in the United States of America ( Kayser-Jones, 2002 ; Karel et al., 2007 ; Givens et al., 2018 ; Yeh et al., 2021 ). Other studies were conducted in Canada ( Sims-Gould et al., 2010 ; Hill et al., 2018 ; Sussman et al., 2020 ), Norway ( Aasmul et al., 2018 ), France ( Morin et al., 2016 ), Netherlands ( Tilburgs et al., 2018 ), Australia ( Johnson et al., 2009 ) and New Zealand ( de Vries and Drury-Ruddlesden, 2019 ). One paper used Delphi study methodologies including different countries across the world ( van der Steen et al., 2014 ).

Papers included.

*Quant, quantitative research; Qual, qualitative research; Mixed, mixed methods (both qualitative and quantitative research); CRTC, cluster randomized controlled trial.

A total of seven topics were identified clustered around two themes. The first four topics reflect on communicating ACP with people with dementia in general (i.e., covering the importance of ACP for people with dementia, the knowledge gap, the inclusion of people with dementia in ACP conversations, and how daily practice may differ from policy). Three more topics emerged around cognitive, psychosocial and emotional changes due to dementia, and how to adapt communication strategies to improve ACP conversations with people with dementia (see Figure 2 for an overview).

Topics around communication aspects related to dementia and ACP found in the scoping review.

Topic 1: Importance of Having Advance Care Planning Conversations

All papers underline that ACP is central to high-quality, holistic end-of-life care. Five papers in total specifically focused on the importance of having ACP conversations ( Kayser-Jones, 2002 ; Sims-Gould et al., 2010 ; Goodman et al., 2013 ; van der Steen et al., 2014 ; Sinclair et al., 2016 ). It is likely to reduce unnecessary interventions, promotes comfort and increases clarity in important decision making (e.g., Goodman et al., 2013 ). An ethnographic study by Kayser-Jones (2002) showed that “ lack of attention to cultural needs, cognitive status, inadequate staffing, and inappropriate and inadequate communication between healthcare providers and nursing home residents and their families were the predominant factors that influenced the experience of dying .” The two Delphi studies showed that proactive conversations around care and making decisions are essential for quality of care at the end of life ( van der Steen et al., 2014 ; Sinclair et al., 2016 ). These conversations should be part of a continuous process of discussing values in life, rather than the single act of completing a form about care preferences ( Goodman et al., 2013 ; Sinclair et al., 2016 ). To do so, ongoing communication amongst healthcare professionals, people with dementia and family caregivers appears to be essential ( Sims-Gould et al., 2010 ).

Topic 2: Knowledge Gap

Although it is clear that communication about care between healthcare professionals and patients is an important determinant of quality end-of-life care, so far, characteristics and determinants of good quality communication have been hard to identify. Two papers described the lack of knowledge on how to provide good quality communication ( Goodman et al., 2013 ; Aasmul et al., 2018 ). For example, Goodman et al. (2013) interviewed 18 people with dementia about their ACP preferences, and they found it is unclear how people with dementia and their current experiences can inform planning and decision making around ACP. Although numbers of empirical studies on ACP with people with dementia are increasing, it seems that well-powered controlled trials investigating communication between people with dementia and healthcare professionals in long term care facilities (LTCF) are needed ( Aasmul et al., 2018 ).

Topic 3: Inclusion of People With Dementia in Advance Care Planning Conversations

Five papers showed that people with dementia are rarely included when discussing ACP ( Johnson et al., 2009 ; Goodman et al., 2013 ; Poppe et al., 2013 ; Ampe et al., 2016 ; Givens et al., 2018 ). Ampe et al. (2016) clarified that healthcare professionals (1) were more comfortable to talk with family caregivers, and (2) underestimated the capability of people with dementia themselves to talk about preferences related to ACP. However, a decision made by a family caregiver may be inconsistent with the person with dementia their wishes, and family caregivers state making decisions on behalf of someone else around their end-of-life care is difficult ( Poppe et al., 2013 ). Therefore, there is a need to invest in including people with dementia discussing their preferences around ACP.

Topic 4: Policy Versus Practice

Only two studies included in this review ( Ampe et al., 2016 , 2017 ) show a lack of strategies for implementing ACP conversations in dementia care. Apparently, organizational healthcare policies concerning ACP are present and promising, although often not implemented in daily practice of healthcare professionals. For example, although the intervention “We DECide” by Ampe et al. (2017) positively influenced the intension of performing ACP in participating dementia care units, the actual practice did not improve. Healthcare professionals only managed to involve residents or their family caregivers on a baseline skill level. It is clearly not enough for healthcare professionals to understand and acknowledge evidence-based practices of ACP, and practically oriented training is required to change habits and behaviors. Ampe et al. (2017) suggest adding a strong focus on the organizational context of ACP training (e.g., by including the management of the team in discussions on the topic, or by organizing in service training for trainers).

Topic 5: Adapting to Cognitive Changes

A total of eleven papers describe how changes in cognitive abilities with people with dementia may affect the way they participate in ACP, or how to deal with conversation difficulties that arise because of cognitive changes ( Karel et al., 2007 ; Godwin and Waters, 2009 ; Johnson et al., 2009 ; Goodman et al., 2013 ; Poppe et al., 2013 ; van der Steen et al., 2014 ; Ampe et al., 2016 ; Sinclair et al., 2016 ; Aasmul et al., 2018 ; Tilburgs et al., 2018 ; Goossens et al., 2020a ). Older people living with dementia show loss of memory, communication, orientation, control, autonomy, independence, self-esteem and relationships ( Goodman et al., 2013 ). Poppe et al. (2013) stated this may affect the way people with dementia make decisions and how they are informed. Johnson et al. (2009) showed that “ dementia has a trajectory that causes a diminishing ability for the person to express their care needs and treatment wishes .” In their study, Ampe et al. (2016) found that LCTF residents with dementia were no longer capable of discussing important decisions. Moreover, healthcare professionals appear to underestimate communication skills of people with dementia, and their ability to process abstract concepts ( Godwin and Waters, 2009 ). According to van der Steen et al. (2014) communicating with patients and families of people with dementia requires special skills due to cognitive problems that come with dementia complicating decision making. We found several suggestions to overcome these communication problems related to cognitive changes:

Question Formulation

After interviewing general practitioners, Tilburgs et al. (2018) suggest ACP should be tailored to the cognitive level of the person with dementia by asking closed instead of open questions. Communication training may help healthcare professionals to remain aware of the way they formulate questions ( Aasmul et al., 2018 ). Moreover, people with dementia should be offered the time to prepare themselves for certain questions and the ability to process them ( Goossens et al., 2020a ). Apparently, the way questions are asked in ACP conversations should be tailored according to dementia severity. However, interestingly, Karel et al. (2007) found no differences between participants with mild dementia and control participants (without dementia) with regards to question formulation in their survey research. People with mild dementia were able to answer open-ended questions about quality of life and responded to forced-choice questions regarding healthcare values.

Timely Initiation

According to Poppe et al. (2013) , ACP is usually completed in the last 6 months of life, which may cause problems for people diagnosed with dementia: decision-making capacity and ability to communicate decrease as the disease progresses. Therefore, the initiation of ACP should happen as early in the disease trajectory as possible, preferably shortly after diagnosis, while people with dementia still have the capacity to make informed decisions ( Aasmul et al., 2018 ; Tilburgs et al., 2018 ), but only when they are ready to do so ( Sinclair et al., 2016 ). Ampe et al. (2016) found that rather than to wait for crisis situations, ACP should be discussed before. They mention admission in a LTCF to be a good moment to talk about ACP. Godwin and Waters (2009) underlined the importance to keep a conversation ongoing; we cannot presume views and conceptions around ACP remain unchanged.

Non-verbal Behavior

Several papers underline the importance of observing behavior of people with dementia while in conversation about ACP. Healthcare professionals should not only focus on well formulated (spoken) views ( Ampe et al., 2016 ). If we neglect non-verbal behavior, we may miss important connotations ( Godwin and Waters, 2009 ). Recognition of behaviors as potential signs of discomfort need to be observed and addressed ( Johnson et al., 2009 ).

Topic 6: Adapting to Psychosocial Changes

A total of nine papers discussed how psychosocial changes due to dementia may affect ACP conversations or how to overcome difficulties that arise because of these changes ( Kayser-Jones, 2002 ; Karel et al., 2007 ; Johnson et al., 2009 ; Goodman et al., 2013 ; Poppe et al., 2013 ; Ampe et al., 2016 ; Aasmul et al., 2018 ; Tilburgs et al., 2018 ; Goossens et al., 2020a ). Awareness of dementia may affect one’s self-esteem and confidence in a negative way ( Goodman et al., 2013 ). Still, the opportunity to participate in ACP and contribute to choices around their care may help people with dementia feel more empowered ( Goossens et al., 2020a ). We found several suggestions to improve one’s confidence in ACP conversations:

Familiar People

A well-established relationship with a healthcare professional may have a positive effect on the course of an ACP conversation ( Ampe et al., 2016 ). Moreover, follow-up conversations may help to build relationships further, and are also necessary to maintain an ACP routine ( Aasmul et al., 2018 ). However, several papers underline familiarity with the healthcare professional is not as important for successful ACP communication as well-trained and empathetic conversation partners ( Karel et al., 2007 ; Poppe et al., 2013 ; Tilburgs et al., 2018 ). According to Karel et al. (2007) , familiarity is not essential for good ACP practice. In fact, in their study, non-familiar people who behaved attentive and empathetic, were successful in eliciting care preferences with people with dementia. This suggests more research on the relationship between healthcare professionals and people with dementia is needed.

Training of Healthcare Professionals in Effective Communication Skills

A lack of communication skills can be a barrier for conducting successful ACP conversations, such as not listening, trivializing situations and being distant in conversations ( Kayser-Jones, 2002 ; Johnson et al., 2009 ; Tilburgs et al., 2018 ; Goossens et al., 2020a ). In addition to possessing knowledge about the purpose and goals of ACP, healthcare professionals need to possess effective communication skills in order to initiate and sustain dialog on the future care of people with dementia ( Johnson et al., 2009 ; Poppe et al., 2013 ). In a study by Poppe et al. (2013) , healthcare professionals identified knowledge about dementia, available resources and knowledge of one’s own limitations as key skills and competencies for discussing ACP. Feeling confident when discussing ACP was mentioned to be important and healthcare professionals found having experience in dealing with difficult conversations increased their confidence.

Healthcare Professionals Empathy

Discussing their findings of their study on improving ACP communication between healthcare professionals and people with dementia, Aasmul et al. (2018) stated that a low level of empathy with staff may have affected ACP conversations in a negative way. This fits well with work of Tilburgs et al. (2018) , who found non-empathic attitudes by general practitioners to be a barrier of ACP with people with dementia. It seems to be important for healthcare professionals to have an empathetic attitude while talking to people with dementia about ACP.

Topic 7: Adapting to Emotional Changes

Dementia causes substantial changes in one’s life that may elicit different emotions and feelings compared to feelings people had before their diagnosis, or compared to those with other diseases. A total of ten papers reported on how emotional changes that come with dementia may possibly affect ACP conversations, or on how to overcome challenges due to these changes ( Kayser-Jones, 2002 ; Godwin and Waters, 2009 ; Poppe et al., 2013 ; Beernaert et al., 2014 ; Ampe et al., 2016 ; Aasmul et al., 2018 ; Givens et al., 2018 ; Hill et al., 2018 ; de Vries and Drury-Ruddlesden, 2019 ; Yeh et al., 2021 ). People with dementia often experience agitation, fear, confusion, and pain. This may be difficult to cope with, for themselves or those around them ( Hill et al., 2018 ). The thought of needing palliative care can be confronting, and therefore ACP conversations tend to be avoided by some ( Beernaert et al., 2014 ). In general, ACP conversations are practically oriented, and not so much focusing on emotions. Although crisis situations often contain emotional moments, there may be little room for discussing emotions when making decisions, possibly related to time pressure. This could be a missed opportunity to understand which and how emotions influence certain decisions ( Ampe et al., 2016 ). We found several suggestions to cope with emotions better in ACP conversations:

Not Avoiding the Topic

Often, in day-to-day conversations between people with dementia and healthcare professionals, safe topics and social chit-chat are most apparent ( Kayser-Jones, 2002 ). Beernaert et al. (2014) found that neither people with dementia nor healthcare professionals initiate discussion of non-acute care needs in day-to-day conversations. According to Godwin and Waters (2009) , the ability and especially the willingness of people with dementia to talk about abstract concepts such as death is underestimated with healthcare professionals. Yeh et al. (2021) underline that initiative for ACP conversations between people with dementia and healthcare professionals can also come from family caregivers.

Regular Meetings

It may be beneficial for healthcare professionals to initiate regular conversations with people with dementia to talk about ACP. Aasmul et al. (2018) suggested quarterly meetings with nursing home residents with dementia and monthly meetings with their family caregivers. According to a study in nursing homes by Ampe et al. (2016) , people with dementia should be engaged actively in the ACP process, not only when they are admitted to a LTCF, “but throughout their stay.” They state it is the responsibility of healthcare professionals to stimulate colleagues and other care workers to pick up on conversations and communicate relevant information about ACP.

Normalizing Advance Care Planning

Conversations around important topics such as end-of-life and care preferences may cause some anxiety in patients, but there is a need to normalize these kind of conversations. Poppe et al. (2013) showed that ACP conversations gave people with dementia time to think about their future. Some were relieved and less worried after discussing their preferences, and they felt supported by their family and services. It was important for them that family caregivers and healthcare professionals were attentive to their preferences. Moreover, discussing ACP within families makes room for having those conversations in an informal, day-to-day setting ( de Vries and Drury-Ruddlesden, 2019 ). According to Givens et al. (2018) , ACP conversations in family settings do not happen enough but would benefit everyone involved.

With this scoping review, we mapped existing literature on communication aspects related to dementia in ACP conversations. Seven topics (importance of having ACP conversations, knowledge gap, inclusion of people with dementia in ACP conversations, policy vs. practice, adapting to cognitive changes, adapting to psychosocial changes, and adapting to emotional changes) emerged. Practical suggestions for healthcare professionals to improve ACP communication are provided and summarized in Box 1 . This review underlines the scarcity of studies focusing on “how” to talk to a person with dementia about their ACP preferences; more research is needed on non-verbal communicative aspects of ACP conversations, timing and implementation of these conversations, and preferences of individuals with dementia related to these conversations, as results of studies so far have been inconsistent or have not given any or little attention to these topics.

BOX 1. Practical suggestions for healthcare professionals to improve ACP communication.

• Make continuous and active conversations part of the ACP practice, rather than the single act of completing a form about care preferences.

• Make an effort to include people with dementia themselves in ACP conversations.

• Tailor the questions asked in ACP conversations according to dementia severity and personal needs.

• Initiate ACP as early in the disease trajectory as possible, preferably shortly afterward the diagnosis.

• Focus not only on well formulated (spoken) views but also pay attention to non-verbal behavior of person with dementia.

• There needs to be empathy and attentive listening.

• Do not underestimate the ability and the willingness of people with dementia to talk about abstract concepts such as ACP.

• Initiate ACP conversations on a regular basis.

• Normalize talking about ACP by initiating ACP conversations in informal settings.

One topic that was mentioned in the literature several times but seems to lack empirical evidence, is how expressive behavior related to dementia may affect the process of an ACP conversation between a patient and a healthcare professional. Research underlines the importance of reading non-verbal behavior for ACP conversation processes and outcomes ( Godwin and Waters, 2009 ; Johnson et al., 2009 ; Ampe et al., 2016 ), but how to do so is still to be studied. Numerous studies show changes in expressive abilities of people with dementia [e.g., emotional expressions, review by Lee et al. (2019) ; expressions of apathy, Kumfor et al., 2018 ; and mutual eye gaze, Sturm et al., 2011 ], and may be extra prone to affect behavior in conversations around sensitive topics of ACP.

Another important topic that needs more research is timing and implementation of ACP conversations and practice. Research seems to underline the significance of “early” initiated conversations, and that initiation in care facilities may be too late to include people with dementia ( Poppe et al., 2013 ; Ampe et al., 2016 ; Sinclair et al., 2016 ; Aasmul et al., 2018 ; Tilburgs et al., 2018 ). More research is needed on how to define the right moment. Several papers suggest healthcare professionals to “have a continuous conversation” with people with dementia about ACP, and to “talk about ACP in an informal way and often.” However, it seems to be difficult to implement such suggestions in practice. Healthcare professionals often feel incapable of initiating conversations on sensitive topics like ACP and tend to avoid these ( Beernaert et al., 2014 ). Future research should have a strong focus on how to implement ACP in practice, rather than only formulating ACP policies. Also, although our findings suggest that ACP conversations are needed on a regular base, and healthcare professionals investing time seems necessary, the ideal duration of an ACP conversation remains unclear (e.g., de Vries and Drury-Ruddlesden, 2019 ).

Further research is needed on the optimal timing and frequency of conversations, but also on models of care in which healthcare professionals who are best positioned to conduct and personalize ACP, are supported to do so. A review by Piers et al. (2018) , describes evidence-based guidelines for healthcare professionals across settings in the practical application of ACP in dementia care. Amongst recommendations on topics such as documentation and end-of-life decisions, limited suggestions are made around communication strategies in ACP conversations that are in line with the recommendations as presented in Box 1 (e.g., adjust one’s communication style and content to their own level and rhythm). Still, papers included in this scoping review showed different findings with regard to the importance of familiar healthcare professionals leading ACP conversations, the effect of (lack of) empathy by the healthcare professional, and whether or when an approach should be more or less directive. Preferences for the way an ACP conversation is held may be personal, and can change over time, depending on many factors, such as cultural background or even mental conditions. For example, in some cultures, fostering autonomy of the person with dementia is important, while in other cultures, a paternalistic approach may be useful at times. As this is barely reflected in the studies included in this scoping review, future work needs to focus on personal preferences that demand a level of flexibility of healthcare professionals to adopt different approaches as needed.

This scoping review has several strengths and limitations. Our strength is that we focused specifically on communicative aspects of ACP conversations with people with dementia, uncovering significant gaps in literature and providing recommendations for research and practice. Unfortunately, most studies covered this topic within a broader scope, focusing on ACP practice related to dementia in general, leaving several important factors underexposed. No papers that were included in the scoping review focused on cultural differences as a determinant for how to communicate ACP with people with dementia, limiting the generalizability while also exposing a need for future studies on ACP to include non-Western populations. In fact, all studies included were conducted in Western high-income studies. A reason for this could be we only included papers written in English. Another complicating matter when interpreting results and recommendations of the papers included in the scoping review, was that papers referred to different ACP policies that were custom for specific countries. Legislation and guidelines at national and international level may determine how ACP is approached and is still being developed ( Alzheimer Europe, 2020 ). Still, scoping the literature, we did find a number of practical implications for ACP practice in general, to be adapted by healthcare practitioners and family caregivers, in order to improve ACP practices. Conversations about ACP should be continuous practice, with an active role for people with dementia themselves. Timing, content and form have to be tailored to their cognitive, psychosocial and emotional needs. This study underlines the need for more thorough, empirical studies that look into how to talk to people with dementia about future care.

Data Availability Statement

Author contributions.

MV, HS, JS, and DP: conceptualization. MV and HS: data curation. MV and JS: formal analysis. MV: funding acquisition and writing—original draft. HS, JS, and DP: writing—review and editing. All authors approved the final version to be published and read and agreed to the published version of the manuscript.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher’s Note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

MV received funding from the European Union’s Horizon 2020 Research and Innovation Program under the Marie Skłodowska-Curie (grant agreement no. 707404) and the Department of Public Health and Primary Care, Leiden University Medical Center (LUMC).

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How Tesla Planted the Seeds for Its Own Potential Downfall

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This is part 1 of a two-part MIT News feature examining new job creation in the U.S. since 1940, based on new research from Ford Professor of Economics David Autor. Part 2 is available here .

In 1900, Orville and Wilbur Wright listed their occupations as “Merchant, bicycle” on the U.S. census form. Three years later, they made their famous first airplane flight in Kitty Hawk, North Carolina. So, on the next U.S. census, in 1910, the brothers each called themselves “Inventor, aeroplane.” There weren’t too many of those around at the time, however, and it wasn’t until 1950 that “Airplane designer” became a recognized census category.

Distinctive as their case may be, the story of the Wright brothers tells us something important about employment in the U.S. today. Most work in the U.S. is new work, as U.S. census forms reveal. That is, a majority of jobs are in occupations that have only emerged widely since 1940, according to a major new study of U.S. jobs led by MIT economist David Autor.

“We estimate that about six out of 10 jobs people are doing at present didn’t exist in 1940,” says Autor, co-author of a newly published paper detailing the results. “A lot of the things that we do today, no one was doing at that point. Most contemporary jobs require expertise that didn’t exist back then, and was not relevant at that time.”

This finding, covering the period 1940 to 2018, yields some larger implications. For one thing, many new jobs are created by technology. But not all: Some come from consumer demand, such as health care services jobs for an aging population.

On another front, the research shows a notable divide in recent new-job creation: During the first 40 years of the 1940-2018 period, many new jobs were middle-class manufacturing and clerical jobs, but in the last 40 years, new job creation often involves either highly paid professional work or lower-wage service work.

Finally, the study brings novel data to a tricky question: To what extent does technology create new jobs, and to what extent does it replace jobs?

The paper, “ New Frontiers: The Origins and Content of New Work, 1940-2018 ,” appears in the Quarterly Journal of Economics . The co-authors are Autor, the Ford Professor of Economics at MIT; Caroline Chin, a PhD student in economics at MIT; Anna Salomons, a professor in the School of Economics at Utrecht University; and Bryan Seegmiller SM ’20, PhD ’22, an assistant professor at the Kellogg School of Northwestern University.

“This is the hardest, most in-depth project I’ve ever done in my research career,” Autor adds. “I feel we’ve made progress on things we didn’t know we could make progress on.”

“Technician, fingernail”

To conduct the study, the scholars dug deeply into government data about jobs and patents, using natural language processing techniques that identified related descriptions in patent and census data to link innovations and subsequent job creation. The U.S. Census Bureau tracks the emerging job descriptions that respondents provide — like the ones the Wright brothers wrote down. Each decade’s jobs index lists about 35,000 occupations and 15,000 specialized variants of them.

Many new occupations are straightforwardly the result of new technologies creating new forms of work. For instance, “Engineers of computer applications” was first codified in 1970, “Circuit layout designers” in 1990, and “Solar photovoltaic electrician” made its debut in 2018.

“Many, many forms of expertise are really specific to a technology or a service,” Autor says. “This is quantitatively a big deal.”

He adds: “When we rebuild the electrical grid, we’re going to create new occupations — not just electricians, but the solar equivalent, i.e., solar electricians. Eventually that becomes a specialty. The first objective of our study is to measure [this kind of process]; the second is to show what it responds to and how it occurs; and the third is to show what effect automation has on employment.”

On the second point, however, innovations are not the only way new jobs emerge. The wants and needs of consumers also generate new vocations. As the paper notes, “Tattooers” became a U.S. census job category in 1950, “Hypnotherapists” was codified in 1980, and “Conference planners” in 1990. Also, the date of U.S. Census Bureau codification is not the first time anyone worked in those roles; it is the point at which enough people had those jobs that the bureau recognized the work as a substantial employment category. For instance, “Technician, fingernail” became a category in 2000.

“It’s not just technology that creates new work, it’s new demand,” Autor says. An aging population of baby boomers may be creating new roles for personal health care aides that are only now emerging as plausible job categories.

All told, among “professionals,” essentially specialized white-collar workers, about 74 percent of jobs in the area have been created since 1940. In the category of “health services” — the personal service side of health care, including general health aides, occupational therapy aides, and more — about 85 percent of jobs have emerged in the same time. By contrast, in the realm of manufacturing, that figure is just 46 percent.

Differences by degree

The fact that some areas of employment feature relatively more new jobs than others is one of the major features of the U.S. jobs landscape over the last 80 years. And one of the most striking things about that time period, in terms of jobs, is that it consists of two fairly distinct 40-year periods.

In the first 40 years, from 1940 to about 1980, the U.S. became a singular postwar manufacturing powerhouse, production jobs grew, and middle-income clerical and other office jobs grew up around those industries.

But in the last four decades, manufacturing started receding in the U.S., and automation started eliminating clerical work. From 1980 to the present, there have been two major tracks for new jobs: high-end and specialized professional work, and lower-paying service-sector jobs, of many types. As the authors write in the paper, the U.S. has seen an “overall polarization of occupational structure.”

That corresponds with levels of education. The study finds that employees with at least some college experience are about 25 percent more likely to be working in new occupations than those who possess less than a high school diploma.

“The real concern is for whom the new work has been created,” Autor says. “In the first period, from 1940 to 1980, there’s a lot of work being created for people without college degrees, a lot of clerical work and production work, middle-skill work. In the latter period, it’s bifurcated, with new work for college graduates being more and more in the professions, and new work for noncollege graduates being more and more in services.”

Still, Autor adds, “This could change a lot. We’re in a period of potentially consequential technology transition.”

At the moment, it remains unclear how, and to what extent, evolving technologies such as artificial intelligence will affect the workplace. However, this is also a major issue addressed in the current research study: How much does new technology augment employment, by creating new work and viable jobs, and how much does new technology replace existing jobs, through automation? In their paper, Autor and his colleagues have produced new findings on that topic, which are outlined in part 2 of this MIT News series.

Support for the research was provided, in part, by the Carnegie Corporation; Google; Instituut Gak; the MIT Work of the Future Task Force; Schmidt Futures; the Smith Richardson Foundation; and the Washington Center for Equitable Growth.

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