A Qualitative Study to Characterize the Experiences of Patients and Caregivers with Dementia Diagnostic Disclosure Communication and Care Planning

Abstract

Background:

Clinician communication at the time of a dementia diagnosis often inadequately addresses patient and caregiver needs. We aimed to characterize the communication experiences of patients and caregivers affected by dementia using an evidence-based serious illness communication framework.

Methods:

We conducted semi-structured interviews of patients with dementia and caregivers. An interdisciplinary research team used thematic content analysis to identify themes.

Results:

Participants included 6 patients and 15 caregivers recruited from the community and healthcare settings (n=21; 17/21 female; n=13 White (61%); n=4 Black or African American (19%); n=4 Latino/a (19%); n=2 Asian; n=2 other). Five themes were identified. First, perceptions of respectful or disrespectful communication affect the relationship with clinicians and contributes to positive or negative communication experiences. Second, participants described the emotional impact of sudden or unsupported disclosures, in which they felt unprepared to receive the news or emotionally abandoned after diagnosis. Third, the absence of, or ambiguity around, a definitive dementia diagnosis contributes to patient and caregiver distress and to feeling dismissed by clinicians. Fourth, mixed responses to illness education and clinician recommendations after disclosure reveals the need for more personalized and comprehensive care planning. Fifth, careful consideration around the timing of prognostic communication and advance care planning discussions is necessary to meet the needs of patients and caregivers with different emotional readiness, illness beliefs, and information preferences.

Conclusion:

Dementia diagnostic disclosure would benefit from a structured yet tailored communication approach that prioritizes respectful communication, emotional support, and comprehensive care planning to meet the needs of patients and caregivers.

Introduction

The number of individuals affected by Alzheimer’s Disease and Related Dementias (ADRD) continues to increase globally and will likely rise even further with continuing demographic trends, early detection efforts, and the approval of disease-modifying therapies.¹ For patients with dementia and their caregivers, receiving a timely and comprehensive diagnosis is important for effective care, including access to medical management, specialized services, and opportunities for care planning.^2–9 In fact, a primary goal of the United States National Plan to Address Alzheimer’s Disease (NAPA) is to enhance communication, education, and support at the time of diagnosis.¹⁰ However, fewer than 50% of patients with dementia report being told their diagnosis by a clinician.^9,11 Furthermore, the diagnosis of dementia is often delayed.^12,13 Although systemic and patient and caregiver factors contribute to inadequate diagnosis (e.g., limited access to specialists, stigma around dementia, patient inability to recall),^14–16 inadequate and poor quality clinician communication are significant drivers of gaps in dementia diagnostic communication.¹⁷

Diagnostic disclosure communication in practice often inadequately addresses patient and caregiver needs.¹⁸ Studies reveal adverse patient and caregiver experiences with disclosure, including feeling unprepared to receive the information and inadequate anticipatory guidance.^2,18–22 Caregivers recruited from a specialty memory clinic, for example, reported that they received incomplete and hesitant guidance from clinicians on prognosis and anticipated changes to memory and function.¹⁹ Mixed emotional reactions by patients and caregivers are also common after dementia diagnosis.^23–29 Patients and caregivers may experience relief and validation from receiving a formal diagnosis that explains the cognitive changes, while many also experience distress, shock, denial, and sadness.^30,31 Data from audio-recorded disclosure encounters, however, reveal that clinicians infrequently use emotional rapport-building strategies during diagnostic disclosure conversations.^27,32

Integration of person-centered ‘serious illness communication’ skills into dementia diagnostic disclosure holds promise to improve communication quality, patient and caregiver experience, and initial care planning.^33–38 In the context of dementia diagnosis, “serious illness communication” includes a skillset for clinicians to share difficult news, respond to emotions, discuss prognosis, and engage in current and future care planning.³⁹ In fact, high quality communication is part of the Outcome Quality Measurement Set for the Neurology Accreditation Counsel for Graduate Medical Education.^40–42 A Modified Delphi Consensus Process on diagnostic disclosure endorsed the need for clinician training and identified best practices to include a structured, incremental approach.⁴³ Yet prior randomized studies of disclosure interventions were not effective at improving clinician behavior or patient and caregiver knowledge, coping, or distress.^44–46 One potential explanation is that the interventions did not incorporate skills training for clinicians to address factors that influence the experience of disclosure, such as attending to emotions.^44,46,47

In this qualitative study, we aimed to characterize the diagnostic disclosure communication experiences and needs of patients with dementia and caregivers using an evidence-based serious illness communication framework. These data will inform the next step of our research to codesign and test a structured diagnostic disclosure communication intervention in dementia care that integrates serious illness communication skills into routine practice. Qualitative methods are well-suited for capturing the nuanced perspectives and emotions that shape patient and caregiver experiences with dementia diagnostic disclosure, providing critical insights that will inform the design of a communication tool and clinician-facing intervention that are responsive to real-world needs and circumstances.^48,49

Methods:

Participant recruitment

Purposive convenience sampling was used to recruit patients and caregivers in the greater Boston area. First, we contacted patient and caregiver members of local dementia care advisory groups for the Dementia Care Collaborative (a holistic dementia care program at Massachusetts General Hospital) and the Massachusetts Alzheimer’s Disease Research Center (MADRC). Second, we posted study flyers in memory care and primary care settings and posted an announcement with study information on an online recruitment portal at Massachusetts General Hospital. Third, in partnership with community organizations in the MADRC Community Advisory Board, the research team attended, discussed, and shared study flyers at events in Boston communities that were focused on public education on dementia and expanding access to research opportunities. Participants who expressed interest were contacted by phone to complete an eligibility screening and to receive more study information. Interested participants provided verbal informed consent using the ‘teach to goal’ method,⁵⁰ completed a demographic survey, and scheduled a semi-structured interview. Patients were eligible if they were ≥ 18 years old, self-identified as having a diagnosis of dementia or cognitive impairment and spoke English or Spanish. The teach-to-goal method is an informed consent process that assesses decisional capacity by asking the prospective participant to answer questions about or explain the main study elements. After providing study information, the study team asked potential participants to respond ‘true, false, or I don’t know’ to questions about the study. Participants had to respond to all questions correctly to be included. Caregivers were eligible if they were ≥ 18 years old, provided care for an adult who currently has a dementia diagnosis or a loved one who died with dementia, and spoke English or Spanish. We screened a total of 63 individuals for the study; 28 (44%) were unable to be contacted; 12 (19%) were ineligible on screening; 23 (37%) were eligible. Of the 23 eligible individuals, n=21 (91%) patients and caregivers enrolled. The study was approved by the Mass General Brigham Institutional Review Board. All study materials were translated into Spanish by HCG, a member of the research team who is a native Spanish speaker.

Semi-structured interviews

The interview guide was developed based on an evidence-based conceptual framework for serious illness communication that included the following communication domains (Supplemental File): (1) fostering therapeutic relationships; (2) gathering information; (3) sharing information; (4) responding to emotions; (5) partnering in care planning and decisionmaking. Two members of the research team conducted interviews (JMP [female palliative care physician researcher], or HCG [female research coordinator]) using the semi-structured guide via phone or video conference (Zoom) with 6 patients and 15 caregivers. Of the 21 participants, one patient and one caregiver participated as a dyad and completed the interview together. The remaining participants were not dyads and completed interviews individually. Interviews occurred from January to June 2024 and lasted up to 60 minutes. Interviewer and participant pairing was based on language. HCG conducted interviews with Spanish speaking participants, and JMP conducted interviews with English speaking participants. Participants received a $50 gift card upon completion of the interview.

Data analysis

Audio recordings were transcribed and de-identified. We used thematic content analysis for this qualitative study.^51,52 Three study team members (JMP, HCG, JC, female internal medicine resident physician) reviewed an initial five transcripts and independently identified codes using the interview guide conceptual framework (deductive) and emerging data (inductive), which were then revised using consensus to develop an initial codebook. Each team member independently coded all transcripts. The team members met regularly to discuss and revise the codes and to resolve differences by consensus. The final codebook was used to code all transcripts. Coded data were then analyzed to identify thematic statements for the deductive domains as well as sub-themes, which were discussed during regularly held meetings until thematic saturation was achieved and no new themes were identified.⁵³ The themes were reviewed and refined through discussions with additional members of the research team. The varying professional and demographic backgrounds of the research team, which include clinicians and researchers in neurology, geriatrics, psychology, geriatric psychiatry, palliative care, and social science, enhanced the rigor of the analysis. A consolidated criteria for reporting qualitative studies (COREQ) checklist was used to ensure rigor of the methods. We addressed reflexivity throughout the study by regularly reflecting on our assumptions and potential influences on data collection and interpretation to enhance transparency and to minimize bias.

Results

Participant characteristics

A total of 21 individuals participated, including patients (n=6, mean age 77) and caregivers (n=15, mean age 60). Caregivers (n=13, 87%) and patients (n=4, 67%) were mostly female. Participants included individuals who identified as White (n=13, 61%), Black or African American (n=4, 19%), Latino/a (n=4, 19%), Asian (n=2, 10%), and other/prefer not to answer (n=2, 10%). Four participants (19%) identified as Spanish-speaking and participated in their preferred language. See Table 1 for additional demographic characteristics. The sample of patients and caregivers who participated in this study included 38% recruited from clinical settings at MGH, 33% recruited from advisory groups at MGH, and 29% recruited from local community events.

Table 1:

Participant Characteristics

	Total (N=21)	Patient (N=6)	Caregiver (N=15)
Age, years (std)	65(15.4)	77(12)	60(14)
Sex or Gender: Female	17 (81%)	4 (67%)	13 (87%)
Race
• Asian	2 (10%)	1 (17%)
• Black or African American	4 (19%)		4 (27%)
• White	13 (61%)	5 (83%)	9 (61%)
• Other	1 (5%)		1 (6%)
• Prefer not to answer	1 (5%)		1 (6%)
Ethnicity
• Hispanic, Latino/a/x	4 (19%)		4 (27%)
Language Preference
• Spanish   • English	4 (19%) 17 (81%)	-- 6 (100%)	4 (27%) 11 (73%)
Diagnosis
• Cognitive Impairment	7 (33%)	4 (67%)	2 (17%)
• Dementia	15 (67%)	2 (33%)	13 (75%)
Caregiver Relationship (caregiver specific to caregivers)
• Spouse or partner			5 (33%)
• Child			9 (60%)
• Relative			1 (7%)
Marital Status
• Single	7 (33%)	2 (33%)	5 (32%)
• Married	7 (33%)	3 (50%)	4 (27%)
• Divorced	1 (5%)		1 (7%)
• Widowed	5 (24%)	1 (17%)	4 (27%)
• Missing	1 (5%)		1 (7%)
Education
• Less than high school	1 (5%)		1
• Some college/Associate’s degree (< 16 years)	7 (33%)	3	4
• Completed 4 years of college (16 years)	7 (33%)	2	5
• Graduate/professional degree (> 16 years)	6 (29%)	1	5
Employment
• Employed full-time	4 (19%)		4 (27%)
• Employed part-time	4 (19%)		4 (27%)
• Keeping house/Home maker	2 (10%)		2 (13%)
• Retired	11 (52%)	6 (100%)	5 (33%)
Do you identify as a member of an Indigenous Community? Yes	1 (5%)	0	1 (7%)
Do you identify as living with a disability? Yes	5 (24%)	2 (33%)	3 (20%)
Have you experienced any difficulty accessing, or getting the healthcare you need? Yes	2 (10%)		2 (13%)
Have you experienced any difficulty affording the healthcare you need? Yes	3 (14%)	1 (17%)	2 (13%)
Sexual Orientation
• Gay/Lesbian	1 (5%)		1 (7%)
• Straight/Heterosexual	19 (90%)	6 (100%)	13 (87%)
• Prefer not to answer	1 (5%)		1 (7%)
Estimated number of years since the patient was diagnosed *
• <3	5 (24%)	1 (17%)	4 (27%)
• 4-6		1 (17%)	4 (27%)
• 7-10	4 (19%)	3 (50%)	1 (7%)
• >10	4 (19%)		4 (27%)
• Unsure/not formally diagnosed	3 (14%)	1 (17%)	2 (13%)

^*The quantitative data for this question was derived from the qualitative interview data (not survey), since we asked participants at the beginning of the interview about the timing of the start of symptoms and the timing of the diagnosis. Some have not received a formal dementia diagnosis but had received a diagnosis of mild cognitive impairment or just cognitive impairment/memory loss more generally.

Qualitative findings

Themes identified include:

(1) Perceptions of respectful or disrespectful communication affects the relationship with clinicians and contributes to positive or negative communication experiences, including before, during, and after disclosure of a dementia diagnosis; (2) sudden or unsupported disclosures resulted in a negative emotional impact, in which participants felt unprepared to receive the news or emotionally abandoned after diagnosis; (3) The absence of, or ambiguity around, a definitive dementia diagnosis contributes to patient and caregiver distress and to feeling dismissed by clinicians; (4) Mixed responses to illness education and clinician recommendations after disclosure reveals the need for a more personalized and comprehensive care planning process; (5) Patients and caregivers had mixed responses to prognostic communication and advance care planning discussions (in relation to disclosure) based on differing emotional readiness and information preferences. The themes are described below with representative quotes, with additional representative quotes in Table 3.

Table 3:

Diagnostic Disclosure Communication and Care Planning Framework Prototype

Domain	Sample Language	Rationale	Representative quotes
Building rapport and demonstrating respect	“I’d love to learn more about you, and the important people in your life.” “What are some things that you enjoy doing? “Who are the people that are most important in your life?” For patients: “I can see that you’re such a strong person.” For caregivers: “I can see that you’re such a strong advocate for […].”	Patients and caregivers appreciate communication that:  •Demonstrates respect for patients by addressing questions to them and including their perspective in the dialogue  •Asks open-ended questions to get to know personal details (what’s important, who is important)  •Acknowledges and honors both patient and caregiver strengths and experiences  •Respects patient autonomy and dignity by asking permission (see below) while also including caregivers	And the [PCP] immediately referred us to a neurologist…they still respected my [husband] and would address the questions to him, even if I was the one answering the questions. And I very much just watched that and appreciate the fact that they were still honoring him. 2, caregiver of husband That was eye-opening to me that a clinician would be so transparent and upfront with me to say, ‘we respect what you’re doing’ and ‘we don’t see this often, especially from a male caring for a mother.’ 8, caregiver of mother
Setting the stage by framing the discussion, and assessing illness understanding and information preferences	“I’d like to talk together today about the changes you’ve been experiencing in your memory or thinking. Would that be ok?” I’d like to start with your thoughts so I can share information that’s helpful to you. “What changes [or challenges] have you noticed with your memory or thinking?” “What do you think may be causing your memory or thinking changes?” Now I’d like to hear from your [family member or friend] about what they noticed. This is such an important part of understanding what’s happening. Is that ok? Caregiver: “Can you tell me about what you’ve been noticing?” “When learning about their medical conditions, some patients like to know all of the details. Others like to know the big picture, or they would prefer their loved ones to know details. What do you prefer? Follow up: Would you like to talk about this now? Or would like to wait until [insert name] can be here with you?	Setting the stage for diagnostic disclosure includes the following:  •Frame the conversation to orient patients and caregivers and establish purpose  •Ask patient permission to engage, fostering control and partnership  •Ask the patient and caregiver for their perspective on the symptoms to gauge readiness for a direct discussion (e.g. offer greater gentleness and emotional support when insight is limited and/or anxiety is high)  •Ask about information preferences to ensure patients receive the type and amount of information they want, avoiding harmful or unwanted details  • Normalize involvement of caregivers while affirming and protecting patient autonomy	[My husband] wanted to be very open about the diagnosis… He wanted to know and he wanted people to know this is what this disease is. It was empowerment for [my husband] in terms of like you wanted to take charge of disease as best you can. 2, caregiver of husband I didn’t know anything about Alzheimer’s, it was a big shock for me. So, we took [my mother] to the neurologist, and it was something so drastic, it was as if he was telling us that the next day my mom wouldn’t know who she was…it was very shocking, not having the knowledge or being prepared for something like this. 5, caregiver of mother I preferred it separately because I know how upsetting it could be to her because she didn’t think at the time anything was wrong. So by them mentioning these things in front of her, I noticed when they did before it would make her upset and I don’t like to see my mother upset, you know, so I prefer it to be one on one with me and the clinician because I could just see how my mother’s mood would change when they mentioned negative things. 11, caregiver of mother
Sharing diagnosis and responding to emotions	Given the test results that we’ve seen…. I‘m worried that you have a brain condition called ‘dementia’ [or “Alzheimer’s disease”] OR I’m worried that the changes you are experiencing with your memory or thinking are more serious than normal aging. [Is there a name for this kind of condition in your family or community?] Pause: Allow silence. “It sounds like this was not the news you were expecting.”OR “This is a difficult diagnosis to hear.” If the patient and caregiver can engage: “What are your biggest worries or concerns?” “I can see you’re really worried about…” “This is a lot of process. We will work through this together.”	When you share diagnosis, patients and caregivers appreciate information that is clear, direct, and compassionate, without a lot of medical jargon. Some examples include:  •Consider using “I’m worried” language to convey empathy  •Avoid ambiguous terms and use direct language like ‘dementia’ or ‘Alzheimer’s’ (when appropriate)  •Tailor language for limited insight, cultural stigma, or increased anxiety - ask permission to share with family, learn patient and family preferred terms, or use a gentler phrase (e.g. ‘more serious than normal aging’) for an incremental approach  •Pause and respond to emotions to give time for processing before moving to planning  •Acknowledge and validate feelings and express a sense of partnership so patients and caregivers feel cared for, supported, and not abandoned after diagnosis	But when we went in for him to review the results…he almost sounded like he was uncomfortable. He did do the genetic testing for the APOE. I thought that he just wasn’t very supportive. 4, caregiver of husband So it was a very fast conversation and she wasn’t caring about it or anything like that. It was just a very brief conversation. She didn’t really talk in depth about what could happen with the Alzheimer’s and dementia. And she just said… ’And maybe you should try some exercise, or these kinds of things’ and she didn’t say come back afterwards and maybe say we’ll check on you. 16, patient
Partnering in care planning	“After receiving a diagnosis of dementia, most patients and families want to talk about next steps in their care. Is it ok to start that discussion that now?” “I want to start by asking - what are your biggest hopes and priorities for the future?” “There’s a lot we can do together to support you and your family so that you can stay as independent as possible. We want to work with you both to develop a plan.” Let’s discuss: -Brain health (social engagement, risk factors, exercise and activity) -Medications (anti-amyloid therapy, if relevant; anti-cholinesterase inhibitors; other) -Resources (community and local resources) -Social supports (at home, caregiver needs) “What questions do you have?” This is a lot to process. “Let’s reconnect very soon to check in about how you are doing and to continue our discussion. We will do everything we can to support you through this.”	After hearing the news that this is likely dementia, patients and caregivers want a sense of hope and often have questions about what to do and what the diagnosis means. The following strategies can support patients and families after diagnosis:  •Offer hope and actionable next steps after sharing the diagnosis  •Provide holistic and comprehensive information on care planning to address the full range of patient and caregiver needs (beyond just medications for cognitive decline)  •Ask patients and caregivers about hopes and priorities to align care planning with personal priorities  •Recommend a clear follow-up plan and reaffirm commitment to build trust and partnership	They gave me pamphlets like who to call if you need some type of assistance for me, for the family…And then they said, well, we think she needs to go to some type of rehab… like a daycare because she was mostly home alone after my father passed. I put her in a daycare. She had a good time. She had friends that she met from high school. 11, caregiver of mother I think they should say it differently, for example, she has dementia, but you can do activities with her, exercises, take her outside… Even though I know she has dementia and it’s going to get worse, I want to live in the moment…I want to give her quality of life…she is a human being who feels and suffers. 5, caregiver of mother
Prognostic communication and anticipatory guidance	“Before we talk about what to expect in the future with dementia, I wonder if you’ve ever known someone with dementia. What was it like for them? What was it like for you?” Would you like me to share what to expect in the future? “Dementia is a slowly progressive condition that progresses over the course of years. There is no cure. While each person’s course is different, over time, you will likely experience more changes to your memory, behavior, and function.” Pause: Validate and respond to emotions Some patients prefer that I talk to their caregivers with more detailed information. Can I share more details about the diagnosis and what this means with (caregiver)?	Many individuals want information about what to expect with the dementia trajectory. However, patients and caregivers may have different levels of readiness to discuss prognosis and anticipatory guidance.  • Ask permission before discussing prognosis, as readiness and desire to hear this information varies.  •Explore personal experiences that shape beliefs, fears, and expectations about dementia  •Acknowledge uncertainty in the rate and pattern of progression while noting individual variability  •Provide a functional prognosis to help prepare for future changes in memory, behavior, and daily function  •Balance patient and caregiver needs—if the patient declines details or does not want prognostic information, ask permission to share with caregivers	I’m really glad that I was able to have that information because it did change my life in some way, mostly positive, and Doctor [name] was pretty honest when I asked him what can I expect….at least statistically how my progression would be. So that gave me the incentive to do a lot of the things that I probably wouldn’ have done if I didn’t know about it, like putting the financial, the estate planning, and also pay more attention to lifestyle changes, and that sort of things and then getting involved with advocacy. 19, patient Well, it was hard for me because I didn’t understand what the disease was. But they kind of broke it down to me in a way that made sense…But they took their time with the family and explaining what to look out for, what to expect, what I can do, where I can go for help…. 11, caregiver of mother
Preparing for the future	“While it’s so important to focus on the ‘here and now,’ it is also important that we talk about future planning.” “I want to start by asking: What gives you strength or support as you think about the future?“ We will check in periodically about important parts of your care, such as: -Supports and safety at home -Financial planning -Driving -Coping and overall well-being for you and your family -Advance care planning, including identifying a decision-maker if you can’t make decisions for yourself	Caregivers, in particular, have described a lack of preparation for changes and decisions that occur over the dementia trajectory. Here are steps to support planning:  • Introduce future care planning early to address safety, driving, advance care planning, and finances.  • Approach sensitively, recognizing these topics affect independence and identity  • Match timing to readiness—some may engage at diagnosis, others later.  • Normalize ongoing check-ins to make these discussions safer and more routine over time.  • Ask about sources of strength- invites patients and caregivers to bring faith, family, and other assets and coping strategies into the discussion	Then somebody says, “call the Alzheimer’s Association.” I’m like, “Well, I don’t even know the questions to ask…I think if somebody would have told us more just in broad terms, what to expect and how to even start addressing some of these things. Because it was just very daunting to be both providing care and trying to respect [my husband]’s dignity. But just to be able to start anticipating things, how do you find a group? As [my husband] I started to need help in the house -How do you find a caregiver?… if somebody could have let us know that there are driving evaluation programs. 2, caregiver of husband

Theme 1: Perceptions of respectful or disrespectful communication affects the relationship with clinicians and contributes to positive or negative communication experiences

Participants described examples of respectful communication by clinicians that contributed to the development of rapport and to positive experiences with diagnostic disclosure, including before, during and after communication about diagnosis. First, patients described the importance of clinicians conveying warmth and authentic connection to put them at ease, especially when dealing with the stress, anxiety, or shame that could be associated with the diagnostic assessment process, e.g., cognitive testing. Second, caregivers described psychological benefits when clinicians acknowledged their hard work and advocacy and asked how they were coping. Third, caregivers felt positively when clinicians demonstrated respect for the patient by including them in clinical conversations and by adapting communication to meet their unique needs.

When I first met [the neurologist]…I was referred to her. I was a little nervous…And she introduced herself…as we spoke, it was the way she would ask questions and share her concern…I felt immediate connection to her and felt very comfortable with her. 12, patient

So the psychiatrist…would say, ‘your daughter wants the world for you.’ So, he kind of was sticking up for me too which was really nice. I think any time there was a recognition of the effort and thought that I was putting in really helped me, really gave me a moment of light. Just my nervous system said, ‘ah,’ for a minute. 1, caregiver of mother

Patients and caregivers noted examples of disrespectful communication that contributed to dehumanizing experiences or feelings of marginalization during clinical interactions. Patients described examples of clinicians addressing their loved ones and ignoring them during clinical encounters. In other instances, caregivers felt as if clinicians were ‘writing off’ their loved ones as beyond help because of the dementia diagnosis or their age. These experiences mostly occurred during and after initial diagnostic disclosure. In some cases, caregivers noted that clinicians did not specifically offer support directly to them, such as by asking them about how they were coping with or adjusting to the needs of caregiving.

When they tell you- she suffers Alzheimer- it is as if they were telling you that if the person has Alzheimer’s, nothing can be done for them….For example, sometimes I say that we can give her some therapies, and they tell me that she is not going to follow instructions. I know that she is not going to follow instructions, but…there are things that can be done even if that person has Alzheimer’s disease. So, they put a label on them that says that nothing can be done if they have Alzheimer’s disease. That is a bit hard, and it is a lack of consideration and respect for the person. 5, caregiver of mother

No, I did not receive that level of support from the clinicians….And it would be so stressful at times, that I would, I almost had two breakdowns myself in providing care over such a long journey because I was becoming lost and so absorbed and I didn’t have a support system. 8, caregiver of mother

Theme 2: Participants described the emotional impact of sudden or unsupported disclosures, in which they felt unprepared to receive the news or emotionally abandoned after diagnosis

When looking back at their diagnostic disclosure experiences, patients and caregivers reported negative emotions as well as unmet emotional needs during and after communication about a dementia diagnosis by clinicians. A patient described an experience of ‘abandonment’ after the shock of the diagnosis, which was attributed to a short disclosure conversation and lack of a follow-up plan:

“We had a great rapport with [neurologist], but it was literally maybe a 5 to 10-minute conversation at best. And it was, “Here’s what all the test results say. Here’s what they show. I’m pretty sure you have younger-onset Alzheimer’s, here’s the medication I’m gonna start you on. I’ll see you in six months….” That was it. That was our diagnosis. So we walked out of there, stunned, not really realizing what hit us I retreated…hid under a rock. I withdrew from all the activities of all the things I enjoyed doing. 3, patient

In other instances, patients and caregivers described the diagnostic communication as blunt, sudden, or surprising. For some patients or caregivers, these experiences were related to the desire for more preparation for the news in advance and/or the need for clinicians to acknowledge or explore the fear, sadness, and loss associated with a receiving the news. In other instances, lack of general knowledge about dementia made the diagnosis feel more shocking.

“When I went in with my brother, they told us, ‘[My mother] suffers dementia.’ They don’t prepare you…No. Just that she’s going to have dementia, and you have to take care of her, and give her medicine and food… And it was kind of hard for us, because just imagine. She was a very active woman….and suddenly, she was forgetting everything…It was a very difficult change to go from being independent and taking care of herself and then, having to have everything done for her.” 10, caregiver of mother

Theme 3: The absence of, or ambiguity around, a definitive dementia diagnosis contributes to patient and caregiver distress and to feeling dismissed by clinicians

While some patients and caregivers reported clear diagnostic communication about dementia, especially in specialty memory care/dementia settings, others did not have an explicit, memorable, or sentinel disclosure conversation by a clinician. Instead, caregivers discovered the information through the patient’s medical record or through casual, off-handed disclosure by another clinician who was not the primary care provider or the memory care provider.

It’s on her chart… that it showed up first and then I went in and looked at it afterwards. But I don’t remember being directly told [the diagnosis] myself…I remember the conversation where I found out the health care proxy was invoked that conversation was on the phone with a doctor but I don’t remember being told in person about the Alzheimer’s, or on the phone. 18, caregiver of mother

Her primary care nurse practitioner was out one day. So, her sub was there …And she’s looking at my mother’s records and she says, oh yeah, she got some vascular dementia going on. No. I said to her, I’ve never heard anybody say that. She goes well, yeah, I’m looking at this MRI report and I can see, it’s talking about the white matter. 1, caregiver of mother

Other instances of uncertain diagnosis related to medical factors or perceived gaps in communication. Some patients described their symptoms as ‘mild cognitive impairment’ or ‘cognitive impairment,’ but have not yet been fully worked up for dementia. Other patients and caregivers described experiences of not feeling heard or taken seriously by clinicians when sharing the symptoms of changes to memory or thinking. For patients, they felt that clinicians initially dismissed their symptoms or attributed them to normal aging or anxiety, only to find out later that they had underlying pathology consistent with dementia. In other instances, caregivers perceived reluctance by primary care clinicians to call patients’ cognitive syndrome ‘dementia’.

With the primary doctor, we went when [husband] had his appointment and I told [PCP], he is worse and he told me no, that …it is because of his age, The primary doctor, he has never told me anything about what to expect…what he told me is that it is because of his age, many people when they are older that happens, he says. 9, caregiver of husband

My PCP would always say well, that is just aging. Now I know it’s not just normal aging, there’s some pathology underlying it. 19, patient (dyad)

Theme 4: Mixed responses to illness education and clinician recommendations after disclosure reveals the need for a more personalized and comprehensive care planning process

As part of diagnostic disclosure conversations, for both patients and caregivers who had a positive disclosure experience, receiving information about the diagnosis was coupled with attentive responses to questions and advice on care planning and coping with the illness. This communication enabled life changes that were described as helpful. In addition, caregivers appreciated and were comforted by the amount of time spent by clinicians in answering questions about the diagnosis to facilitate illness understanding. Patients also described appreciation for clinicians who repeated information without ‘judging them’ to help them understand, retain, and process diagnostic information.

“Well, it was hard for me because I didn’t understand what the disease was. But they kind of broke it down to me in a way that made sense…they took their time and explaining what to look out for, what to expect, what I can do, where I can go for help. the doctor is really excellent. So I understood them after they explained everything. 11, caregiver of mother

“The [PCP] and she’s wonderful and she tests you on certain things and then she takes you to her assistant who tests you even more thoroughly. And usually, there’s a follow up appointment and they go over if you’ve done worse on this or better on this….She tells you what she thinks and what’s happening and what you do going forward….And I also have seen a neurologist there….she does testing… It’s hard to describe but it’s almost where, you know that something’s wrong and somebody helps you to understand exactly what it is? I mean, it’s early on dementia… and everything was explained which helps greatly because, where I can’t remember as well as I used to, they, reiterate when I need to have more information. Not, ‘geez, she’s doing it again. 14, patient

Most patients and caregivers also reported that they received education and guidance from clinicians about strategies to slow cognitive decline, such as diet, exercise, social engagement, and medications such as donepezil. Some patients found this advice beneficial and empowering by giving them an opportunity to do something to care for themselves and to prompt advocacy which gave them a sense of purpose. Caregivers, similarly, reported benefits for their loved ones’ well-being after implementing recommendations, such as increasing social engagement.

Well, it was definitely a surprise….But I’m also glad, especially now, looking back, I’m really glad that I was able to have that information because it did change my life in some way, mostly positive… like paying more attention to lifestyle changes. 19, patient (dyad)

They would give me pamphlets like who to call if you need some type of assistance…for me, for the family….And then they also told me to sign a piece of paper for when….you have to make the decisions - the proxy. So that was just what the doctors were mostly saying. And then finally they said, well, we think she needs to go to…something like a daycare because she was mostly home alone after my father passed. I put her in a daycare. She had a good time. She had friends that she met from high school. 11, caregiver of mother

Other patients and caregivers, however, found the discussion immediately after disclosure dismissive or unsatisfactory (e.g. ‘that’s all we get’), especially when the discussion focused mostly on medications for memory loss or felt inadequate to meet the specific needs of the patient and caregiver. Some participants attributed this experience to the sadness associated with not having a cure for the disease, while others attributed it the lack of cultural or language adaptation of specific activities recommended (e.g. memory games) or to the lack of comprehensive planning and follow-up after diagnosis. For some caregivers, they were unable to identify specific clinician advice or support after diagnosis. Rather, they focused on the personal, familial, faith-based, or community assets that gave them strength and support to manage the illness.

And they basically just write a prescription, that’s it. I don’t know the medication that he takes, I know he’s on a medication right now for it. And he just gets a prescription and he gets the MRIs. And that’s all we get. #16, caregiver of father

They don’t give me any resources. I Google the information and then study more about the dementia. The clinician just give me some tips like, going to the beach, bring them. But then the memory games that I have to play again…My mom doesn’t speak English. So the memory card, the flash card, she doesn’t understand….My dad give up easily, but my mom keep going. But my dad, I don’t want to play the game. We’re just like kid. What am I? I’m 81 years old. Why you want me to play games? 20, caregiver of mother and father

[Clinicians] give them treatment and increase the dosage of the pill and so on. That’s what they do there…they change the medication, and that’s it. My relatives and friends help us through prayer. For example, we have my mom’s nieces and grandchildren. And when it’s time for any medicine, we come together to try to buy it for her. My brothers usually visit her and everything. 10, caregiver of mother

Theme 5: Patients and caregivers had mixed responses to prognostic communication and advance care planning discussions (in relation to disclosure) based on differing emotional readiness and information preferences

Many patients and caregivers reported that they did not receive information or anticipatory guidance from the clinician about prognosis at the time of, or after, the diagnostic disclosure. They sought information online, from the Alzheimer’s Association, support groups, or by reaching out to friends or family members. Caregivers, in particular, desired separate conversations and more information about what to expect in terms of physical changes, emotional changes, and resources and advice on how to find help in the home or other services. Some caregivers had to step in to share information with their loved ones about the likely trajectory of dementia, while others described the lack of preparation as contributing to a state of ‘panicking’ as they responded to changes without guidance. Caregivers also shared the ways in which they took it upon themselves to engage in anticipatory planning for future changes (‘taking the bull by the horn’) in their loved ones’ decision-making capacity, such as healthcare proxy forms or advanced directives.

We do not have a doctor that tells us what’s going to happen in the future with my dad. That is something that we had to find out ourselves. Mainly me and my mom talking to numerous people, trying to get the information as far as what’s going to happen to them later…There’s emotional things tied to Alzheimer’s….And we didn’t really have a clinician to tell us, “This is what’s going to happen emotionally. This is what’s going to happen physically in the different stages. 16, caregiver of father

It happened when actually I was helping to set my mother’s estate in place. And I wanted to get her opinion. This was before the major onsets of her diagnosis. I was proactive…What was her last will and her wishes for worst-case life situation. And she says, I don’t want this, I don’t want life sustaining medications. I says, okay, fine mom. I’m going to follow what you request. So that’s when the DNR was drawn up and also activated after that first or second syncope that she had. 8, caregiver of mother

I forced [clinicians] to put me on healthcare proxy, not only me. My sister….Because I don’t want to be wrong with my decision alone. My sister and I are very close….And I’m telling you that I’m forcing them to do healthcare proxy, because in our culture, we don’t do health care proxy. They believe…that means you wish them to die fast….I told [her] the proxy help me, and you and the doctor work well together to decide what we’re going to do to make you healthier, make you better. 20, caregiver of mother and father

For some patients and caregivers, the disclosure of the dementia diagnosis occurred along with prognostic communication to prepare them about the likelihood of continued decline in memory and function, which often occurred when the diagnosis was made at the more advanced stages. This included, for example, discussions about the potential of the need for nursing home placement or discussions of end-of-life preferences, which were perceived as inappropriate and distressing when they occurred too early in the diagnostic trajectory or too close to the time of diagnosis without an opportunity to process the news. Furthermore, caregivers described different informational needs than their loved ones (especially regarding prognosis), which caused concerns about creating emotional distress for the patient from the disclosure of this information when the patient may not have wanted that information. Lastly, some caregivers described complexity with the advance care planning related to cultural stigma.

When they ask me, do you want to intubate her, do you want to give her first aid, I find that they tell me like in a demanding way…mentally I don’t feel like I’m empowered to say, yes, intubate her, or don’t give her first aid, because I think that a decision that I would make at the time that happens….if that moment came, with a lot of love [I would want] them to tell me, look, your mother has to be intubated because she cannot eat or because she lacks oxygen, what decision are you going to make. I would want it to be at the right time, not before. 5, caregiver of mother

We did have one meeting with a neurologist. I remember sitting in the car with my mom and it was a sad moment because he did say, yeah, this could probably progress….And I probably would have been wiser to ask that question without my mom in the room, right? But it was sort of a sad realization for both of us…for me, I had to balance that. My need to know might not be my mother’s need to know. So, I’m not sure my mother really wanted to know anything. It was comforting and troubling at the same time. 1, caregiver of mother

We both is the healthcare proxy. Because I don’t want to be wrong with my decision alone….My sister and I are very close. And the decision we made, I always talk to her first. And…I’m forcing them to do healthcare proxy, because in our culture, we don’t do health care proxy. They believe that when you do the healthcare proxy, that mean you wish them to die fast….The proxy help me, and you and the doctor work well together to decide what we’re going to do to make you healthier, make you better. 20, caregiver of mother and father

For other patients and caregivers, they described a positive or neutral experience with receiving information about the likelihood of future decline, when coupled with advice on care planning. This enabled patients and caregivers to engage in practical, personal, and medical actions that helped with preparation, such as financial planning or completion of healthcare proxy. In some cases, it also prompted them to focus on advocacy, which provided a source of meaning.

The [neurologist] was pretty honest about what I can expect, at least statistically how my progression would be. So that gave me the incentive to do a lot of the things that I probably wouldn’ have done if I didn’t know about it, like putting the financial, the estate planning and then getting involved with advocacy so that gave me at least the feeling of I’m doing something. 19, patient (dyad)

Following thematic analysis, a subset of authors, including palliative care clinicians, serious illness communication experts, health equity researchers, and dementia care experts (JP, LRG, CD, CR, LD, EL) synthesized the findings into a communication framework prototype for diagnostic disclosure for future refinement through a co-design process. The framework draws from three main sources: (1) Patient and caregiver experiences in this study and additional qualitative studies on diagnostic disclosure;^{19,20,23,30,54} (2) best practices identified by clinicians in the literature through qualitative studies and consensus processes;^43,55–57 and (3) prior research on skills and strategies that enhance the quality and person-centeredness of serious illness communication, including sharing information about diagnosis and/or prognosis.^36,57–63 In Table 3, we include the communication domains, sample language that highlights a communication strategy or skill in practice, and representative quotes from this study that contributed to that domain. Specifically, participants’ experiences contributed to a framework that focuses on the importance of building rapport through respectful communication, asking about illness understanding and information preferences, sharing tailored and clear diagnostic information followed by responding to emotions, sharing prognostic communication in a way that aligns with patient and caregiver readiness, and engaging in comprehensive current and future care planning that meets the holistic needs of patients and caregivers.

Discussion:

Twenty-one patients and caregivers described both positive and negative communication experiences of receiving a diagnosis of dementia in clinical settings. Patient and caregiver experiences highlight communication challenges, including: feeling dismissed by clinicians when sharing cognitive symptoms, feeling emotionally abandoned after receiving the news, and inadequate information, planning, and follow-up. Respectful communication and authentic connection, attentive responses to questions to facilitate understanding, and tailored and empowering discussions of prognosis and care planning contributed to positive disclosure communication experiences. This research guides the development of clinical interventions to improve the quality and person-centeredness of diagnostic disclosure communication in dementia care (Figure 1).

Figure 1:

Framework for Diagnostic Disclosure Communication & Care Planning

Our findings affirm and add to the results of prior systematic reviews of dementia diagnostic disclosure^17,18 and qualitative studies of patients and caregivers in the United States and other countries (e.g. Canada, Taiwan, China).^{20,23,54,64–67} Some participants in this study perceived distressing communication breakdowns, such as clinician reluctance to name or pursue a formal dementia diagnosis or documentation of a dementia diagnosis in the electronic health record that had not been disclosed to the patient or caregiver. This sometimes resulted in an ‘abrupt’ disclosure by a covering provider without adequate preparation for patients and families. Disclosures lacking emotional support—such as blunt delivery or immediate shifts to medications or advance care planning—were perceived as lacking compassion. These findings highlight the need for psychologically supportive diagnostic disclosure communication, which involves delivering information in a way that is honest and compassionate, attends to the varying emotional needs of patients and caregivers, and fosters understanding and trust during a highly vulnerable moment.

Our study also highlights the importance of considering patient and caregiver individual needs and readiness^68,69 to discuss the diagnosis of dementia as well as the prognosis. First, individual information preferences play a role.⁷⁰ Asking patients and caregivers about what kind of information would be helpful at that time would enable clinicians to share information that aligns with preferences. Second, clinician use of active listening and validation of patient and caregiver emotions can be necessary steps toward readiness to discuss other issues, such as prognosis and care planning.^23,69 Third, assessing information needs and preferences is particularly complex in the setting of dementia because: 1) the conversation often occurs with a patient/caregiver dyad whose insights, understanding, and informational needs may differ; and 2) communication needs in dementia vary due to the impact of cognitive impairment. For example, a patient with early-stage frontotemporal dementia may have minimal or mild memory impairment but lack interest in information or demonstrate a lack of an emotional response. A patient with another form of dementia may feel upset by the news but forget quickly due to memory impairment. Implications of these findings to consider include the assessment of illness beliefs, understanding, and information preferences, tailoring the content and timing of disclosure using an incremental process to allow people to gradually absorb the news, and normalizing the involvement of caregivers as key partners in the discussions. Furthermore, instances of respectful or disrespectful communication affected the diagnosis experience. Interactions that conveyed patience, attentiveness, and acknowledgment of personal strengths created a sense of validation and support, while those that ignored the person with dementia or caregiver well-being felt dehumanizing. Respectful communication that builds trust and rapport is another crucial building block for engaging in sensitive conversations like diagnostic disclosure.^73–76

Our study also adds knowledge about tailoring patient and caregiver education and care planning after disclosure of a dementia diagnosis. Some caregivers and patients in this study appreciated clinician communication that provided detailed information at the time of diagnosis, which was perceived as empowering, such as: a) explanations of the diagnosis and what it means; b) receiving holistic recommendations about dementia management (e.g. social engagement, diet, exercise, medications); c) learning about local resources, groups, and additional supports for patients and families; and d) receiving information about prognosis, including the likely progression of symptoms and the importance of advance care planning. This is similar to other studies which demonstrate that caregivers desire anticipatory guidance but often feel that they do not receive such information from clinicians.^19,77 However, dementia education and care planning at the time of diagnosis should be tailored to the individual’s and family’s personal priorities and cultural needs to ensure information is relevant, manageable, and supportive in guiding next steps. For example, some patients and caregivers felt that discussions of advance care planning, prognosis, or preparation for future changes occurred too early and too soon, which felt akin to ‘writing off’ the patient.^78,79 One potential implication of this finding is the value of asking patients and caregivers about their preferences for prognostic information as well as their personal hopes, worries, and priorities as they process the news of a dementia diagnosis. This would enable the discussion and documentation of a personalized care plan after diagnosis driven by the personal priorities and needs.

Our study is novel in that it moved beyond exploration and thematic analysis to applied design, allowing us to develop a prototype communication tool with sample language and phrases grounded in the lived experiences of patients and caregivers. This work lays a critical foundation for the next phase of intervention development. Given the emotional complexity and relational demands of dementia disclosure, there is an urgent need for structured communication interventions that are tailored to the unique needs of this population. A robust evidence base supports core communication practices—such as assessing illness understanding and information preferences, delivering a clear diagnostic ‘headline,’ and pausing to respond to emotions—as essential to improving the experience of receiving difficult news. ^57,80–84 Our findings underscore the importance of integrating these evidence-based practices into routine dementia care, not only to improve communication quality but also to ensure patients and caregivers feel supported in coping with the diagnosis.^85–88 This presents a timely opportunity to develop and rigorously test a structured communication intervention specifically adapted for dementia care. Tools such as Conversation Guides^{62,83,89–93} can standardize critical elements of disclosure and equip clinicians with language tested by patients and caregivers, leading to higher clinician confidence and more compassionate, person-centered communication.^{34,35,94–96} Embedding clinician communication skills training- such as responding to emotions, asking open-ended questions, and non-abandonment—is essential for building trust, fostering authentic connection, and creating a sense of partnership at a highly vulnerable moment.^63,97

Our study has several strengths and limitations.

One strength is that the study design was informed by a conceptual framework of high-quality serious illness communication. This allowed us to explore specific experiences of clinician communication and to develop a prototype communication tool with sample language and phrases grounded in real experience. In addition, we included participants from different racial and ethnic backgrounds as well as individuals who speak Spanish, which broadens the range of lived experiences captured and improves the relevance of the findings across populations. Recruitment of patients from both clinical and community settings enables the examination of how clinician disclosure communication unfolds in different environments, which may enhance real-world applicability of the findings. However, we oversampled Massachusetts participants from our local system with access to dementia specialty care, which may affect the generalizability of the diagnosis experiences. In terms of additional limitations, our sample reflected more caregivers than patients, and given the small number of patients, we were unable to examine differences in experiences between patients and caregivers from the patient perspective. While the majority of individuals in this study reflected on experiences of a formal dementia diagnosis, some patients and caregivers were at different stages of a dementia diagnostic work-up and described experiences of communication about cognitive impairment or memory loss more generally. Furthermore, some patients and caregivers reflected on disclosure experiences that occurred years earlier, which may result in recall bias. Lastly, while a communication tool can provide a guiding framework for diagnostic disclosure conversations, a tool will not adequately address the systemic barriers to disclosure (such as clinician time constraints or discovery of the diagnosis in the patient’s chart). Communication tools also require contextual adaptation to align with the workflows and communication needs specific to different specialties and clinical settings.

Conclusion:

Our study generates further evidence and new knowledge about the need to redesign diagnostic disclosure communication and care planning processes for people affected by dementia. As an increasing number of individuals seek care for cognitive symptoms as well as more attention to screening for cognitive impairment, plus the rollout of novel disease-modifying therapies, the need for a structured, patient- and caregiver-centered approach to diagnostic disclosure is further elevated. Despite this being a desired approach, research is needed to co-design and test a person-centered disclosure communication intervention informed by expertise in serious illness communication and by the unique needs of patients with dementia, caregivers, and clinicians involved in sharing a diagnosis.

Table 2:

Themes and Sub-Themes with Additional Illustrative Quotes

Themes and Sub-Themes	Additional quotes
Theme 1: Respectful or disrespectful communication
Positive  • Warmth and authentic connection  • Actively including patients in conversations  • Acknowledge caregiver strengths Negative  •Ignoring or marginalizing patients  •‘Writing off’ the patient due to age or dementia  • Not asking about how caregivers are doing or coping	That was eye-opening to me that a clinician would be so transparent and upfront with me to say, ‘we respect what you’re doing’ and ‘we don’t see this often, especially from a male caring for a mother. 8, caregiver of mother …all the direction goes towards the caregiver, even to the point where they could be talking to them in the room as if I’m not even there. And I have had that happen once or twice, where it’s, “Well, [to my wife], what did you think? And I’m like, you know, “Hello. You know, I’m right here,” ….and I was completely befuddled, dumbfounded, and at the same -- felt very belittled. 3, patient
Theme 2: Blunt or abrupt diagnosis
Negative  • Lack of emotional support and follow-up  • Abrupt or blunt diagnosis without preparation  • Shock of the diagnosis due to lack of knowledge about dementia	“My thought was maybe, well, maybe he’s being blunt because …he thinks he’s doing her a favor. And then…he gave [my mother] a lot of other quizzing about events that happened in the recent past… and he said, ‘I looked at it and I see that your hippocampus is shrunk and it’s Alzheimer’s. You have Alzheimer’s.’ …I think I looked kind of horrified. I think my mother looked agitated. 1, caregiver of mother He seemed focused more on the deficits…. if he had sort of eased us into it more. I was bound to feel bad anyway…So, it was a bit of a shock, kind of a punch in the stomach that it was, when he said, “Well, this is probably Alzheimer’s ”…and he didn’t really offer any follow-up, like, let’s meet again in a couple of weeks to see how you’re doing with this. 4, caregiver of husband
Theme 3: Absence of or ambiguity around diagnosis
Negative  • Clinician dismissal of symptoms  • Clinician reluctance to diagnose ‘dementia’  • Diagnosis by covering provider or in the hospital  • Diagnosis discovery in the chart	I said to the doctor I’m having trouble and he said, I’m telling you, you don’ have trouble, the people that have trouble come in here with their family who says they have trouble…. he said we’ll watch it and the next year he said, okay, so we started doing tests… And we decided that I would see the neurologist. 14, patient A neurologist…identified cognitive loss, but there was still not a formal dementia diagnosis. And just over time, he got worse to the point where his wife really couldn’t take care of him, and I was afraid he was going to die from a fall. And so, I came and took him, again, with her permission. And he was happy to come with me …I was the one that was saying, it’s dementia….And then eventually, he was diagnosed when he was admitted to the hospital for his UTI. 15, caregiver offormer partner
Theme 4: Mixed responses to illness education and care planning
Positive  • Comprehensive guidance about the illness, what to expect, and where to go for support  • Sense of empowerment from receiving recommendations about cognitive function (e.g. social engagement, lifestyle, medications) Negative  • Focus mostly on medications and imaging  • Lack of education and information from clinicians and relying on personal, familial, faith-based, or community assets to manage  • Lack of cultural or language adaptation of recommendations	“I think I’ve only had positive experiences. If I have any question, it’s always answered and they always advise on what to do in certain conditions. it’s a neurologist and a speech therapist. 6, caregiver of grandmother My mom was on Seroquel and sometimes she would use Lorazepam for anxiety. And he did recommend that those are two drugs that she probably should stay away from. So, that was useful professional advice. But there was no follow up from that…We did see one more neurologist… that sucked because… I’m looking for some sort of answer that it seemed like nobody’s really going to give me whatever that answer is. And again, I just wonder if it has something to do with, there’s no great medicine. 1, caregiver of mother I felt as though the clinicians -- when you see the energy that they’re giving off and their puzzlement of what you’re dealing with, it seems like they take a step back because they don’t want to admit, they don’t know the answer to what your situation is. And then you have to take the bull by the horn yourself and says, “Well, I’m going to have to take this journey on by myself the best I can and with help and prayer and God’s guidance make the best decisions on my own.” 8, caregiver of mother
Theme 5: Mixed responses to prognostic communication and future planning
Positive:  • Patients who want to know prognostic information found it helpful and empowering  • Prior knowledge of dementia makes information less shocking  • Pairing prognostic information with advice about where to go for help Negative  • Prognostic information or advance care planning occurred too soon near diagnosis  • Caregivers asking about prognosis in front of patients which caused patient distress (and not knowing if the patient wanted that information)	I think [neurologist/speech therapist] have made it clear that the cognitive will continue to decline. But they also give us advice on how to deal with that and making sure my grandmother stays active, physically active….Prior to that, I knew about dementia and how it cannot be cured. I knew that. So it was not such shocking news. 6, caregiver of grandmother I would have preferred or we would have loved to have him also add, this doesn’t mean your life ends today or tomorrow. You know, dementia is a journey like any other terminal disease or diagnosis. But it doesn’t mean your life has to end tomorrow. Nobody knows how long the progression is gonna take. …And we kinda learned that the hard way ourselves, because again, speaking with a different doctor [who] had told my wife aside from me, that I’d be in a nursing home within three to five years. So we not knowing any better, we took him to heart in the house that we were living in at the time we sold it, because we said there’s no way we could afford to live here. 3, patient

Data availability statement:

All data relevant to this study are included in the article or uploaded as supplemental information.