Caring for People With Dementia: Mapping the Experience and Journey From Diagnosis

Abstract

Background and Objectives

Family care partners of people with dementia are not typically the focus of health care and aged care providers. They experience unmet needs, missed opportunities for support, and barriers to wellbeing that impact the dyad. This longitudinal study aimed to understand the experience of care partners, mapping their journey as they navigate health care and aged care systems as well as other supports.

Research Design and Methods

Fifteen family care partners participated in this longitudinal, qualitative study. For 6 months they recorded details (provider, date, purpose, outcome, and satisfaction rating) of interactions with health and aged care services. Monthly semistructured interviews reviewed experiences, prompted by logbooks. Thematic analysis identified factors that influenced care partners’ experiences and mapped the typical journey.

Results

Data indicated that participants’ needs fluctuated, with 3 key time points of heightened need: dementia diagnosis, in-home care, and transition into residential care. Thematic analysis identified 3 corresponding themes of carer need and risk: “psychological support/distress,” “social connection/social isolation,” and “knowledge/disempowerment.”

Discussion and Implications

Findings suggest a critical role of time in dementia care journeys, impacting the support that care partners need from health care and aged care systems. The potentially foreseeable, time-based nature of unmet needs suggests that education and training of practitioners can highlight the needs of carers for knowledge, support, and connection, and the importance of prioritizing them differentially according to the stages of the carer journey.

We are living longer, but with this has come an increased prevalence of conditions which are more common with aging, such as dementia. Currently, over 55 million people worldwide live with dementia, and this number is set to increase to 139 million by 2050 (World Health Organization, 2023). Although people with dementia experience an individual journey, dementia is generally progressive, beginning with mild cognitive impairment and eventually requiring high-level support and physical care in advanced stages (Cohen et al., 2024). Needs for physical and psychological support from a family or friend care partner often start early in dementia and increase as the disease progresses (Prince et al., 2013).

Caring for a person with dementia is complex, requiring a detailed understanding of their needs and navigation of health systems and services. There have been many efforts to develop support interventions for care partners, but the effectiveness of these interventions depends on the stage of the dementia journey (Cheng et al., 2019), and systemic shortcomings remain in formal supports offered by health care systems and services (Livingston et al., 2017; Ng et al., 2021). A better understanding of how the carer experience develops and changes over time is essential if we are to provide more effective support for people with dementia and care partners (Gallagher-Thompson et al., 2020). To identify gaps in support and opportunities for improvement, we conducted a longitudinal, qualitative study of the experiences of care partners and mapped their care journey over time.

A Need for Continuing Care Post-Diagnosis

At both the primary and specialist care levels, people with dementia and care partners frequently report experiencing little structured support, with key areas for development including coordinated input from health care providers, continuing care postdiagnosis, and advanced care planning, with a focus on the dyad (Livingston et al., 2017; Stamou et al., 2021). Supports may involve planning for contingencies and future needs, psychological resources such as counseling and relationship/peer support, guidance managing dementia symptoms, and practical support including care coordination, transition management, and financial, risk management, and advocacy information (Bamford et al., 2021). However, studies commonly identify a mismatch between the support provided and the actual needs of people with dementia, care partners, and families (Frost et al., 2021; Mansfield et al., 2022; McAiney et al., 2020; van Wijngaarden et al., 2018; Wheatley et al., 2021).

Unmet Needs of Care Partners

While caring for a loved one with dementia can be very rewarding, care partners are at risk of depression, anxiety, poor physical health, and higher mortality (Ory et al., 1999; Schulz & Beach, 1999). Family and friend care partners are usually unpaid, and many juggle caring responsibilities with work and other family commitments. Caring is a highly individual experience, depending on care needs, personal characteristics, cultural background, and external and internal resources available to the dyad, including social, financial, and human capital, and the resources and culture of health care systems (Gallagher-Thompson et al., 2020). Gallagher-Thompson et al. proposed 3 stages in care partner needs: early (e.g., information seeking, care planning), middle (e.g., increased responsibility for decision making), and late (e.g., anticipatory grief, adjustment to life after caregiving), and recommended longitudinal research on the “pivotal transition points” between stages to determine which interventions are most appropriate at each stage (Gallagher-Thompson et al., 2020, p. S35).

CoDesigning This Research Project

In July 2021, we conducted a workshop in Sydney, Australia, attended by stakeholders including people with lived experience of caring, multidisciplinary researchers, and health care professionals. The agenda was for three different research teams to pitch an education or support intervention, and for stakeholders to select one project for implementation. Instead, it became clear that the lived experience experts did not believe educational and psychosocial interventions would meet needs. They did not want the onus of improvement to be placed on them, instead asking how health care and aged care providers could change to provide better support. As one participant stated, “If one more person tells me how to be more resilient, I’ll scream!.” In response, researchers, clinicians, and consumers collaborated to develop the current project, taking seriously the call to place the onus of improvement on the systems that people encounter during their caring experience.

The Current Study

We aimed to understand the experience of care partners as they navigated the health care and aged care systems in Sydney, Australia. Focusing on their caring journey and needs over time, we examined interactions that were beneficial and when there were missed opportunities that might inform system improvement.

Method

This longitudinal, qualitative study was approved by the Western Sydney University Human Research Ethics Committee [approval: 14858]. Qualitative descriptive methodology was used, as is appropriate for exploratory health care research aiming to understand firsthand experiences (Neergaard et al., 2009; Sandelowski, 2000; Stanley, 2014). We created journey or experience maps from the qualitative data to describe the caring journey and needs over time (Joseph et al., 2020; Kalbach, 2016). See Supplementary Details, S1 for COREQ-32 (Tong et al., 2007).

Participants

Participants were 15 care partners (13 female; 2 male; Mean age = 67.4 years) for 17 people with a dementia diagnosis (16 in community, 1 in residential care, Mean age = 80.83 years). Care partners were an English-speaking purposive sample approached and recruited by email and phone via networks, including the Step Up for Dementia database (Jeon et al., 2021). Care partners had diverse and evolving caring responsibilities. One person with dementia transitioned into respite and then residential care during the data collection period; another was bedridden and receiving palliative care at home. Two care partners cared for multiple people with dementia, for example, two parents. Most care partners cared for their spouse; the remainder cared for parent/s (62.5% partner, 37.5% parent). Diagnoses of dementia had occurred between 2016 and 2022, most commonly with Alzheimer’s Dementia (44.4%; see Supplementary Materials, S2). Most care partners lived full-time with the person with dementia (87%); one care partner spent most of the year overseas and engaged in the initial and final interviews only; two care partners lived half the week at their own home and half with their parent with dementia who would be otherwise living alone. No participants withdrew from the study over the 6 month data collection period.

Procedure

Carer logbooks

Care partners kept a logbook in real-time of their encounters with health professionals and service organizations. Information recorded included type of service, date/time, and duration of visit, reason for and outcome of visit, and how satisfied they were with the visit from 0 to 10 (0 = highly dissatisfied, 10 = highly satisfied), and why (short-answer response). Logbooks were not submitted, but records were used as memory prompts during interviews.

Carer interviews

We conducted seven interviews with each individual care partner participant between July 2022 to March 2023, via Zoom teleconference. These were one initial interview (60–90 min), five monthly interviews (30–60 min), and one final interview (60–90 min) with each participant. Participants received an AUD $50 gift card following each interview. All core interview questions were open-ended and phrased conversationally, following and elaborating on participants’ responses (see Supplementary Materials, S3 for interview questions).

Author R. B. (registered psychologist) conducted all initial and final interviews, and most monthly interviews, and was employed as a research fellow with clinical training and experience conducting interviews with vulnerable populations. Author M. C. assisted with conducting monthly interviews and was employed as a research fellow. Participants were made aware of the interviewers’ professional backgrounds and research interests. Both female interviewers did not have a prior relationship with participants.

Initial interviews.

Initial interviews focused on carers’ experiences to date, including receiving the dementia diagnosis. Participants reported demographics, time since diagnosis, and access to support and education regarding dementia and wellbeing. Example questions included “Who gave the dementia diagnosis?” and “Were you given any information or linked to any services at diagnosis?.”

Monthly interviews.

Monthly interviews included general review questions: “How has this month been?,” “Have you come across anything new that is helpful for you as a carer?.” The interview included specific questions about carers’ logbook entries for that month, for example, “Do you think the experience could have been improved? If so, how?.”

Final interviews.

Final interviews included reflections on carers’ experiences over the research period, what had been helpful and unhelpful, barriers to accessing support, and recommendations for improvement.

Analysis

All researchers involved in the data coding and analysis were female identifying and had training and experience in qualitative research and analysis. The lived experience of the primary interviewer RB motivated her research interests and may have created bias through identification with interviewees. However, this was mitigated by her clinical training and experience, and final analysis occurring through group consensus. Other authors had a range of experiences and diverse disciplinary and methodological backgrounds across health services research (M. D., D. N., R. L.-S.), cognitive psychology (C. H., O. M., M. C.), carer advocacy (L. H.), and clinical practice (R. B. and N. M.).

The interviews were audio and video recorded and transcribed using Otter.ai software with manual checking. Identifying information was removed. All transcripts were imported into NVivo 13 (Lumivero, 2020) to assist with data management and coding. The analysis involved six steps: (a) becoming familiar with the data; (b) generating initial, descriptive codes, and mapping these to timepoints; (c) combining and interpreting codes to identify themes; (d) reviewing and refining themes; (e) naming final themes and defining their nature over time; and (f) producing the report. For steps 1 and 2, transcripts were coded by authors N. M, O. M, and R. B using thematic analysis (Clarke & Braun, 2017) and codes were grouped according to the timepoint/s that they had experienced in the caregiving journey. Themes were not identified in advance but were derived from the data. Following the initial coding of all transcripts, authors C. H., R. L.-S., R. B, O. M, and N. M grouped codes into theme clusters that described the needs and risks experienced by carers (step 3). These themes were reviewed and finalized via group consensus at workshops attended by coauthors where they were mapped to a timeline, beginning at diagnosis (steps 4–6). Early findings were presented at two aging and gerontology conferences in 2023, and experts were invited to provide feedback. Participants did not provide feedback on the data.

Results

First, we describe the needs and risks that emerged from the data (primary themes), and second, we describe how these needs and risks fluctuated over time (journey map). Third, we specifically discuss examples of how these needs and risks manifested in aged care and health care settings to identify opportunities for improvement. Finally, we present the barriers that we identified that increase the risk of unmet needs, and solutions identified by carers.

Needs and Risks for Care Partners on the Dementia Journey

Carers’ experiences of aged care and health services from diagnosis were influenced by their own needs over time. Carer needs could be classified into three themes: the need for knowledge; the need for psychological support; and the need for social connection (see Supplementary Materials, S4). Needs varied across the carer journey from the point of diagnosis. We found each of these primary themes had a dichotomy where a need that was not met presented a corresponding risk to wellbeing. Themes about the need for knowledge related to the risk of disempowerment when knowledge was not available (‘I want to see the pathway... it’s frightening. We’re isolated... we don’t know what to expect’). Themes about the need for psychological support related to the risk of increased distress when support was not available (“I have to find... time for my own mental health. … I thought, I can’t do this, I can’t do everything, and... I was just overwhelmed. Just desperate, desperate.”). Themes about the need for social connection related to the risk of isolation if the connection was not available (“It feels a bit... lonely. Kind of like I’m doing this on my [own].”)

These three needs/risks did not operate independently of each other; rather, analysis suggested an interaction between them. For example, when psychological needs were met, care partners were more likely to attend support groups, reducing the risk of social isolation, as well as linking them to knowledge about services shared informally by peers, which decreased psychological distress (see Figure 1).

Figure 1.

The interactive relationship between need/risk categories.

Temporal aspects of carer needs

Analyzing monthly interviews emphazised how needs for knowledge, support, and connection fluctuated over time. There were key time points when needs were more intense: immediately following a dementia diagnosis; experiencing the need for care services to come into the home; and prior to and during the transition into residential care (see Supplementary Materials, S5).

Journey mapping afforded the opportunity to make visible our longitudinal data, demonstrating the fluctuating needs of care partners over time (see Figure 2). At the point of diagnosis, care partners reported an intense need for knowledge. The crisis point at diagnosis, especially if it was given early, was often followed by a “lull” in service contact (“At this point in time, we do not need to draw on a lot of resources that are external to us”). Carer need was heightened again when trying to access formal care services in the home (including palliative care), and again when transitioning to full-time residential care.

Figure 2.

Timeline of carer needs including: (A) fluctuating carer needs over time, and (B) concurrent cumulative needs over time. * 3 key time points of heightened carer need.

This visual representation of the journey provides a backdrop for considering how needs intersect with the complexities of the aged care and health care systems. In contrast to having their need for knowledge met at the point of diagnosis, care partners frequently reported that they were not provided with disease-specific information or links to services.

P8, Female. When the diagnosis came... the [neurologist] said, ‘you know you have Alzheimer’s’ and there were no pamphlets, no booklet. nothing to say this is where I’d suggest you go... for help. Nothing.

At all points on the journey, care partners often encountered important service information by chance, through internet searches (“I just chanced on it when I was googling”) or talking with others (“I only found this out by accident from this woman”). The absence of knowledge at key times contributed to feelings of isolation and abandonment (“that feeling of being abandoned comes back to me, and it’s awful”), and at times there were inconsistencies in information provided.

P7, Female. I’ve been surprised about getting contradictory information from different sources and having to sort of work out exactly what’s going on.

The longitudinal nature of our study enabled care partners to express not just the need for knowledge and support, but specific needs at specific points in their journey.

The cumulative aspect of carer needs

Care partners reported a cumulative rise in needs due to the constancy of their role (“It’s constant. My phone is on 24 hours”). As the needs of people with dementia increase, so do demands on carers’ time, energy, and resources.

P8, Female. Brutal and awful, every day, struggles with that loss of function... it’s that kind of relentlessness... that’s just wearing as a carer … It’s really exhausting... you reach a tipping point, and it appears like it’s happened overnight, but it’s not.

The Intersection of Carer Needs With Complexity of Aged Care Systems

The heightened times of need were further intensified by complexity of aged care systems and difficulty accessing services.

P10, Female. My mother had died. And I’m trying to organise aged care for my husband. I didn’t need it... it was keeping me awake at night.

The primary reason for low satisfaction ratings in logbooks mostly related to systemic challenges: difficulty using government-based systems to access resources (e.g., system too complex to navigate); and organizational challenges, such as governance of funding packages. Care partners reiterated that bureaucracy was frustrating, and the waiting times for and difficulties in accessing their funding made the care journey extremely challenging (“We don’t need this added pressure … Why do we have [all this] bureaucracy?”). Care partners had to wait very long periods for assessment and approval for basic assistive equipment, increasing the risks of harm to the dyad.

P9, Female. Exactly two months ago today, [the case manager] said to me, ‘I’ve put your request forward’ that ‘you’ll hear from the OT’. I’ve heard nothing, zero...

Care partners also experienced local challenges when supporting the person with dementia (e.g., when attending the local government offices to apply for government-funded carers’ allowance; or experiencing a high turnover of personal care staff).

P7, Female. I tried online, and it wouldn’t work... I’m not that good online... I went into [physical office] and waited and waited. And then they said, ‘Oh, yes, we’ll get you a copy of that’. Well, they [didn’t].

Gaps and deficiencies in service provision contributed to carer distress, compounding carer burden (“The whole experience of caring … is very frustrating. The system just doesn’t work well.”). Care partners expressed the need for a standardized system (“A streamlined process would be helpful”), with appropriately timed delivery of necessary information to guide their caregiving journey. This expressed need was in contrast their lived experiences, in which carers described a fragmented system that was difficult to navigate, especially for those with diverse backgrounds and/or limited computer literacy.

P10, Female. I’m finding it difficult and... I have a master’s degree and I worked for government departments and filled in a lot of forms. And it’s still tricky for me. So, somebody for whom English is a second language, or somebody who doesn’t have family, I don’t know what happens. It shouldn’t be like that.

The Intersection of Carer Needs With Health Services

The typical journey of care partners with health services involved receiving a diagnosis of dementia from a specialist (neurologist or geriatrician) followed by periodic general practitioner (GP; local doctor) visits as needed, and infrequent specialist visits. An exception to this journey was noted at one local hospital, where postdiagnostic support involved routine referral to a Dementia Care Advisor (psychologist), who maintained connection. People with dementia who had comorbidities such as diabetes attended routine appointments at outpatient clinics and received treatment from allied health professionals. Interactions with key services are summarized later, with reference to our primary themes (needs and risks), and reported in detail in Supplementary Materials S6.

General practitioners

The most frequent interaction with health services that occurred over the 6 months of the study was with participants’ local doctor or GP. Overall, high satisfaction ratings were given for health professionals with whom the person with dementia had a long-term relationship.

P9, Female. I had a GP appointment for dad... he was super helpful [and] engaged with dad [who’s] been seeing him for a few years now. He really listened [and] gave some ideas about what we could do.

However, GPs varied in their capacity to meet needs. The expectation of care partners was for GPs to hold a “co-ordination” role in postdiagnostic care, providing disease-specific information, advice on managing the changing abilities of the person with dementia, and linking care partners to appropriate services. For many carers, however, the GP was unable to fulfill this role. Care partners cited reasons for this “gap” in services, such as GPs’ limited dementia knowledge (“I don’t think the carer’s role is understood [by GPs] terribly well”), perceived busyness of GPs, and/or limited finances to pay for an extended consultation.

P1, Female. Every time I see our GP [he is] lovely. I would always give him an eight or nine [out of 10] just for warmth. However, for knowledge and support, I’d give him a five because he doesn’t know much about dementia … So, he had no idea what I’m doing for [my husband].

P5, Female. [The GP is] very busy … they’ve just got too much on the plates... you can only talk for 15-minutes about one thing.

Specialists and hospitals

Experiences of specialists’ appointments were often negative or disappointing. This was especially the case when initial diagnosis was not accompanied with referrals to dementia specific support services.

P11, Female. The Geriatrician let us know he had Alzheimer’s disease... and he said, ‘I’ll see you in 6-months’ time’. And so, you are kind of left at that point. A diagnosis and absolutely no idea what to do.

When intersecting with the health system, care partners felt their own needs were overlooked (“I’d love for [the GP] to tell me to look after myself. He doesn’t”), as they were not viewed as the patient or service user (“They see [person with dementia] as a patient but not the whole family”). It was very meaningful for care partners when health professionals made small efforts to acknowledge their contribution and needs.

P10, Female. [The Geriatrician] had a little chat to make sure I had information for care partners...he patted me on the shoulder and said, ‘You take care.’ It brings tears to your eyes [teary]. [That] made me feel a lot better.

Environments and systems within health settings were not always dementia friendly. For example, the absence of dementia friendly signage in hospitals, and long waits in crowded waiting rooms became distressing.

P9, Female. I do struggle with... Dad’s appointments.... the way clinics work in hospitals … there’s all these signs up around the hospital, saying, ‘We don’t tolerate aggressive behavior’... But when you’re dealing with somebody with dementia, who’s been waiting for two hours for an appointment... it can be quite challenging.

When care partners made a helpful connection with health professionals that could assist the family (e.g., dementia specialist consultants), this often occurred at a point of crisis such as a hospital admission. Although the family experienced relief that they were given relevant services and information, they also expressed confusion and regret about the late provision of services.

P3, Female. None of the doctors that ever suggested that [person with dementia] needed anything or... he should get these services … So, when we finally got it, all hooked up, he came straight in as level four [highest care level].

A minority of care partners reported the positive experience of receiving a referral to a Dementia Care Advisor/psychologist at diagnosis, who remained a contact point throughout the dementia journey. This service was specific to one local hospital, and several participants residing within its catchment area benefited. Care partners described gratitude for the resources provided at the start of the dementia journey (a face-to-face meeting), and on an ongoing basis (at key points of need) through email dissemination and invitations to events and support groups. This provides a promising and successful model which could be implemented more widely.

Barriers to Service Access and Use

Cultural and language background

Cultural and language background broadly emerged as a barrier to accessing services for some participants. Care partners mentioned the importance of congruency between paid caregivers’ cultural and linguistic diverse (CALD) backgrounds and that of the person with dementia because matching provided valuable support and social engagement for people with dementia (See Supplementary Materials, S7). Some participants had success in sourcing such assistance:

P13, Female. She often speaks to me in Russian, and I just remind her ‘Mum... I don’t speak Russian’, because she’s so used to conversing all day speak with her [paid carer]... it is really wonderful.

However, language specific services were not consistently available. Care partners reported scarcity of CALD resources tailored to both care partners and people with dementia, contributing to feelings of disempowerment, negative attitudes towards dementia, and a lack of dementia literacy. Not every provider was culturally sensitive, and when consumers’ concerns were raised regarding need for specific resources, providers failed to deliver.

P1, Female. [The provider] said, ‘But I assumed because your father is a male, you would want a male’. And this is where this cultural clash happens all the time... Don’t assume!

P2, Female. When you give them feedback... [e.g.] the literature that you put out being put in different languages or having a social worker [that’s] Greek speaking... [The provider says], ‘Yeah, that’s a great idea. We’ll bring it up.’ And nothing ever comes of it.

Participants from particular cultural groups consistently expressed the impact of community attitudes such as gendered expectations around caregiving and cultural stigma stemming from poor dementia awareness. Such negative perspectives posed a significant barrier to help-seeking behaviors, culminating in later presentation to healthcare services, delayed diagnosis, and poorer postdiagnostic outcomes.

P1, Female. The stigma to this disease is huge... Okay, let’s start with the word. The translation of dementia in Arabic is “crazy man”. Who is going to label their partner or their loved one “crazy”?

Financial and social capital matters: “The service should be the same everywhere”

Inequity in participants' social and financial capital influenced experiences. Adult children in our sample expressed concern for people navigating services without the assistance of a support person who was familiar with technology (“If you don’t have an advocate, and you’re an aged person …It’s very difficult”), because the levels of computer literacy required to access resources was far beyond their parents, both with and without dementia.

P15, Female. There’s plenty of support, I just think you have to also know where to get it. … I’ve just found it all online, but I’m thinking for someone who’s not computer savvy, where do they go?

Findings highlighted inequities in services due to financial resources and even postcode. One carer became acutely aware of the inequity of their service experience when they accessed a hospital in a more affluent geographical area of Sydney. Inequities in service availability also became particularly evident with the transition to residential care.

P2, Male. We left [emergency] with... pressure stockings... a battery of tests [and] we left there knowing when to go back and see them, what the next step was. I was like, in shock. I thought, ‘Why is it the people of [local area] get this kind of service and we at [local area] don’t even get half?’... That made me happy but at the same time, it made me quite disappointed... because the service should be the same everywhere...

P6, Female. She [residential aged care provider] said, ‘Oh, are you aware we require a $700,000 bond?’ And I said,... ‘my husband has a pension’... She said, ‘Oh, that’s cheap. Most places now are asking for a million dollars …

Carer-Generated Solutions

We invited care partners to reflect on ways that systems and services could be changed to better meet needs for both care partners and people with dementia. The depth and detail of the resulting carer-generated solutions have wide ranging implications for Australian aged care systems and culturally-appropriate and dementia-friendly healthcare. Carers envisioned services that were streamlined and centralized, and supports that fostered social connections, including connections to broader community organizations and friendships, with access to resources focused on the needs of both care partners and people with dementia. For example, it was suggested that a dementia advocate (navigator/case manager) could help care partners navigate the system while simultaneously monitoring wellbeing.

P10, Female. The challenges of all the paperwork I’ve got to do to get [loved one] into aged care is... really making me quite stressed, there’s a lot of it, there’s a lot of stuff I’ve got [to] find. And I can understand that... But there’s, there’s actually nobody to help and it’s so complicated. There is actually a real need... for advocates to work with people who are trying to get people into aged care.

Some had previously experienced the value of an advisor or dementia advocate to help navigate the systems encountered on the care journey.

P2, Male. I miss the people that just used to ring up to find out ‘Hey, how you going?’... ‘Is there anything I can do for you?... that’s what’s missing...

P6, Female. They actually call... They tell you the steps and it wasn’t through email … it’s someone calling you telling you what is happening.

The potential benefit of regular support for carers was reflected in the value that some care partners placed on their monthly interviews with researchers, whereby the interview process itself became therapeutic.

P6, Female. I’m quite enjoying these sessions... just to talk to you about it.

P1, Female. Thank you so much... I just feel like I just had a counselling session... I feel good.

These comments reiterate the minimal time and resource intervention that can have a meaningful impact on carers’ wellbeing. This model of psychological support through check-ins and conversations could also inform strategies to improve wellbeing.

Discussion

We sought to understand the health care and aged care systems from the perspective of family care partners of people with dementia. Through longitudinal journey mapping with monthly interviews, we found that the needs of care partners fluctuated over time, with heightened needs at the point of diagnosis, when requiring in-home care, and when transitioning into residential care. We identified three broad needs that care partners expressed (psychological support, social connection, and knowledge), with corresponding risks to wellbeing (psychological distress, social isolation, and disempowerment) when these needs were unmet. Risk factors for unmet needs emerged especially regarding social and financial resources, and cultural and language background. Referral to a navigator or caseworker at the time of diagnosis would assist in addressing needs and mitigating risks.

Key Timepoints in the Dementia Care Journey

Our findings suggested a critical role of time in impacting the support that family care partners need from healthcare and aged care systems. At diagnosis, the needs for knowledge were critical and information was often not provided. Our longitudinal interviews identified that access to formal supports often came late, due to a lack of knowledge about what was available, and that care partners experienced grief and regret about not knowing critical information sooner. The transition into residential care was another key time point of heightened needs and distress for family carers. Previous research has provided evidence that once people with dementia transition into residential care they are vulnerable to consequences of poor staffing, neglect, and exposure to abuse (Eagar et al., 2020; Fang & Yan, 2018). This can cause stress for family care partners (Cheng, 2017). Our findings suggest family and financial stress is heightened in the time prior to admission, due to the complexity of the system, the need for a downpayment or bond, the frustration associated with bureaucracy, and time delays.

Our exploration of time as a critical aspect of the dementia care journey aligns closely with a recent conceptual model developed by Gallagher-Thompson et al. (2020), which emphasized the changing needs and experiences of people with dementia and family care partners through the stages of dementia, with key transitions as care settings and interactions with formal systems change. Our findings provide evidence for the alignment of this model with our participants’ experiences and build on previous research reporting the journeys and support needs of people living with, or caring for someone with, rare forms of dementia (Rossi-Harries et al., 2024; Sullivan et al., 2023). Awareness of the potentially foreseeable time-based nature of unmet needs means that key needs—knowledge, support, and connection—may be differentially prioritized at different stages. Educating health care providers could enable them to be more responsive to carer needs, helping them to target recommendations for the right kind of resources, contacts, and strategies at the right time.

Intersecting Risks That Compound Unmet Needs

Our findings highlighted how cultural and language background as well as socioeconomic status can increase risks of unmet needs. Care partners reflected on the value of congruency between the language backgrounds of the person with dementia and paid carers and resources. This is especially important in cases when people with dementia experience reversion to their first language (Tipping & Whiteside, 2015), which can result in inability to communicate with care staff and family, exacerbating isolation and increasing reliance on family care partners. By matching resources and support to an individual’s preferred language and culture, opportunities emerged for social connection and reduced isolation. Despite these benefits, there was a lack of formal resources and information available in community languages, which contributed to limited agency for people with dementia, increased carer responsibilities, and compounded lower dementia literacy. Navigating the system is already complex, and for care partners and people with dementia with additional risks, there is an even greater gap between what is currently available and what is required. This was the case for our participants, even where care partners spoke English and had relatively high levels of education, and would likely have a bigger impact in a more diverse participant cohort. It is recommended that providers adopting a person-centered approach prioritize cultural and language-based needs. By providing translated and dementia-friendly resources and services (e.g., information brochures, community groups, language-matched care), providers could improve wellbeing of both care partners and people with dementia.

Service Improvement: Implications for Policy and Practice

Our goal was to develop recommendations for systemic change, putting the onus of education and intervention onto health care systems rather than onto individual carers, and to transform unfriendly systems and poorly equipped health care professionals. Ideally, the postdiagnosis care continuum for dyads should be seamless, and provide support to remain at home where that is possible and desirable (Access Economics, 2009). To achieve this, participants wanted someone who could be on-call throughout their journey as needs changed, and access to stage-specific information and support services. The GP/family doctor was reported as the most frequent contact care partner had with the health care system. However, many reported that GPs were largely unable to meet their needs due to limited availability and/or knowledge of dementia. As an alternative, care navigators or caseworkers with more specialised dementia support expertise provide a promising solution to meeting carers’ needs for knowledge, social connection, and psychological support. For example, “patient navigators”—terminology first coined by Freeman et al. (1995)—are common in other health care contexts, such as oncology, where they were introduced to reduce health disparities (Dwyer et al., 2022; Natale‐Pereira et al., 2011). In an Australian context, the concept of a “systems navigator” was previously proposed as part of the “ideal” dementia care journey to provide information, support, and links to services (Fitzgerald et al., 2019).

In the present study, a minority of care partners were referred to a local hospital psychologist (“Dementia Care Advisor”) and found that this service was invaluable. The monthly interviews for our research project were also therapeutic for some participants (Quinn & Blandon, 2020), highlighting the extent of unmet need and the minimal amount of contact that could make a difference to quality of life. This observation also highlights the opportunity for longitudinal research methods to move beyond mere data collection, to become part of the broader care for family carers, by imagining and contributing insights that may inform a better future (Lury & Wakeford, 2012; Smith & Phillipson, 2022).

As a minimum, the routine practice of referring all dementia patients together with their primary family care partner to a navigator/case worker at the point of diagnosis is recommended to address inequities. Ideally, this trained worker would be available to people with dementia and care partners for the duration of their dementia journey and accessed at key points of need or transition. Research evidence suggests that providing family care partners with support at the point of diagnosis alone can contribute to net saving for government funding, with health and social care cost savings associated with people with dementia remaining at home for longer (Knapp et al., 2024). As the ideal solution, however, we recommend health and aged care system reform that reduces the complexity of processes and streamlines services, towards a system that can be navigated without requiring dedicated assistance.

Funding

This research was funded in part by Maridulu Budyari Gumal, the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE), through the Age and Ageing Clinical Academic Group (AAA CAG) Implementation and Translation Funding Scheme (2022) grant awarded to CH, RB, LH, DNC, and MDG.

Conflict of Interest

None.

Data Availability

Illustrative participant quotes and core interview questions are available in the Supplementary Material. Full transcripts are not available to maintain participant confidentiality. This study was not preregistered.

Author Contributions

C. H., L. H., D. N. C., M. D. G., and R. B. conceived the design of the study and materials. R. B and M. C conducted interviews with carers. R. L.-S., R. B., O. M., N. M., and C. H. conducted the analysis of the interviews and discussed the research findings and the interpretation of the results. R. B., R. L.-S., O. M., N. M., and C. H. collaboratively drafted the manuscript. All authors provided critical feedback and edits and approved the final version of the manuscript.

Ethics Approval and Consent to Participate

This study was granted ethical approval by Western Sydney University Human Ethics Research Committee (Approval number: H14858). Participants gave informed consent for the interviews. All methods were carried out in accordance with relevant guidelines and regulations.

Consent to Publish

Participants provided consent for publication of this research.