Navigating Dementia Services: An International Review of Informal Caregiver Perspectives

Search

Study selection and searches were guided by the PICO framework, which is recommended to enhance comprehensiveness, with a structured search strategy applied across multiple databases using keywords, synonyms, and subject headings (Methley et al., 2014). Searches were conducted in November 2022 using MEDLINE, PsychInfo, and CINAHL, focusing on informal dementia carers’ interactions with dementia services. Studies published in English were included, regardless of the country of origin, with no date restrictions. Hand searching using snowballing and citation searching were also used. The search was updated in October 2024. The details of inclusion and exclusion criteria, and search terms is shown in Table 1.

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Table 1.

Study Inclusion and Exclusion Criteria

Inclusion criteria	Exclusion criteria
Participants
Participants were informal carers of someone with dementia	Care staff or formal care providers Person with dementia
Intervention
Dementia health services (e.g. memory clinic, community mental health team)	Non-health services (e.g. day programmes, respite, support groups) Non-dementia focussed services
Comparison
Qualitative studies (including interviews and focus groups)	Quantitative studies
Outcome
Studies exploring informal carer experiences, perspectives, perceptions, expectations	Studies quantifying barriers, factors, behaviours
Search terms
Population: Carer OR caregive* - “in”: Abstract (AB)
Intervention: Dementia service* OR memory service* OR dementia specialist OR dementia care – “in” abstract (AB)
Comparison: Qualitative data collection and analysis
Outcome: Experience* OR perspective* OR view* OR perception* OR attitude* OR expectation – “in” abstract (AB)

Inclusion Criteria

Studies were selected based on their focus on informal dementia carers’ experiences with dementia health services. The Population, Intervention, Comparison, and Outcome (PICO) framework (Richardson et al., 1995) guided the inclusion criteria. Two independent reviewers applied these criteria using the Rayyan web app (Ouzzani et al., 2016). After removing duplicates, 2,581 articles were identified, which were screened by title and abstract. Inter-rater agreement during abstract screening was high, with reviewers agreeing on 2243 out of 2581 records (86.9%). Full articles were reviewed and re-assessed for relevance. Twenty-two articles could not be retrieved in full due to being unpublished or incomplete studies, and in some cases abstracts were available in English, but full texts were published in other languages for which translations were not accessible. Exclusion criteria included studies focusing solely on general caregiving experiences without specific reference to dementia health services. Non-health services, such as day programmes, respite, and support groups were excluded. This focus reflects a methodological decision, rather than a judgment on the relative importance of health or social care services. Diagnosis and coordination of dementia care are recognised as key areas for improving support for people living with dementia and their carers, and these are typically provided by healthcare services (World Health Organization, 2017). Focusing on health services allowed the review to provide a coherent and focused synthesis of caregiver experiences, ensuring findings are directly relevant to health service delivery and improvement. The screening process is shown in Table 2 PRISMA flowchart (Page et al., 2021).

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Table 2.

PRISMA Flow Diagram (Page et al., 2021)

Critical Appraisal

Thirty-two studies met the inclusion criteria and were appraised using the Critical Appraisal Skills Programme (CASP) qualitative checklist (CASP, 2019), assessing study validity, results, and clinical applicability. A second reviewer independently appraised 37.5% of the included papers for methodological quality, and this was compared to the lead authors assessments to check for accuracy. There was complete agreement across the studies, yielding an observed agreement of 100%. Studies were rated as high quality (eight or more criteria met), medium quality (five to seven criteria met), or low quality (fewer than four criteria met), with low-quality studies excluded. Two studies were removed due to low methodological quality, leaving thirty studies for inclusion (Table 3).

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Table 3.

Study Characteristics

Authors	Date	Design	Country	Participants	Intervention/service	Dementia type	Carer relationship
Abley et al.	2013	Interviews	UK (England)	27 people living with dementia 26 carers	Memory clinics	Unspecified. “Memory problems”, during and post diagnostic process	Unspecified
Assfaw et al.	2024	Interviews and diary study	USA	10 carer	Multiple	Unspecified	7 child, grandchild 1, In-law daughter 1, spouse 1
Behrman et al.	2017	Interviews	UK (Wales)	10 carer 10 professional	CMHT/Memory clinic	Unspecified	8 spouse, 2 child
Benedetti et al.	2013	Interviews	Australia	9 carer	Unspecified	Unspecified	2 spouse, 8 child
Bowes and Wilkinson 2003	2003	Case studies	UK (Scotland)	4 case studies 11 professional	Unspecified	Unspecified	Unspecified
Cotton et al.	2021	Interviews	USA	10 carer	Unspecified	Unspecified	7 child, 2 spouse, 1 multiple caring role
Davies-Abbott et al.	2024	Interviews	UK (Wales)	9 carer 1 person living with dementia	Unspecified	Frontotemporal dementia 6, primary progressive aphasia 3, posterior cortical atrophy 1. person living with dementia – semantic dementia.	Unspecified
Dodd et al.	2014	Interviews	UK (England)	Primary care: Health care professional 10, patient 6, carer 7 Secondary care: Health care professional 8, patient 7, carer 8	Primary care dementia assessment clinic/secondary care memory services	Unspecified	Unspecified
Dombestein et al.	2020	Focus group	Norway	15 carer	General health services with particular mentions of dementia specialist nurses and memory clinics	Unspecified	Child
Fitzgerald et al.	2018	Focus group	Australia	7 people living with dementia, 18 carer	Unspecified	Unspecified	Unspecified
Giebel et al.	2021	Interviews	UK	42 carer, 8 people living with dementia	Social support services - includes memory service and tertiary support	Unspecified	Unspecified
Giebel et al.	2022	Interviews	UK	16	Social support services - includes memory service	Alzheimer’s (8), mixed (2), vascular (2), YOD (3), other (1)	Spouse 10, adult child 10
Gilbert et al.	2021	Interviews	Australia	104	Multiple	Unspecified	Multiple
Gorska et al.	2013	Interviews	UK (Scotland)	31: 12 people living with dementia, 19 carer	Multiple	Alzheimer’s, vascular, mixed, unspecified	Child and spouse
Innes, Abela + Scerri	2011	Interviews	Malta	17 carer	Memory clinic	Unspecified	4 spouse, adult child 9, child-in-law 3
Juttla	2015	Interviews	UK (England)	12 carer	Multiple, includes CPN	Unspecified	5 spouse, 7 intergenerational carer
Karlsson et al.	2014	Focus groups	Multiple: England, Estonia, Finland, France, Germany, The Netherlands, Spain, Sweden	25 people living with dementia, 112 carer	Multiple	Unspecified	Spouse, child, grandchild, sibling, nephew, niece
Ketchum et al.	2023	Semi-structured interviews	USA and Germany	18 carer	Multiple/unspecified	Unspecified	Child 14, spouse 2, grandchild 1, carer for multiple people 1
Kitamura et al.	2019	Interviews	Japan	5 carer	Home visit nursing (dementia specialist nurses)	Unspecified	Daughter 2, daughter in law 2, non family carer 1
Lillo-Crespo et al.	2018	Case study/interviews	Scotland, Slovenia, Portugal, Finland, Czech rep, Spain	56 (21 people living with dementia, 23 family carer, 12 paid staff)	Multiple/unspecified	Unspecified	Spouse, child, child-in-law
Pashby et al.	2009	Semi-structured interview and focus group	Canada	15 health care staff, 15 carer	Inpatient dementia assessment unit	Unspecified	Child, Spouse/partner
Risco et al.	2016	Focus group	Spain	25 professionals, 20 carer, 15 people living with dementia	General services/multiple	Unspecified	Unspecified
Robertson et al.	2021	Interviews	New Zealand	19 - 18 carer, 1 member of Alzheimer’s organisation	Alzheimer’s association	Unspecified	14 spouse - other participants unspecified
Robinson et al.	2009	Focus groups	Australia	15 carer	General services/multiple	Unspecified	Parent, friend, spouse
Samsi et al.	2013	Interviews	UK	27 people with cognitive impairment, 26 carers	Memory services	Unspecified	Spouse 15, daughter 3, extended family 2
Sutcliffe et al.	2015	Focus group	UK	27 - 19 people living with dementia and 16 carer	General services/multiple	Unspecified	Unspecified
Turjamaa et al.	2020	Thematic interview	Finland	10 carer	Memory clinic	Unspecified	Spouse
Walker et al.	2018	Semi-structured interviews	Australia	16 - 9 people living with dementia, 7 carer	Multiple	Unspecified	Unspecified
White et al.	2024	Semi-structured interviews	Australia	25 carer	Multiple	Unspecified	19 child, wife 6
Willis et al.	2009	Interviews	UK	16 people living with dementia, 15 family carer	Croydon memory service	Alzheimer’s 6, mixed dementia 4, vascular 1, other 2, no dementia 3	Spouse, child
Wolverson et al.	2023	Semi-structured interviews	UK	7 carer	Mental health inpatient ward	Multiple	4 wife, 1 husband, 1 son, 1 daughter-in-law

Data Synthesis

This review focused on synthesizing qualitative data regarding carers’ experiences with dementia services. A qualitative interpretive approach was adopted to identify and interpret common themes, generating new insights. Our thematic synthesis involved three stages drawing upon Thomas & Harden (2008)’s framework (Thomas & Harden, 2008):

(1) Stage One: Coding text – line-by-line coding of findings sections to capture meaning.

NVivo software was used for analysis, with stages one and two conducted in parallel. The findings from each study were combined into a list of descriptive themes, and Stage Three generated deeper insights through discussion and interpretation, and final conceptualization of the themes by the three members of the research team (LM, SC and DC) (Table 4).

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Table 4.

Overview of Themes, the Articles in Which They Were Found, and Examples From the Articles

Theme heading	Articles theme present in	Examples from the articles
The Impact of navigating complex and confusing service delivery	Abley et al., 2013; Assfaw et al., 2024; Behrman et al., 2017; Benedetti et al., 2013; Cotton et al., 2021; Davies-Abbott et al., 2024; Dodd et al., 2014; Dombestein et al., 2022; Fitzgerald et al., 2019; Giebel et al., 2021, 2022; Gilbert et al., 2022; Górska et al., 2013; Innes et al., 2011; Karlsson et al., 2015; Ketchum et al., 2023; Risco et al., 2016; Robertson et al., 2022; Robinson et al., 2009; Samsi et al., 2014; Sutcliffe et al., (2015); Turjamaa et al. (2020); Walker et al. (2018); White et al. (2024); Wolverson et al. (2023)	“Systemic safety failures were frequently identified, with almost unanimous dissatisfaction with the complexity of the care system.” (Behrman et al., 2017). “Caregivers found it time consuming and frustrating to access care, follow up with services several times, and navigate a fragmented and understaffed bureaucratic system.” (Ketchum et al., 2023) “Where support for dementia was provided, the respondents felt reassured that someone was available to support them if they needed it. However, contrasting reports suggested that others were offered little or no care support.” (Giebel et al., 2021)
Sub theme: The Impact of Systemic Failure to Prioritize Communication	Abley et al., 2013; Assfaw et al., 2024; Behrman et al., 2017; Benedetti et al., 2013; Cotton et al., 2021; Davies-Abbott et al., 2024; Dodd et al., 2014; Dombestein et al., 2022; Fitzgerald et al., 2019; Giebel et al., 2021; Gilbert et al., 2022; Górska et al., 2013; Innes et al., 2011; Karlsson et al., 2015; Ketchum et al., 2023; Kitamura et al., 2019; Lillio-Crespo et al. (2018); Liu et al. (2021); Pashby et al. (2009); Risco et al. (2016); Robertson et al. (2021); Robinson et al. (2009); Samsi et al. (2014); Sutcliffe et al. (2015); Turjamaa et al. (2020); White et al. (2024)	“I think it took that length of time to get there because of the fact that the services were not joined up. If each of them had been talking to one another, I think things would have moved a but quicker.” (direct carer quote, Gorska et al., 2013 ) “Communication seemed inconsistent, with the delivery of what were thought to be mixed messages (different things by different people), which, unsurprisingly, caused anger and distress.” ( Abley et al., 2013 ) “Caregivers described specific situations that influenced service engagement such as staff lacking knowledge of dementia, professionalism, and poor communication skills.” ( Cotton et al., 2021 )
Sub theme: The Importance of a Relational approach	Assfaw et al., 2024; Behrman et al., 2017; Benedetti et al., 2013; Cotton et al., 2021; Davies-Abbott et al., 2024; Dodd et al., 2014; Dombestein et al., 2022; Fitzgerald et al., 2019; Giebel et al., 2021; Gilbert et al., 2022; Górska et al., 2013; Karlsson et al., 2015; Ketchum et al., 2023; Kitamura et al., 2019; Liu et al., 2021; Pashby et al., 2009; Robertson et al., 2022; Samsi et al., 2014; Sutcliffe et al. (2015); Turjamaa et al. (2020); White et al. (2024); Willis et al. (2009)	“Caregivers often felt excluded from the diagnostic process and the sharing of the diagnosis […] The sense of being uninvolved was also related to caregivers having to ‘fight’ and ‘chase’ clinicians for appointments and referrals.” “They (carers) found it demotivating to have their knowledge or opinions disregarded, or when their consistent care for their parents seemed to have been taken for granted” ( Dombestein et al., 2021 )
Services causing harm	Abley et al., 2013; Behrman et al., 2017; Davies-Abbott et al., 2024; Dombestein et al., 2022; Fitzgerald et al., 2019; Giebel et al., 2021; Gilbert et al., 2022; Górska et al., 2013; Karlsson et al., 2015; Ketchum et al., 2023; Kitamura et al., 2019; Lillio-Crespo et al. (2018); Liu et al. (2021); Pashby et al. (2009); Risco et al. (2016); Robinson et al. (2009); Samsi et al. (2014); Turjamaa et al. (2020); White et al. (2024); Willis et al. (2009)	“Participant stories varied considerably around assessments conducted, indicating that standard guidelines for evidence-based best practice referral and assessment processes were not being followed. Some consumers and carers felt confused because they were referred to several different types of doctors. The lack of adherence to guidelines led to individuals being left feeling stressed and anxious.” ( Fitzgerald et al., 2019 )
Thinking about and planning for an unclear future	Abley et al. (2013); Fitzgerald et al. (2019); Giebel et al. (2021); Gilbert et al. (2022); Ketchum et al. (2023); Kitamura et al. (2019); Robinson et al. (2009); Samsi et al. (2014); Sutcliffe et al. (2015); Turjamaa et al. (2020); White et al. (2024); Willis et al. (2009)	“The caregivers were shocked by the diagnosis of dementia because they had never thought that the recipient would have dementia. The caregivers became very anxious about the future because they did not know how to care for people with dementia.” ( Kitamura et al., 2019 ) “Both people with memory problems and carers reported being shocked, wanting time to let it all ‘sink in’, and being dominated by feelings of concern for whether their ‘loved one’ could cope in the future.” ( Samsi et al., 2014 )
The centrality and Importance of valuing difference, diversity and culture	Assfaw et al. (2024); Benedetti et al. (2013); Cotton et al. (2021); Fitzgerald et al. (2019); Gilbert et al. (2022); Juttla (2015); Ketchum et al. (2023); Pashby et al. (2009)	“I went looking and finding the information, but again, applying that information to our culture; that was not possible for us. So, you know if someone was able to understand our culture and give us the right advice; that would have been good” (Gilbert et al., 2022) “Caregivers also expressed that if they sought outside support for dementia, they would want the people living with dementia to receive high quality and culturally respectful care. This was because of concern emanated from their experiences of discrimination observed in institutional settings.” (Assfaw et al., 2024)

The Impact of Navigating Complex and Confusing Service Delivery

Carers reported significant challenges navigating the fragmented and bureaucratic dementia care system, describing it as overwhelming and disjointed (Assfaw et al., 2024; Cotton et al., 2021; Giebel et al., 2021). A major frustration was the delay in obtaining a formal diagnosis, which often delayed access to essential care and created uncertainty about available services (Cotton et al., 2021). The gap between pre-diagnosis and post-diagnosis support created a sense of urgency for some, with carers lamenting that “all the doors opened” only after the diagnosis was received, a moment that was often “too late” for meaningful intervention (Gorska et al., 2013). Once diagnosed, carers found the system to be “labyrinth-like” and struggled with bureaucratic hurdles, leaving them feeling unsupported (Samsi et al., 2014; Ketchum et al., 2023).

Carers expressed a strong desire for guidance, epitomised by the statement, “I wish they could kind of lay out the path for you” (Cotton et al., 2021). The lack of professional coordination left carers to navigate care on their own, which was emotionally draining (Ketchum et al., 2023) with one carer clearly citing their frustrations by stating “It is such a stupid system.” (Giebel et al., 2021). Carers described services as narrowly focused, and the lack of professional coordination often left them to piece together care themselves, resulting in a feeling of being “in the system” but still disconnected from the support they needed with one carer stating: “services exist but it is hard work finding what is out there and unless you are fully in the system and in a memory service in the residential address it is almost impossible to access information as to what’s out there” (Giebel et al., 2021).

Carers underscored the importance of well-defined care pathways and a single point of contact to streamline coordination, which could alleviate the confusion and frustration of navigating a fragmented system. One carer noted, “I’d just like a joined-up service, it’s the main thing.” (Gorska et al., 2013). The need for a clear point of contact to provide up-to-date, evidence-based information and support for carers was repeatedly highlighted, with suggestions for peer engagement and education to help them manage symptoms and plan for the future (Fitzgerald et al., 2018; Giebel et al., 2021; Risco et al., 2016). Some carers suggested that peer support and education could help manage symptoms and plan for the future (Fitzgerald et al., 2018).

Professional support, such as from navigators or specialists, was highly valued (Gilbert et al., 2022; Liu et al., 2021). Carers appreciated timely education on dementia, symptom management, and long-term planning (Ketchum et al., 2023). When support was appropriate and timely, carers felt reassured and less stressed (Innes et al., 2011; Juttla, 2015; Karlsson et al., 2015; Liu et al., 2021; Pashby et al., 2009; Robertson et al., 2022; Robinson et al., 2009; Sutcliffe et al., 2015; Turjamaa et al., 2020; Willis et al., 2009). One carer described the reassurance of responsive services: “...they’ve [memory team] been there to support us… I could speak to them, they upped his medication… just knowing there was somebody there…” (Giebel et al., 2022). Specialist dementia nurses offering home visits were especially valued for both practical and emotional support (Kitamura et al., 2019). However, many carers received minimal post-diagnostic support, sometimes limited to medication (Dodd et al., 2014; Dombestein et al., 2021). A lack of clarity around services, under-resourcing, and inadequate staff training added to carer strain (Giebel et al., 2021; Innes et al., 2011).

Even when support was offered, carers often did not know what questions to ask or which services could actually help, particularly right after receiving a diagnosis (Abley et al., 2013). Without clear guidance, many carers felt unequipped to handle the challenges that arose, with one carer lamenting: “I didn't know how to deal with her irregular symptoms, and I've been annoyed at her because she didn't want professional help […] If I had gotten the right information and advice up front, maybe I wouldn't have been that frustrated […] Maybe it would have been easier for the both of us” (Dombestein et al., 2022).

Carers also shared frustrations with delayed interventions, with some describing missed opportunities for assistance due to the late arrival of support (Giebel et al., 2022), having insufficient information, without guidance (Innes et al., 2011; Ketchum et al., 2023) and disappointment over the lack of post-diagnosis support (Dodd et al., 2014).

In short, the complexity and delays in dementia services highlight significant gaps in the system’s ability to meet carers’ needs and provide effective support.

The Impact of Systemic Failure to Prioritize Communication

Poor communication and fragmented dementia care were consistently cited as major barriers to timely, appropriate support. This issue spanned regions and systems, with carers reporting added strain due to disjointed services (Davies-Abbott et al., 2014; Giebel et al., 2021; Gilbert et al., 2022; Gorska et al., 2013). Many acted as intermediaries, relaying information between professionals, leading to delays and confusion (Giebel et al., 2021; Gilbert et al., 2022; Sutcliffe et al., 2015). One carer remarked, “...services were not joined up. If each of them had been talking… things would have moved quicker” (Gorska et al., 2013). These failures not only delayed care but also made the process feel unsafe (Behrman et al., 2017; Gorska et al., 2013).

Uncertainty about who to communicate with added to the confusion. Carers often felt disempowered by the lack of a clear point of contact, as one carer described: “I wish someone would tell me something… I can’t get anybody to listen to me” (Robinson et al., 2009). This lack of clarity was compounded by inconsistent communication from professionals, leaving carers feeling unsupported and uncertain about how to proceed.

Although some carers appreciated clear and prompt communication, efficient communication was not the norm. Inconsistent communication, including missed follow-up calls, exacerbated carers' emotional distress (Abley et al., 2013; Pashby et al., 2009; Willis et al., 2009). Additionally, a lack of transparency regarding test results and outcomes added to carers’ frustrations, with one carer noting, “I can’t understand when you go into a consultant, and you’ve got someone who’s got memory problems and speech problems, and yet the partner, the wife, isn’t allowed” (Davies-Abbott et al., 2024).

In sum, systemic failures in communication and coordination significantly impacted the dementia care system, creating unnecessary burdens for carers and delaying access to appropriate care. A more integrated and communicative approach to care is essential to meet the needs of both carers and individuals living with dementia.

The Importance of a Relational Approach

Effective dementia care depends on strong, collaborative relationships between professionals, people living with dementia, and informal carers. However, many carers face communication barriers and power imbalances that undermine these relationships. While some felt supported when mutual understanding was present, others reported feeling excluded and dismissed (Turjamaa et al., 2020). One carer stated, “I want healthcare professionals to acknowledge my experience… what we say is fundamentally true” (Dombestein et al., 2022). A failure to recognise carers as experts on the people living with dementia’s personal needs, combined with patronising attitudes, led to frustration, isolation, and disengagement (Willis et al., 2009; Cotton et al., 2021; Fitzgerald et al., 2019; Gorska et al., 2013). Exclusion from care decisions and unclear responsibilities often escalated tensions, further damaging trust (Behrman et al., 2017; Karlsson et al., 2015). These power imbalances erode collaboration, a cornerstone of effective dementia care

Trust and mutual respect are critical for fostering collaborative relationships. Carers who had trust in their healthcare professionals felt more supported and confident in accessing services. One carer emphasized the importance of having a reliable contact: “You’ve always got a chance of ringing them… they understand and that makes a big difference” (Willis et al., 2009). The failure to foster mutual respect and understanding between professionals and carers is a critical flaw in dementia care. Without this foundation of trust, professionals and carers are unable to engage in meaningful, productive partnerships that would otherwise improve the care experience for the person living with dementia with one carer clearly stating “mutual respect is fundamental” (Behrman et al., 2017).

In summary, the failure to develop respectful, collaborative relationships between carers, professionals, and people living with dementia significantly hinders quality dementia care. Power imbalances and communication breakdowns prevent carers from fully contributing to care, leaving both carers and people living with dementia without the support they need. To improve dementia care, professionals must actively engage with carers, ensuring their voices are respected and their expertise is acknowledged.

Services Causing Harm

Studies highlighted that carers often experience significant harm due to delayed diagnoses and inadequate services, leading to emotional distress and physical exhaustion. Prolonged diagnostic delays leave carers in uncertainty, as one shared: “I just struggled… probably for about 3 years … I didn’t have a diagnosis” (Ketchum et al., 2023). Such delays heighten anxiety and complicate care management. One carer expressed exhaustion over waiting for support: “I’m just so drained and so tired... and they say I’ve got to wait another six months... why do I have to wait?” (Robinson et al., 2009). Many felt “in limbo” and that valuable time was being lost, feelings intensified by media emphasis on early diagnosis and intervention (Samsi et al., 2014; White et al., 2024)

Once diagnosed, the delivery of information is often insensitive and unclear, causing additional emotional strain (Abley et al., 2013; Davies-Abbott et al., 2024; Samsi et al., 2014). Carers have described receiving diagnoses in impersonal ways, such as through letters, which left them feeling devastated and abandoned by the system (Abley et al., 2013; Samsi et al., 2014). After diagnosis, many carers report a lack of follow-up support, especially for those caring for individuals with vascular dementia, leaving them feeling lost and without clear guidance (Samsi et al., 2014).

Inconsistent application of evidence-based guidelines and unclear communication also lead to fragmented care. One carer described the experience of being shuffled between organizations, resulting in “a horrible journey” marked by exhaustion and confusion (Gilbert et al., 2022). Additionally, carers frequently report being dismissed or ignored by professionals, who fail to recognize their expertise in caring for their loved ones. As one carer recalled, a care coordinator told them, “It didn’t matter if I was there for my mother or not” (Dombestein et al., 2022). This lack of respect contributes to significant emotional harm.

Overall, these studies reveal a deeply flawed dementia care system, where delays, poor communication, and a failure to follow guidelines precipitate and perpetuate emotional and psychological harm for carers. To improve care, it is essential to address these systemic issues and ensure that carers are treated with the dignity and respect they deserve while being supported in their caregiving roles.

Thinking About and Planning for an Unclear Future

Dementia carers face immense challenges due to the unpredictable progression of the disease and the lack of adequate support for future planning. While carers manage complex caregiving demands, they often struggle emotionally, physically, and psychologically due to the uncertainty surrounding the future of both the person living with dementia and their caregiving role (Alves et al., 2019; Dickinson et al., 2017; Watson et al., 2019; Yu et al., 2018). Despite the recognized need for effective support in future planning (NICE, 2018), carers are often left without sufficient guidance.

The emotional burden of receiving a dementia diagnosis is often overwhelming. The impact of receiving a diagnosis was described as “terrifying”, with carers feeling fear and helplessness about the unknown future (Robinson et al., 2009). The sense of inevitable decline, shaped by the experiences of others, amplifies this distress, leaving carers with a future they “didn’t want to know about” (Sutcliffe et al., 2015). This emotional turmoil is exacerbated by a lack of knowledge and resources to plan ahead, with one carer sharing, “I was filled with anxiety, thinking about our future life and care for my mother” (Kitamura et al., 2019).

Uncertainty in the caregiving journey heightens stress, with carers expressing a need for more comprehensive support (Abley et al., 2013; Fitzgerald et al., 2019; Gilbert et al., 2022; Ketchum et al., 2023; Kitamura, 2021; Robinson et al., 2009; Samsi, 2014; Sutcliffe et al., 2015; Turjamaa et al., 2020). A lack of timely, accessible information on future planning leaves carers feeling adrift and unable to regain control. Some attempt to prepare for future needs, but without guidance, these efforts are often reactive. One carer reflected: “You want to make preparations… hoping you never need them, but knowing you probably will… it’s a question of when do you get involved…” (Sutcliffe et al., 2015).

A major barrier to future planning is the inaccessibility of clear, timely information. Carers often report detrimental effects from not receiving relevant guidance about dementia and available care options. While some found information reassuring and felt that it better enabled preparation stating that “knowing everything was better than not knowing” (Abley et al., 2013; Fitzgerald et al., 2019; Ketchum et al., 2023). Others were overwhelmed by the volume and complexity of information. One carer explained: “if a person knows nothing and is just getting started, it is impossible to understand the whole process. I need hand-to-hand guidance on the future of the patient and caregiver. I have to understand the causes and changes that will take place… The caregiver must understand what the future will be. But this is confusing” (Turjamaa et al., 2020).

In summary, dementia carers are left to navigate an uncertain future without the necessary emotional, informational, and practical support. The lack of cohesive, accessible resources leaves carers feeling overwhelmed and unsupported, intensifying their sense of helplessness and undermining their ability to effectively care for their loved ones. The call for “hand-to-hand guidance” reflects the need for a more nuanced, supportive approach to information delivery, one that is not only culturally and linguistically appropriate but also paced in a way that allows carers to absorb and act on it effectively.

The Centrality and Importance of Valuing Difference, Diversity, and Culture

Carers from culturally and linguistically diverse (CALD) backgrounds face unique challenges in navigating dementia care due to cultural, linguistic, and systemic barriers that hinder access to information, services, and effective engagement with healthcare professionals (Gilbert et al., 2022). While all carers share common experiences, CALD carers have specific needs shaped by language, immigration history, income, and education, affecting service use (Cotton et al., 2021). Studies show they often prefer culturally aligned services, benefiting both themselves and the person living with dementia (Benedetti et al., 2013; Cotton et al., 2021; Gilbert et al., 2022; Ketchum et al., 2023; Pashby et al., 2009; Xiao et al., 2013).

One significant challenge is the cultural belief that caregiving should primarily be a family responsibility. For many CALD carers, this leads to a reluctance to seek professional help until the caregiving situation becomes a crisis (Benedetti et al., 2013). Even when these carers are aware of available services, language and cultural barriers prevent them from fully utilizing them. One carer shared, “I went looking and finding the information, but again, applying that information to our culture; that was not possible for us” (Gilbert et al., 2022). This highlights the gap in dementia services, where a lack of cultural and linguistic sensitivity prevents effective engagement with CALD carers.

A disconnect between cultural beliefs and professional care models further complicates support for CALD carers. Many believe care should remain within the family home, conflicting with professional recommendations for respite or institutional care. This mismatch often leads to frustration and strained relationships with providers. One carer shared, “We tend to hang on until… there’s really no other option” (Benedetti et al., 2013), while another rejected institutional care outright: “The response was ‘nursing home,’ and as soon as we heard that, it wasn’t an option” (Gilbert et al., 2022). These accounts highlight the tension between cultural expectations and formal care practices.

Language barriers further complicate caregiving, especially when carers must act as translators for the peerson living with dementia. This added role increases stress and makes navigating the care system more difficult. As one carer noted, “You want elderly people to be independent... but the non-ethno-specific services make people dependent… [They] don’t know how to navigate unless their English is fairly proficient” (Xiao et al., 2013). Such reliance on carers marginalizes culturally and linguistically diverse (CALD) elders and adds to carers’ burdens. These linguistic, cultural, and systemic challenges underscore the need for culturally competent, responsive services. The evidence challenges the assumption that a one-size-fits-all model is effective, showing how lack of cultural sensitivity perpetuates disengagement and deepens the vulnerability of CALD carers and families.

Research and Practice Implications

Despite valuable insights gained from this review, several significant questions remain regarding the gap between policy recommendations and the lived experiences of dementia carers, particularly in the context of future planning. Previous research (Greenwood et al., 2019; Greenwood et al., 2019; Mansell & Wilson, 2010; Pryce et al., 2017) has highlighted that, for some dementia carers, thinking about the future is challenging and often met with fear and negativity. Although clinical guidelines emphasize the importance of professional support for carers to plan for future challenges, this review reveals that, in practice, such support is frequently absent or inadequate.

This dissonance between policy and lived experience underscores the need to reevaluate how policies are developed and implemented. Ensuring that dementia care policy meets the needs of carers requires incorporating the perspectives of those with lived experience. Our modest aim is that this review will start important policy dialogues to this end. A crucial step in this process will be the implementation of complementary research approaches that assess both the satisfaction with dementia services and the effectiveness of their delivery. A comparative survey study, for example, could be used to assess the satisfaction levels of both carers and professionals, critically examining the alignment between policy goals and the actual experiences of carers and professionals delivering services. By collecting service-specific quantitative data, such a study could highlight discrepancies between service expectations and satisfaction, identifying areas where service delivery needs significant improvement.

Additionally, qualitative research, such as interviews with key stakeholders, including people living with dementia, carers, researchers, policymakers, and professionals, could provide in-depth insights into how dementia care policies are operationalized in practice. A focus on the specific challenges carers face, would be beneficial in exploring ways to improve dementia care. Attention should be given to improving communication, service coordination, and cultural sensitivity, and how these factors can be integrated into care models. The qualitative approach will uncover nuanced barriers that may not be captured through quantitative surveys, offering a deeper understanding of the lived experiences of those directly involved in dementia care.

In sum, future research and practice must address the gap between policy recommendations and the lived experiences of dementia carers. Further exploration of this issue, from the viewpoints of key stakeholders, including people living with dementia, their carers, researchers, policymakers, and professionals responsible for dementia service design and delivery, is needed to understand how research and policy translate into practice.

Moreover, future research on digital interventions in dementia care should focus on how these technologies align with the interpersonal and relational aspects of care emphasized by participants. AI-powered tools, for example, can translate complex speech into clearer language, potentially improving communication between people living with dementia, carers, and services (Su et al., 2022). However, it is vital that such innovations support person-centred care, social connection, and cultural diversity, as carers prefer technologies that complement—not replace—the human element of care (Brookman et al., 2023). Research should explore how digital tools enhance, rather than undermine, the crucial relationships at the heart of effective dementia care.