ABSTRACT
Objective
To explore the risks and barriers to care of informal carers of farmers living on‐farm with dementia and cognitive impairment.
Methods
Seven individual semi‐structured telephone interviews were conducted between June and July 2025. Purposive sampling included carers to discuss their perceptions of caring for people with dementia living on farms.
Design
Qualitative study, grounded theory with iterative thematic analysis.
Setting
Rural Australia.
Participants
Informal carers.
Main Outcomes
Risks and barriers to care.
Results
Six themes were noted in the interviews: (1) Geographic isolation; (2) Physical hazards and farm responsibilities; (3) Interpersonal relationship conflict; (4) Inadequate government support; (5) Lack of local healthcare resourcing; and (6) Positive aspects of the farm environment. Participants discussed strategies for care, such as enlisting additional familial support. Some of these themes were unique to the farm context.
Conclusion
Carers of farmers with dementia highlighted a combination of risks and barriers to care that often interact synergistically with each other, leading to unmet needs for care. Carers highlighted a need for tailored solutions to care in the unique farm context. Integrating the farm environment with accessible assistance off farm appeared to be a strong desire among carers.
What Is Already Known on This Subject
People living with dementia in rural Australia and their carers face barriers to care due to a lack of awareness of services, poor accessibility to healthcare due to geographical isolation, and unequal support navigating services due to a lack of enablement and poor education.
Previous studies showed that healthcare providers of farmers living with dementia reported that their patients often encounter major risks to themselves and their closest relatives when compared to non‐farm rural and urban populations. These risks include late diagnosis of dementia and on‐farm hazards.
What This Paper Adds
Farmers living with dementia and their carers present a distinctive group of challenges that are often interrelated and may multiply the negative experience of care compared to rural counterparts.
Farmers living with dementia and their carers may find positive opportunities for living on a farm; however, there might be factors that affect these advantages.
1. Introduction
Dementia is a group of conditions defined by a pathophysiological decline in cognitive function and is an ever‐increasing and prevalent issue in medicine [1]. Dementia places a large burden on patients, healthcare systems, and the family members around the Person Living with Dementia (PLWD) [2]. In Australia, dementia rates are increasing, with the Australian Institute of Health and Welfare predicting that the rate will almost double by 2050 [3]. Previous studies found a 46% increase in rates of dementia in persons whose longest held job was in agriculture, farming, or fishing, as opposed to other professions [4]. As a population at risk, it is important to understand both pre and post‐diagnostic trends in farmers with dementia. Research investigating barriers to care in a rural context is important to understand, as healthcare service needs in this setting tend to be worse than in urban areas [5].
An Australian study compared metropolitan and rural barriers to access to care in both PLWD and those in PLWD's proximity [6]. Rurally, geographical isolation was a common theme due to patient travel to receive care, the long waitlists, and the inaccessibility of travelling specialists. This was further exacerbated by a fear that cognitive decline in patients would leave them unable to drive to their distant consultations [6]. There was dissatisfaction among PLWD when attending centralised services, associated with patients feeling as though Healthcare Professionals (HCPs) had less personal knowledge of the patient [6]. Interestingly, information on disease and support provided by HCPs was viewed as inadequate in both settings [6]. AgHealth Australia reported the risks and barriers to care perceived by healthcare workers [7]. The six areas highlighted in this study are geographic isolation, typical personality traits, transition to aged care homes, on‐farm risks, barriers to care on the farm itself, and late diagnoses.
Often, informal voluntary carers will have the closest relationships with PLWD. This places a large burden on carers, and due to gaps in knowledge, the care required only increases as the disease progresses, leading to increased emotional and physical demands [8]. This is a consistent theme reported, with a lack of awareness of services available to educate patients or carers being common [9]. Research into rural experiences of carers of PLWD in Victoria, Australia, found several barriers to care reported by carers, including a lack of awareness of services and how to access them, difficulty navigating support services, inadequate government funding to General Practitioner (GP) medicare reimbursement, non‐holistic care, lack of enablement, and education. Stigma was also outlined as being a major contributor [10].
Evidently, the literature highlights the need for ongoing research into the complex delivery of dementia care. Its neurodegenerative nature has profound effects on the relationships of the people surrounding patients, with voluntary carers often suffering the most due to the burden of care. Agricultural work, being linked with higher rates of dementia [4] confers major issues for care in the rural setting, where there are often more barriers to accessing care. Documenting the perceptions of carers is important in characterising this burden and addressing support options that can be provided by social and healthcare workers, especially in Australia, where it has not been extensively studied.
2. Aims
This preliminary study aimed to explore the perceptions of carers of farmers living on‐farm with dementia and cognitive impairment in relation to risks and barriers.
What are the positive aspects of caring for farmers with dementia?
What risks and barriers to care do carers (e.g., family, friends) identify for farmers living on‐farm with dementia and cognitive impairment?
Are there differences in the risks and barriers to care between farmers living on farms and non‐farmers living in rural areas, with dementia and cognitive impairment?
What strategies can help carers and farmers with dementia to manage the risks of living with dementia on the farm?
3. Methods
The Greater Western Human Research Ethics Committee approved the protocol (2024/ETH02683). Reporting was dictated by the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines [11].
Participants were recruited via various advertising means, including the University of Sydney and School of Rural Health website, Dementia Support Australia, JoinUs.org, The Orange Health Service, local clinical practices, community hubs, Murrumbidgee Primary Health Network, word of mouth and dementia carer Facebook pages. The study targeted carers of farmers with dementia; locations for print advertising and Facebook pages were selected based on this. Anyone over the age of 18 who stated they have at some stage been a carer for a farmer with dementia or cognitive impairment was eligible. Formal or professional carers (e.g., paid and contracted) were excluded as their purposes and connection to the person with dementia will be distinct from those in a voluntary and unpaid role. Purposeful sampling was used based on these criteria.
Participants were interviewed verbally via telephone during June and July 2025. Prior to being interviewed, participants were asked via email to complete an online eligibility screening and sign a consent form. A short pre‐interview questionnaire collected participants' demographics, including age, gender, geographic area, highest level of education, and carer duration. Relationships were clarified to ensure that carers were voluntary, and any payments received by carers were not in a professional capacity. No prior relationship existed between the participants and the interviewer.
Semi‐structured interviews were conducted by an MD Student (PG), who had been workshop‐trained in conducting guided interviews with a qualitative analysis approach. Questions asked focused on four dimensions: Positive aspects of living on a farm for people with dementia, barriers and risks on the farm, care differences between rural towns versus farms, and strategies for care to overcome these risks/barriers. The interview questions are outlined in Table 1 and were validated through consensus with the research team. The interviews were recorded using an audio recorder and transcribed by the interviewer (PG) into a text document. If participants wished to do so, they could view their transcripts and receive a final copy of the study. Data was analysed using grounded theory [12] for an iterative thematic analysis on NVivo version 15 by the interviewer (PG). Data collection continued until data saturation was reached. Before the final submission of the project, participants were sent a draft of the results section to allow feedback; however, there were no suggestions.
TABLE 1.
Research questions and their corresponding interview questions.
| Research question | INTERVIEW QUESTIONS |
|---|---|
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In preparing this manuscript, the leading author (PG) used ChatGPT to assist with improving readability, grammar, and language flow. The Introduction and Discussion sections were entered into ChatGPT with prompts limited to grammatical correction and enhancement of clarity, without altering the original meaning, core content, or references. No AI tools were used to generate new or original scholarly content. AI was not used to develop or generate content for any other sections of the manuscript, including the Methods, Results, Abstract, or data analysis. All substantive content, interpretation, and conclusions were developed solely by the authors. The authors reviewed and verified all outputs generated and take full responsibility for the content of the published work.
4. Results
There were 21 expressions of interest, and from these, seven volunteers signed the consent form. The reasons for exclusions were ineligibility due to living circumstances (n = 3) and loss of follow‐up (n = 11). Semi‐structured interviews of 15–25 min in duration, with an average length of 21 min (SD = 3 min), were conducted with seven carers of farmers with dementia. Their experience in caring for farmers with dementia ranged from three to nine years. A variety of relationships existed, with five participants being spouses and two being children of the PLWD. Three of the PLWD who were cared for were still living. At the time of interviewing, two of the participants were still living in the same residence as the PLWD. Their location included: New South Wales = 4, Western Australia = 2, and Queensland = 1. There were no follow‐up interviews with any participants. The participants' demographic information is shown in Table 2.
TABLE 2.
Demographic information of study participants.
| Characteristic | n (%) |
|---|---|
| Age (SD) | 63.3 (8.4) |
| Sex (%) | |
| Male | 2 (29) |
| Female | 5 (71) |
| Relationship to the farmer with dementia | |
| Child | 2 (29) |
| Partner | 5 (71) |
| State | |
| New South Wales | 4 (57) |
| Queensland | 1 (14) |
| Western Australia | 2 (29) |
| Highest Educational Degree | |
| None | 2 (29) |
| High School Certificate | 0 (0) |
| Diploma | 2 (29) |
| Bachelor's Degree | 3 (42) |
| Years caring for people with dementia n (SD) | 6.8 (4.1) |
| < 5 Years | 2 (29) |
| 5–10 Years | 4 (57) |
| 10 + Years | 1 (14) |
Five themes were found in terms of risks and barriers to care for farmers with dementia living on farms, including (1) Geographic isolation; (2) Physical hazards and farm responsibilities; (3) Interpersonal relationship conflict; (4) Inadequate government support; and (5) Lack of local healthcare resourcing. A sixth theme of the positive impact of the farm environment was also highlighted, indicating the value seen by some participants in continuing to live on the farm. These themes and their corresponding codes are collated in Table 3.
TABLE 3.
Themes and their corresponding codes.
| Theme | Codes |
|---|---|
| Geographical isolation | Distance to care |
| Paid carer travel | |
| Voluntary carer travel | |
| Physical hazards and farm responsibilities |
Misadventure Lack of risk perception Denial of abilities Farm responsibilities Carer Hazards |
| Interpersonal relationship conflict | Family Relationships |
| In‐town relationships | |
| Family Care | |
| Inadequate government support | Bureaucracy |
| Technology | |
|
Poor adaptability of support Education Policy |
|
| Lack of local healthcare resourcing | In‐town resourcing issues |
| Out of hours care | |
| Positive aspects of the farm environment |
Familiarity of environment Lifestyle Pace |
4.1. Geographical Isolation
Geographic isolation was frequently discussed as a major barrier to accessing care, and interestingly, participants saw it as less of a barrier when asked if this would still be an issue when living in rural towns. Several ideas were highlighted, including: (1) travel to receive care, (2) paid carer travel, and (3) voluntary carer travel. “You're in town, and you're waiting for a GP appointment, and there's suddenly a cancellation, and there is an availability, they're 5 min down the street, where a farmer may be 30 min out of town.”‐ Participant 1 (F, 53).
Professional carers were seen as being unable to make the travel to farms, due to distances and the quality of roads. “I can remember having a support worker who refused to come to the property, not for the distance, but the last 10k's of the journey were dirt. That is a council gazetted road, their response was their car doesn't go on dirt. Well, sorry, most farms have got a dirt driveway.” –Participant 1 (F, 53).
4.2. Physical Hazards and Farm Responsibilities
Farms were viewed as an environment with many hazards. “Everything, you've got to plan everything more ahead, but it's not just geography‐based, it's landscape‐based too.”– Participant 1 (F, 53).
A common risk perceived by carers was the physical hazards and dangers present on farms. PLWD were seen as having a poor grasp of the dangers present on farms, due to a lack of rationalisation of danger. “He just didn't perceive risks, and then as the disease progressed, he started losing balance, so he'd go to crawl up a ladder, he'd fall off” – Participant 4 (F, 67). Overconfidence and the belief that farmers could continue to perform farming practices were a physical hazard; “You're talking about them going out and doing things they've always wanted to do, which becomes a concern in itself” – Participant 3 (F, 60).
This was tied to farm responsibilities; often carers would continue with farm work, which caused issues when farmers with dementia required supervision: “I do long truck trips, but she couldn't stay at home on her own, I just buckled her up in the passenger seat […] she's just in Disneyland floating along with whatever went on.” – Participant 7 (M, 65).
One participant described a particularly dangerous incident, which led to moving off the farm into town, where many of these risks were not perceived:
“My husband went for a drive and went missing for 5 days and was found in the snowy mountains, thinking he was on our property, but he wasn't. He was on someone else's property that we never knew, and he was severely dehydrated and was starting to go into renal failure.” – Participant 1 (F, 53).
This highlights the relationship between these themes and how they can interact with each other to exacerbate individual issues.
4.3. Interpersonal Relationship Conflict
The impact of relationships was a theme mentioned by several participants, with the strain it placed on family members, especially carers: “It's put a strain on all of us. […] I am very much trying to have a life of my own, but I've got the pull of my own children with grandchildren expecting me to just drop everything and come with them. Then I've got a dad who thinks that I go to Bunnings every 5 min of the day to help him. So, it's very hard to balance all that out and to keep yourself in perspective with everybody wanting a piece of you, and then you add work on top of that, and it can be quite demanding.” – Participant 3 (F, 60).
“You've had a farm together, you've raised children together, you've had all that time together. Suddenly, that person becomes a stranger, but you have to continue looking after them. So really, the primary carer, in a lot of cases, it's the husband or wife that becomes the carer. Their life goes on hold. They don't have a life.” – Participant 4 (F, 67).
One participant mentioned relationships deepening in some positive aspects, despite a heavy strain: “I'm very attuned to what my dad‐ when he has his little what I call “dips”. I can tell when he's getting slightly aggressive, I can tell when he's having his hallucinations, and he goes off on tangents and I sort of‐ I can tell those. You develop a closeness, an awareness.” – Participant 3 (F, 60).
4.4. Inadequate Government Support
Governmental funding for individuals and the barriers to accessing governmental support were often criticised in interviews. Several dimensions of this were discussed, including the struggle of navigating a bureaucratic system, policy not accommodating the unique environment of farming, and technological limitations found in rural Australia.
The wait times to receive individual funding were discussed; in some cases, carers perceived it as essentially blocking care: “We needed a ramp to get up to the house. They could do a ramp, we could get them through the ACAT [Aged Care Assessment Team], but I think it was a 3 to 6 month wait, so my son actually ended up building one for me. That's what it was, he was able to do that within a week, whereas you would have been waiting months, by then my husband would have been in care, so it would have just been a waste of time and money.” – Participant 4 (F, 67). This further highlighted the family supports that were often used by participants in place of at‐home paid carers.
The timing was also a factor in accepting packages from the government, one participant stated, “the wait times for any funding are challenging. Additionally, to that you've only got so much time to when you get a letter for a package, you've only got so many days to respond to accept that package.” – Participant 1 (F, 53). Technology also prevented adequate reception of care packages from the government, with the poor infrastructure in rural areas being blamed “then they'll say we emailed you. Well, email doesn't work so well where we are, so you have got to go down to the end of the driveway to get the email fired up” – Participant 1 (F, 53).
4.5. Lack of Local Healthcare Resourcing
Despite participants often living near a local town, it was discussed that these healthcare providers often did not have the resources that were required for providing even basic care. This meant that travel to even farther locations was required:
The thing with rural towns is that we've only just recently got a chemist. We don't have a doctor here. It required me taking them, time out of my schedule to take them to doctors […] being close in a rural town is fine, but if you don't have the facilities to it then there's no point to it. Unfortunately, a lot of small rural towns are just that. […] they struggle to facilitate doctors, they struggle to facilitate lots of things. – Participant 3 (F, 60).
This highlights the issue of local healthcare resourcing affecting both persons residing on farms and in town in the rural setting. This often led to family being required to step in and assist with running the farm to free time for the primary carer, or act as a secondary carer themselves; “The daughter chose a job closer so she could come and visit on the weekends, which helps a lot.” – Participant 6 (F, 58).
4.6. The Positive Impact of the Farm Environment
A variety of responses were given when discussing positive aspects of caring for PLWD on farms. The most pertinent was the familiarity that farmers with dementia have with their home environment. The nature of the farm was discussed: “The amount of information that they are required to process on any given day can impact, and so the pace on a farm can soothe that journey.”—Participant 1 (F, 53). The familiarity of the environment was also a frequently discussed topic, with it being viewed as a positive for Participant 2: “If he has to go and get something out of the shed, even though I've put it back, but he knows where to get it. Also, he still drives a tractor. He does a lot of slashing in the summer – the paddocks, and he loves doing that cause he knows he can do it. He does the ride‐on mower. Now we have a very big garden, and he does that over summer and loves doing that.” – Participant 2 (F, 81).
One participant discussed the negative prospect of relocating and the necessity to stay on the farm for as long as they could: “My understanding with dementia is that they don't respond well with too much change in terms of where they're actually living and what have you, and don't settle so well. I guess to me that would reinforce the desirability of people ageing in place so long as it's safe and comfortable” – Participant 6 (M, 58).
It is worth noting that several of the participants did not feel satisfied in answering the question, indicative of the mixed feelings towards the balance of positives and negatives of the farm environment; “I found it very hard to find positive aspects.” – Participant 4 (F, 67).
5. Discussion
This study explored the risks and barriers to care of informal carers of farmers living on‐farm with dementia and cognitive impairment. Some of these findings highlight unique issues for those living on farms. For instance, the geographical isolation of farms in Australia limited access to care, making it more difficult for farmers with dementia to travel to seek care and to receive paid or voluntary care on‐farm. Carers reported that the process of government packages and financial support was inequitable due to barriers such as poor technology infrastructure in remote areas. Unique physical hazards and farm responsibilities were described as risks for PLWD that could prompt carers to relocate the person with dementia.
A scoping review on the experiences of dementia in farming communities reported that there is a lack of peer‐reviewed research in this population and that farming communities with dementia have a particular set of challenges in addition to those living in rural areas [13]. Their results also highlight the emotional and physical strain on the family, the lack of appropriate services and support, and the positive aspect of maintaining a sense of support on the farm [13]. Other results of the current study align with previous studies of dementia in rural communities, reporting that the needs of PLWD in rural Australia and their carers were not being met. For example, carers in regional Victoria reported limited access to services and support, especially to navigate the system [10]. A systematic review found that rural persons with dementia had lower access to care and lower use of home‐care services [14], which aligns with the experiences reported by our study population on their geographic isolation. In contrast, a scoping review reported positive aspects of people living with dementia and carers living in rural areas, which described participants experiencing supportive rural communities [15].
Interestingly, when compared to a previous study of rural Australian clinicians' opinions on risks and barriers to care of PLWD on farms [7], the carers in our study discussed personal relationships more. Further, it seemed a common sentiment in our study population that to act as a primary carer to a farmer with dementia, the carer themselves had to be cared for. Relationships appeared to play a more central role in discussions. This follows a previous study's finding that isolation can result from carers living under the same roof as people with dementia, as was often the case with participants [16]. In the current study, while the carer‐farmer relationship led to a deeper understanding of the behaviour and patterns of the farmer with dementia, it did not appear to mitigate the strain on the relationship. This relationship strain was seen as a danger to both the carer and the farmer with dementia themselves.
Travel times are a barrier to visiting healthcare providers, meaning that no care could take place off farm, as the lighter support packages did not factor in this time. Often, packages could not be accessed due to wait times for services provided. A lack of care staff in the local community meant that the financial support provided for these services could not be utilised, regardless of the funds available.
The difference in the care provided in rural and farm areas was a frequently discussed issue in these interviews. This is tied to the poor resourcing seen in rural towns and on farms [17], with the same pool of health practitioners caring for both. The lack of certain specialist care in rural and remote settings is a compounding issue that obliges PLWD on the farm to travel longer distances.
The positive impact of living on farms indicated the need to evaluate the utility of moving to a more connected rural town or urban area to seek better care. On one hand, the environment is seen as a detriment to care, but on the other, some participants reported that due to the familiarity of the location to the farmers with dementia, they were highly functional and able to manage living well with dementia. This was the inverse when they would go to town, where farmers with dementia needed extra support. Research has shown that familiarity with the environment can be therapeutic for people with dementia, regardless of rural or urban background [18]. It makes sense that a carer would wish to maintain this good environment for as long as possible, as the conclusion is that uprooting and moving to an unfamiliar location would lead to more issues than it would solve. Thus, the carers' conclusion that the issues faced on the farm would have to be severe to warrant moving makes sense. This positive view of the farm environment highlights a need for policy change with tailored approaches to the provision of care in those remote areas.
A large barrier to conducting this project was advertising and recruitment. Recruitment in future projects should account for the technological limitations faced on farms, which is a recognised barrier in this population [19, 20]. In‐person recruiting through support groups and community organisations (e.g., rotary clubs) may prove viable in circumventing this limitation. While this study is preliminary, some bias may be present in the small sample size of the participants. This could lead to participants displaying similar traits, as those who would typically respond would be from similar social circles. Future research should focus on the differences between less remote and more remote farm populations. In addressing equity in support for these environments, this differentiation is important.
6. Conclusion
Carers of farmers with dementia highlighted several risks and barriers to care. These often interact in such a way as to exacerbate each other, as is the case with distance to care, local resourcing of health care providers, and unequal support from the government. Often, farmers will face physical hazards, which may be misperceived or viewed with distorted risk. Relationships were a key focus of participants' experience, with the struggle of caring for persons with dementia having an impact on care for the carers' selves. Positive aspects of farm life were also highlighted, with the soothing nature of the natural environment mentioned, and the value of keeping PLWD in a familiar environment despite the risks being noteworthy.
Author Contributions
Patrick Golemo: data curation, formal analysis, investigation, visualization, project administration, writing – original draft, writing – review and editing. Carlos Mesa‐Castrillon: conceptualization, methodology, investigation, validation, formal analysis, supervision, project administration, writing – review and editing, writing – original draft. Kerri‐Lynn Peachey: conceptualization, methodology, supervision, project administration, writing – original draft, writing – review and editing, validation. Tony Lower: conceptualization, methodology, investigation, formal analysis, validation, supervision, project administration, writing – review and editing, writing – original draft.
Funding
The authors declare no specific funding was received from any bodies in the public, commercial or not‐for‐profit sectors to carry out the work described in this article.
Ethics Statement
Ethics approval to conduct the study was granted by the Greater Western Human Research Ethics Committee 2024/ETH02683.
Conflicts of Interest
The authors declare no conflicts of interest.
Acknowledgements
Dr Emily Saurman and Dr Brie Turner for guiding the analysis of the data and providing feedback. Open access publishing facilitated by The University of Sydney, as part of the Wiley ‐ The University of Sydney agreement via the Council of Australasian University Librarians.
Data Availability Statement
Data sharing not applicable to this article as no datasets were generated or analysed during the current study.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Data sharing not applicable to this article as no datasets were generated or analysed during the current study.