The Experiences of People with Dementia and Their Caregivers in Dementia Diagnosis

Abstract

Background:

People can live well with dementia if they are diagnosed early and receive early interventions and appropriate dementia management and care. However, dementia is currently under-detected and under-diagnosed. The diagnosis rate is around 50% only in higher-income countries and 5–10% only in low- and middle-income countries. Studies on consumers’ experiences in engaging in dementia diagnosis in a socio-cultural context are much needed in order to generate research evidence to inform person-centered dementia care and services.

Objective:

The aim of the study was to understand the experiences of people with dementia and their caregivers in engaging in dementia diagnosis.

Methods:

An interpretative study design informed by Gadamer’s hermeneutic principles was applied to the present study to achieve the aim of the study. The study was strengthened by applying a social ecological framework to the study design. In total, 23 participants contributed to the interviews or focus group. Thematic analysis was applied to data analysis.

Results:

Four themes were determined from data and described as: capabilities to detect the memory loss in an early stage, perceptions and beliefs of dementia in the community, different journeys toward the diagnosis and expectations of a smooth journey for others. These findings illuminate a social ecological perspective of improving early detection and timely diagnosis of dementia in the community settings.

Conclusion:

The findings of this study have implications for policy, resource, and practice development. Consumers expect that government subsidized dementia care services in primary care and specialist care settings are needed in order to enable consumer-driven timely diagnosis and dementia management in home care settings.

Keywords

Alzheimer’s disease dementia timely diagnosis

INTRODUCTION

It was estimated that dementia affected 46.8 million people globally and around 20% of this population lived in China in 2015 [1]. People can live well with dementia if they are diagnosed early and receive early interventions [2 –4]. Timely diagnosis of dementia allows the persons with dementia to receive social care and health care in a timely manner. It also allows management and prevention of symptoms and complications associated with dementia and improve quality of life for both the persons with dementia and their caregivers [5, 6]. However, dementia is currently under-detected and under-diagnosed [4]; the diagnosis rate is around only 50% in higher-income countries [3, 7]. The average length of time for family to notice dementia symptoms is about two years and for people to be diagnosed with dementia since the onset of dementia symptoms is about three years [5, 8]. In low- and middle-income countries (LMICs) including China, only 5–10% of population living with dementia are diagnosed [2 –4]. One of the dementia care targets set in the World Health Organization (WHO) Global Action Plan is to achieve a 50% diagnosis rate in a timely manner by 2025 [9]. Although numerous factors contribute to the timing of dementia diagnosis, the persons with dementia and their caregivers play a crucial role in achieving a timely diagnosis [10 –12]. Socio-cultural factors have a strong influence on their help-seeking behaviors [13, 14]. Studies on their experiences in engaging in dementia diagnosis in a socio-cultural context are much needed in order to generate research evidence to inform person-centered dementia care and services.

Research shows that the person with dementia and their caregivers are capable of recognizing memory problems and are the first source of information to report the problems [5, 13]. The early signs and symptoms of dementia noticed by both family members and the persons with memory problems are most predictive of dementia diagnosis [4, 10]. However, studies on barriers to timely diagnosis also reveal that help-seeking behaviors for memory problems are strongly influenced by self-appraisal of the problems mediated by socio-cultural factors [15, 16]. Memory problems are misinterpreted as aging-related memory decline and are thought to be not treatable. This kind of misinterpretation exists widely in populations with low dementia awareness and the lack of health and social care for this population in a society [2, 4]. Older age, low education levels, language barriers, low health literacy levels, living in isolation, and high levels of dependency on others are reported as risk factors of misinterpreting memory problems [17, 18]. On the contrary, relatively younger age, female, married, having more than nine years of full-time education, and showing more severe dementia symptoms are more likely to be associated with formal diagnosis of dementia [17]. Up to 88% of people with dementia in community settings exhibit behavioral and psychological symptoms of dementia (BPSD) [19, 20]. These symptoms are usually attributed to mental health problems in communities with low dementia awareness and dementia literacy [15, 21]. BPSD are largely underreported due to perceived stigma in the community [22, 23]. Untreated and unmanaged BPSD are associated with complications such as falls and injuries, higher levels of caregiver burden, and lower levels of quality of life for both the person with dementia and their caregivers [2, 4].

Timely diagnosis and post-diagnosis support can only be achieved through collaboration of general practitioners (GPs) in primary care facilities and specialists in tertiary care facilities [5, 24]. Nurses in these care settings also play a crucial role in comprehensive assessment, dementia education, and post-diagnosis support [4, 24]. The journey of achieving timely-diagnosis and management of dementia usually require knowledge and skills for the persons with memory problems and their caregivers to explore and negotiate the healthcare system. Under-developed dementia care in primary care settings, lack of memory clinics in tertiary hospitals, and lack of collaboration between GPs and specialists are barriers for timely diagnosis in a society. In China and other LMICs, the lack of resources and support for cognitive screening in primary care, the lack of the collaboration between GPs and specialists in dementia diagnosis, and post-diagnosis management are reported as barriers to dementia diagnosis [4, 12].

Studies across the globe have demonstrated rigorous evidence that timely diagnosis, post-diagnosis support, and dementia management are achievable through comprehensive and multi-sectoral interventions that engage the person with dementia, their family, the community, and the development of health care and social care [2 , 5]. A social ecological theory aiming to improve care for populations in need developed by Bronfenbrenner has been applied to the care of people living with dementia [25 –27]. This theoretical perspective values the experiences of the persons with dementia and their caregivers in seeking help, the social environment they live in, social networks they engage in, and the health and social care systems that either facilitate or impede their actions in trying to achieve timely diagnosis [25, 26]. This theoretical perspective is particularly suitable for LMICs where the undesirable outcomes of timely diagnosis are associated with unestablished social and health care systems, the prevalence of misinterpretation of dementia, and stigma attached to dementia in community settings [2, 4]. This theoretical perspective opens a new paradigm to illuminate new approaches to improve dementia diagnosis and post-diagnosis support for people with dementia and their caregivers from consumers’ view.

METHODS

Study design

The aim of the study was to understand the experiences of people with dementia and their caregivers in engaging in dementia diagnosis. An interpretative study design informed by Gadamer’s hermeneutic principles was applied to achieve the aim of the study [28]. This research design allowed the researchers to interpret participants’ help-seeking actions in a socio-cultural context and enrich an understanding of socially and culturally constructed factors enabling or inhibiting participants’ actions. This methodology echoed with the social ecological perspective of improving timely diagnosis. The interpretation process also required researchers to bring their prior knowledge in dementia care to gain a new understanding in the study area.

Ethical considerations

The Research Ethics Committee of Daping Hospital of Third Military Medical University approved the study (Project No. Yiyabunshen201503). Participants were contacted by letters that invited them to participate in either a focus group discussion or an interview voluntarily. The letter was distributed to potential participants from a memory clinic of the University teaching hospital where potential participants were referred to the memory clinic. Participants who met the selection criteria and were willing to participate in a focus group discussion or an interview were asked to contact the researcher by phone or return a response form via a pre-paid, pre-addressed envelope. A researcher then contacted the participant by phone to arrange a time and venue for their participation in either a focus group discussion or interview. People with mild dementia had capacity to give informed consent. Caregivers in the study were adults over 18 years older and had capacity to give informed consent. Participants were reassured that confidentiality was maintained. Prior to the focus groups or interviews, written informed consents were obtained from those participants.

Setting and participants

Participants were recruited from the memory clinic of Daping Hospital of the Third Military Medical University. Purposive sampling method was applied to the study. Selection criteria include: (1) people who were diagnosed with dementia and (2) caregivers who had cared for the person with dementia for at least 6 months and co-resided in the same house. Among the 58 people with dementia and their caregivers who received invitation to the study, 23 of them responded to the researcher and participated in the study.

Data collection

Focus group discussions were used to collect data guided by semi-structured questions (see Table 1). These questions were developed based on a comprehensive literature review and the social ecological perspective of factors affecting people’ actions to engage in dementia diagnosis [25 –27]. A focus group provides opportunities for participants to share their experience in dementia diagnosis. This method can generate group synergy to enrich an understanding of why people engage or do not engage in dementia diagnosis through a group reflection. Face-to-face in-depth interviews were also used to accommodate these who were unable to attend the focus groups at the scheduled time, but were willing to be interviewed. Data collection was conducted over a three-month period in 2016 between March and May. In total, one focus group with 14 participants and nine one-on-one interviews were conducted. Two researchers attended the focus group with one acting as a facilitator and the other as an observer. The observer recorded participants’ non-verbal communication in order to assist data analysis. The observer also collected participants’ demographics prior to focus group discussion. The focus group discussions were 120 minutes long while the interviews lasted from 30 to 45 minutes. The focus group discussions and interviews were audio-recorded and transcribed verbatim for the data analysis.

Table 1

Interview guides

1. Could you please briefly introduce yourself and whether you have a regular primary care (GP) practice that you attend?

2. Do you have knowledge of prevention, cognitive screening, treatment and care of older people with dementia? If yes, could you please

describe your knowledge in these areas?

3. Older person with dementia: When did you first suspect that you might have dementia?

4. What were the symptoms that you were having that led you to believe you might be suffering from dementia?

5. Caregiver of people with dementia: When did you first suspect (person) might have dementia?

6. Caregiver with dementia: What were the symptoms they displayed that first led you to think this way?

7. When either of you suspected, there might be something wrong, what did you first think about doing to confirm your suspicions?

8. Did you visit your doctors and discuss your concerns? Did you visit together or separately?

9. When you visited your doctors, what was the advice that you were given?

10. When you visit your doctors, do you have regular engagement with the nurse?

11. What do you think helps to identify when a person may be suffering from dementia?

12. What do you think prevents a timely diagnosis of dementia?

13. What information and support have you received from doctors and nurse when you received the diagnosis of dementia? Are the

information or support useful for you? If not what are your suggestions for doctors and nurses?

Data analysis

Thematic analysis through coding, grouping codes, summarizing codes into categories, and identifying themes was applied to data analysis [29]. The first author read each transcript to gain insight into the participant’s views. Meaningful words and sentences on each transcript were coded. Codes identified in each transcript were summarized into group codes based on similarities of meaning. The grouped codes were reviewed and summarized as categories by the project team. The social ecological theory informed the discussions and consensus on themes and sub-themes.

Study rigor was achieved by presenting a summary of main points from focus group discussions to participants and inviting participants to revise these points. Study rigor was also emphasized by team members’ cross-checking of codes and group codes and by using sufficient excerpts from the participants to support the findings.

RESULTS

In total, 23 participants contributed to the interviews or focus group in the present study. Nine of them attended the focus group and 14 of them were interviewed. Of those, 20 were caregivers with 17 of them being primary caregivers, two being second caregivers, and one being third caregiver. Three persons with dementia at an early stage were able to share their experiences in dementia diagnosis participated in interviews. The majority of caregivers were female, married, and had a mean age of 58 years old (see Table 2). The demographics of the persons with dementia in this study were summarized in Table 3. The Global Deterioration Stages was used to classify the stages of dementia [30].

Table 2

Demographic characteristics of caregivers (n = 20)

Demographics	Observations	Percentage
		or range
Age: Mean (SD)	58.0 (15.1)	31–80
Gender
Male	4	20
Female	16	80
Marriage
Married	19	95
Unmarried	1	5
Education
Middle school and below	6	31.6
Undergraduate	12	63.1
Master and above	1	5.3
Relationship with the care recipient
Spouse	9	45
Child	7	35
Paid Caregiver	4	20

Code used in the excerpts: IC, interview caregiver; FGC, Focus group caregivers.

Table 3

Demographic characteristics of the persons with dementia (n = 18)

Demographics	Observations	Percentage
		or range
Age: Mean (SD)	84.0 (7.81)	70–95
Gender
Male	08	44.4
Female	10	55.6
Marriage
Married	14	77.8
Widowed	04	22.2
Education
Middle school and below	13	72.2
Undergraduate	05	27.8
Severity
Mild	05	27.8
Moderate	08	44.4
Severe	05	27.8
Years living with memory problem	5.0 (3.3)	0.5–10
prior to diagnosis: Mean (SD)

Code used in the excerpts: IPWD, interview the person with dementia. Mild, Global Deterioration Stages 4-5; Moderate, Global Deterioration Stages 6; Severe, Global Deterioration Stages 6-7.

Four themes were determined from data: (1) capabilities to detect the memory loss in an early stage; (2) perceptions and beliefs of dementia in the community; (3) different journeys toward the diagnosis; and (4) expectations of a smooth journey for others. These findings illuminated a social ecological perspective of improving early detection and timely diagnosis of dementia in the community settings.

Capabilities to detect the memory loss in an early stage

Caregivers described that they were capable of detecting the early signs of memory problems based on their daily interactions with the persons they cared for and their immediate role in assisting the person to manage the problems. Their knowledge about the early signs of memory loss were insightful. Declined ability to find the way home or getting lost in a neighborhood were constantly mentioned by participants: “She could not find her way to go to the places in the neighborhood she was familiar with before the memory problem (IC2)”. This kind of experience was also mentioned by another caregiver: “She could not recognize people she knew well and could not find her way home. She got lost (IC3)”.

Declined ability to perform activities they were skillful before was also frequently described by family members as caregivers discussed: “She turned on the gas stove, forgot what to do and went to study room, leaving the gas stove on (FGC3)”. “She put the rice into the electrical cooker, but forgot to plug on. When the family sat for dinner, we found the rice was not cooked. (IC4)”. “He forgot to turn off light, forgot the location where the thing was placed. He forgot to flush the toilet and he forgot to turn off the tap, resulting in water running for a whole night (IC1)”.

The early detection of signs of dementia by family members enabled them to take further actions for seeking help from others. However, the outcomes regarding dementia diagnosis were quite different as discussed in the following themes.

Perceptions and beliefs of dementia in the community

Most participants learned about memory problems through word of mouth in the community. Although they were capable of detecting the memory problems at an early stage, their help-seeking behaviors were strongly influence by perceptions and beliefs of dementia in the community. Most participants sought advice through their social networks, not health professionals, as a caregiver said: “I asked the people around us about my husband’s memory problem. They said the elderly would have bad memory loss due to growing older (IC1)”.

Most participants discussed that the untreatable nature of the disease discouraged them from seeking help from health professionals as a caregiver described: “He thinks the disease can’t be cured any way and he lost his hope for treatment. He did not want to get further medical examination (IC3)”. The untreatable nature of the disease also contributed to psychological distress they experienced and they had a fear to confront the diagnosis as the person with early stage of dementia said: “A lot of people were not willing to take part in diagnosis because they didn’t want to bear the psychological stress. The stress is like the cancer diagnosis, a disease that is not curable (IPWD1)”.

The source of stress also came from negative attitudes toward dementia in the community, as the focus group discussed: “People who understand it [dementia] will show sympathy. But for those who do not understand it, they will talk about your family in the neighborhood in an unfriendly way. So my mother always denies that she has dementia [the caregiver cried in the focus group] (FGC5)”.

Even the persons who had some knowledge about dementia usually denied they had the problem based on their understanding who might or might not develop dementia, as a person with dementia stated: “When I had memory problems, I believed it was nothing to do with dementia. How could I develop this problem? I could read and I understood the meaning of every word appeared on the newspaper. I am not mad. I thought I just became forgetful (IPWD2)”.

Different journeys toward the diagnosis

Participants’ journeys toward dementia diagnosis varied ranging from achieving early diagnosis in a 6-month period to delayed diagnosis that was up to a 10-year period. A daughter of a person with dementia who achieved a timely diagnosis described her mother’s experience: “She forgot what she said a moment ago. I suspect that she had dementia and I arranged a medical appointment for her at Daping hospital [a tertiary hospital with a memory clinic]. She was diagnosed with vascular dementia soon and received treatment (FGC2)”. The characteristics of achieving early diagnosis in this case include the caregiver’s knowledge about dementia, seeking help from health professionals, and available and accessible dementia diagnosis services.

In another example, the caregiver’s proactive actions in health education enabled the timely diagnosis, as she stated: “I found he was very forgetful and could not recognize his colleagues who worked with him life time.… I usually read books and newspapers about health and I knew this was not normal. I arranged medical examination for him at Daping hospital (IC5).” In this case, the caregiver was capable of identifying resources and engaging in self-learning of dementia. However, most people with dementia in this study were diagnosed very late (average 5 years) and were diagnosed at a crisis point when they were admitted to hospitals due to severe BPSD, as a caregiver described: “He always felt that there were strangers hidden in our house day and night. The symptom was severe at night. He always woke up at night and searched for the strangers in every corner of the house (IC8)” Participants also mentioned that the persons with dementia were diagnosed due to dementia related complications, as a participant stated: “My mother had falls several times in the house and outside of the house. Eventually she had a hip fracture and was no longer to walk again since (IC9)”.

Financial concern was mentioned as a major issue for participants to engage in dementia diagnosis, as a person with dementia said: “Generally medical examination cost a lot of money and many of us [retirees] could not afford.… we would like to participate in dementia diagnosis if it is for free (IPWD3)”. These high medical costs might reflect that none of the participants in the study approached GPs, but specialists as their first point of contact for diagnosis. The underdeveloped dementia care and services in primary care settings may contribute to the unavailability of affordable dementia diagnosis.

Expectations of a smooth journey for others

Most participants who experienced later diagnosis reflected on their journeys toward dementia diagnosis and strongly suggested positive changes to enable others to avoid their stressful journey and have better quality of life, as a caregiver said: “If dementia was diagnosed in the early stage, he would experience these severe symptoms [hallucination and abusive behaviors in the family] and I would have had such stressful burdensome times to care for him (IC6)”.

In this study, none of diagnosed cases were referred by GPs from primary care settings. Availability of dementia screening in the community was constantly mentioned by participants as a convenient and cost-effective way for them to have services near their homes. However, the current services have not met their expectations, as a person with dementia described: “The Daping Community Health Service Centre has no staff and resources for dementia screening. I know this Centre very well (IPWD2)”. Participants suggested that they would like to use cognitive screening and dementia services from the Community Health Service Centers that were close to their homes if the Centers could provide high-quality services, as the focus group discussed: “Screening for dementia may be conducted when older people attend the annual medical examination in the Community Health Service Centre for blood pressure and blood glucose. This way may be convenient and acceptable by caregivers who have time pressure to attend the examination. If it is conducted separately, people might not have a time or be willing to do (FGC8).”

Participants were aware that the Community Health Service Centers had limited numbers of doctors and nurses. Strategies they suggested to reduce the screening workload included: “People who are capable of undertaking self-screening should encourage them to do. Family caregivers who are able to undertake the screening can do at home if the doctors and nurses distribute the forms to them and give them instructions. The community engagement of dementia screening would enhance dementia knowledge and actions to achieve timely diagnosis in the community (FGC4)”.

Participants also suggested that flexible and user-friendly screening methods for dementia were much needed in order to engage people in dementia diagnosis: “I think people would prefer simplified screening forms, rather than those that are very complex and lengthy. I remember on the admission day when my father was hospitalized, the nurse brought some forms and asked us to fill in. It was a six-page form. First, my father was very reluctant to participate in and was very impatient when working with the forms (FGC8)”.

Promoting dementia knowledge, benefits of timely diagnosis and the way to achieve timely diagnosis were also suggested: “Little information is available for the public to know more about dementia. We don’t know if there is a place to see a doctor if we have memory problems (IPC3)”. Public campaign in dementia was another strategy to engage people with memory problem in help-seeking from health professionals, as the focus group discussed: “Most of the residents in the community have misunderstanding of dementia, little knowledge about the symptom, progress and the consequences of the disease. Therefore, regular public campaigns of dementia are ways to educate the public and raise awareness of dementia (FGC5)”.

DISCUSSION

Our study adds a new understanding to the international community regarding consumers’ engagement in dementia diagnosis in a socio-cultural context using an interpretive study design. The ability to detect early signs and symptoms of dementia by the persons with dementia and their caregivers further supports the suggestion that timely diagnosis of dementia is achievable and can be driven by consumers. The different journeys toward dementia diagnosis and the beliefs and perceptions of dementia underpinning these journeys provided evidence to inform dementia education programs for consumers. The lack of resources and supporting mechanisms in dementia diagnosis and post-diagnosis support identified in the present study have implications for policy, resource and practice development.

Facilitating consumer-driven timely diagnosis has been advocated globally [4, 31]. Our findings reveal that this model of dementia care can be applied to the Chinese socio-cultural context, but should be supported by well-designed dementia education for consumers. Promoting this model is also important considering the reported ambivalent and therapeutic nihilism toward dementia diagnosis and management among health professionals in developed countries [5, 13]. Our findings indicate that achieving timely diagnosis is possible if people with memory problems are knowledgeable about dementia and are empowered to take action themselves to seek help from health professionals for diagnosis. Our findings support previous studies that the public’s awareness of dementia is low and misinterpretation of dementia symptoms exist and contribute to undiagnosed dementia [25, 32]. In a society that espouses filial piety and collectivist cultural values like China, older people are typically cared for by family members [21 , 34]. Educational interventions for consumers should include family as a unit to enable a journey together as a family. Educational interventions through the Alzheimer’s Association and other consumer groups have been proven as effective to raise dementia awareness and facilitate timely diagnosis [2, 4]. However, free education resources and consumer-centered interactive programs are still scarce in many LMICs including China.

Our findings indicate that the lack of dementia care and services in primary care are barriers to achieve timely diagnosis and post-diagnosis dementia management. In the present study, none of participants had contacted GPs for memory problems in the community, but valued this approach as a convenient and cost-saving way. The finding supports a previous public survey study in Germany that almost two-thirds respondents would like their GPs as the first source of professionals to help them for memory problem [35]. It is widely reported that GP clinics should be the first contact point for persons to seek help for memory problem and the primary care approach to chronic disease management is most cost-effective [4, 5]. Establishing memory clinical in GP clinics has been proven as an effective strategy to improve timely diagnosis in Canada [36]. However, the number of memory clinics is viewed as insufficient even in high-income countries and the situation is much worse in LMICs [4, 5]. For example, the ratio of Specialist Memory Clinics to the person with dementia in China and in Australia was 1 : 48,000 and 1 : 2,608 respectively [4, 37]. Government initiated dementia strategies and action plan need to consider the resource and workforce development in memory clinics in order to meet consumers’ expectations of dementia diagnosis.

Our findings also reveal that the lack of dementia care and services contributes to the perceptions that dementia is not treatable and therefore not worthy of being engaged in dementia diagnosis. None of the participants in the study engaged in the use of dementia care services. Dementia care in China is largely based on a bio-medical model with little social care such as respite care, carer support groups, dementia education programs for caregivers, community dementia care, and Dementia Behavior Management Advisory Service [34, 38]. Research evidence has demonstrated that post-diagnosis support and early intervention for the person with dementia has much more psychosocial and economic benefits including prevention of dementia related complications such as falls, injuries, infections, BPSD and hospitalization due to these complications, delaying nursing home care, reducing caregiver burden, and improving quality of life for both the persons with dementia and caregivers [3, 6]. A social ecological perspective to policy, resource, and practice development will enable a holistic approach to meet the care needs of the persons with dementia and their caregivers. Establish consumer advocacy groups at different local levels will ensure the care and services meet consumers’ expectations.

While the present study achieved an in-depth understanding of consumers’ engagement in dementia diagnosis, it was based on a qualitative research design. Therefore, findings cannot be generalized, but can be transferred in similar socio-cultural context. Moreover, only three persons with early stage of dementia participated in the interview. This group’s perspectives of dementia diagnosis might not be fully understood, suggesting that further studies need to include more participants from this key group to gain more insightful understandings of their needs and the approaches to meet their needs regarding timely diagnosis and post-diagnosis support. Participants in the study were self-selected. Findings might not represent those who chose not to participate in the study.

Conclusion

This study explored the unique experiences and perceptions of the persons with dementia and their caregivers in engaging in dementia diagnosis using an interpretive research design underpinned by a social ecological framework. Our findings reinforce that the lack of dementia knowledge, the misunderstanding of dementia, and dementia stigma have a negative impact on participants to engage in dementia diagnosis. Undiagnosed dementia has many negative social, healthcare, and economic consequences. Government initiated and subsidized dementia care and services that focus on improving home care, support in the community, and creating dementia-friendly society are much needed in LMICs. China shares a large proportion of population living with dementia. Understanding consumers’ experiences in engaging in dementia diagnosis is much needed in order to facilitate consumer-directed policies and practice development. The findings of this study challenge policy makers and service providers to realize consumers’ expectations of a dementia-friendly society starting from a smooth journal to dementia diagnosis and post-diagnosis support. Overcoming barriers as identified in the present study and other similar studies requires collective efforts from all stakeholders including the government, community organizations, healthcare sectors, and society care sectors.

The findings of this study have implications for policy, resource, and practice development. First, as suggested by consumers, government subsidized dementia care services in primary care and specialist care settings are needed in order to enable consumer-driven timely diagnosis and dementia management in home care settings. Second, establishing memory clinics in primary care and the collaboration between GPs, community nurses, and specialists across primary care and tertiary care settings are imperative considered the cost is a concern by the consumers and the lack of collaboration between these care settings. Third, offering free dementia education resources and programs to the public through the Alzheimer’s Association at a local level should be view as effective strategies to equip consumers with knowledge and skills to achieve timely diagnosis and dementia care.

Footnotes

ACKNOWLEDGMENTS

The authors would like to thank participants who contributed to this study. The study was supported by Co-funded research grants from the Third Military Medical University in China and Flinders University in Australia. The project was also funded by Chongqing Social Science Program Grant (No. 2015YBSH142).

Authors’ disclosures available online ().

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