Perspectives of Singaporean Chinese patients with mild dementia and their family caregivers towards end-of-life care: Results from a qualitative study

Abstract

Background

Currently, there is little understanding of how patients with dementia and their caregivers view end-of-life (EOL) care. We thus aimed to study and understand the perception of EOL care by patients with mild dementia and their family caregivers.

Methods

We conducted qualitative in-depth interviews with 25 patients with mild dementia and their family caregivers belonging to Chinese ethnicity in Singapore. Patients’ and family caregivers’ understanding of illness, patients’ preferences for EOL care and caregiver concerns for the patients were discussed. Thematic analysis was conducted on the transcribed results of the interviews.

Results

We identified three main themes of person-centred EOL care: planning for cognitive decline and death, supporting patients to die peacefully at home, and supporting family caregivers to cope with patient’s condition. Most patients wanted to die peacefully and be cared for at their home. However, they were reluctant to initiate discussions regarding their future health care and seemed to be in denial that they may decline cognitively in future. Caregiver burden was noticeable for all family caregivers interviewed.

Conclusion

Results highlight three important components that would enhance the delivery of patient-centred EOL care in patients with mild dementia. Strategies based on these components can enable family caregivers and health care providers to plan for and provide patient-centred EOL care concordant with patients’ wishes.

Keywords

Mild dementia patients family caregivers perspectives end of life care

Introduction

Dementia is a progressive, incurable and terminal condition which currently affects over 55 million people and continues to increase in prevalence worldwide.¹ This has created an urgent need to provide good quality patient-centred end-of-life (EOL) care to those with dementia. Literature however shows that patients with dementia at the EOL often receive poor and aggressive care, and lack access to palliative care services.^{2, 3} A key challenge to providing quality EOL care to patients with dementia is their decreasing ability to express their preferences for care.⁴ Studies suggest that caregivers of patients with dementia have limited knowledge of patients’ care preferences and often opt for aggressive EOL treatments for patients that may not be concordant with patients’ own preferences.⁵

While patients in the later stages of dementia lose their insight and decision making ability, it is well recognized that those in the early stages of dementia are still able to provide valuable insights and reliable responses regarding their preferences for care as well as make health care decisions.^6–8 This provides a valuable window of opportunity for patients to state their care preferences so as to facilitate Advance Care Planning (ACP). As EOL care is part of ACP, early ACP conversations can help bridge the gap between patients’ preferences for care and caregivers’ perceptions of patients’ preferences such that, ultimately, EOL care is delivered concordant with patients’ preferences.^{9, 10}

Currently, most research conceptualizing the components of patient-centred EOL care has been conducted in patients with cancer or organ failure.^{2, 11} Hitherto, there is less literature examining the perspectives of community-dwelling patients with mild dementia and their caregivers in providing such EOL care.^{5, 12–14} We thus aimed to assess key components of patient-centred EOL care from the perspectives of patients with mild dementia together with that of their family caregivers (FCGs). Our results will help health care providers and administrators to recognize EOL care preferences of patients with mild dementia as well as the need for delivering patient-centred EOL care to this group of patients.

Methods

Setting

The study was conducted among Singaporean Chinese. Singapore is a South-East Asian country with a rapidly aging, predominantly Chinese (74.3%) population.¹⁵ In 2020, English was the language most frequently spoken at home (48.3%) among the resident population aged five and overwhile Mandarin (29.9%) and dialect (8.7%) speaking households formed the next biggest group.¹⁵ The prevalence of dementia in Singapore among 65 years and older is reported to be 10% and expected to rapidly increase in the coming years.¹⁶

Design and Participants

Potential patients were screened from the list of outpatients attending the Department of Geriatric Medicine at a major public hospital in Singapore. Inclusion criteria was the diagnosis of mild dementia based on a Clinical Dementia Rating Global Score (CDR-Global) 0.5 to 1 and/or Global Deterioration Scale (Reisberg) for primary degenerative dementia Stage 4. Only community dwelling patients were recruited. Study subjects were also assessed by a neuropsychologist or a geriatrician to have insight and decision making mental capacity. FCGs were 21 years and above. Patients and their FCGs gave their written informed consent before each interview.

We conducted separate qualitative in-depth interviews with patients with mild dementia and their primary FCGs. We chose qualitative in-depth interviews as the method of data collection to support expression of subjective experiences of dementia patients. This form of qualitative research aided discussion of complex issues and at the same time, provided some form of flexibility for the patient to lead the interaction. They could also be conducted in the comfort of the patients’ homes.¹⁷ For those who could not speak English, the interviews were conducted in their mother tongue or dialect. This was an important consideration: by allowing them to speak in their mother tongue or dialect, the authenticity of their verbal expressions was preserved.^18,19

A pair of trained interviewers (AP and SH) conducted the interviews. One was conversant with local dialects and interviewed the patients while the other interviewed the FCG at the same time in a different room. The interviewers used a guide developed by the investigating team to conduct the interviews which were recorded and transcribed. The Institutional Review Board at SingHealth approved the study.

Data Collection

Following the initial introduction of the interviewers, patients and caregivers were asked what they understood about their illness and how they believed the illness was likely to progress.

Patients were asked if they had ever discussed with their family the type of treatment and care they would like to receive at EOL. They were encouraged to talk about their discussions (if any) with their family and their feelings regarding such discussions. For those who had no previous discussions with their family regarding EOL care, their reasons for not doing so were examined. EOL care choices including type and place of care as well as choice of decision maker were discussed. Patients were also asked whether there were any financial considerations in relation to planning for their future EOL care.

Each FCG was asked about his/her concerns regarding the care of the patient and if he/she had any opportunity to discuss with the patient about the type of EOL care that the patient would want to receive. FCGs were encouraged to talk about how they planned to care for the patients in the future when their loved ones were no longer able to take care of themselves. Choice of resuscitation including artificial ventilation or palliative/comfort care at EOL were also discussed.

Data Analysis

In-depth interviews were transcribed verbatim and translated by native language speakers through a specialized external vendor who was not involved in the study. We used thematic analysis to answer our research question.^20,21 As this form of analysis was not dependant on any theoretical framework, it allowed for flexibility during analysis. Data immersion and familiarity enabled the investigators to generate codes, review and define the themes. A research coder trained by CM coded all the interviews. Codes were inductive in nature. We collated the final code list under latent themes. DS and CM reviewed and refined themes. We used NVivo for coding and collation of themes.

Results

Between January and May 2015, we approached 37 eligible patient-caregiver dyads for the study. Of these, 25 dyads consented and participated in the study. Interviews for each dyad lasted approximately 1–1.5 h. All the interviews were conducted in Mandarin or dialects (Teochew, Hokkien or Cantonese) except for one dyad which was conducted in English.

All patients were at the mild stage of dementia and Chinese. Participants were mainly female (72%), widowed or divorced (52%) and primary educated or less (68%). Significantly, only 2 (4%) had signed a Lasting Power of Attorney (LPA) which is a legal document allowing a person to appoint one or more donees to make decisions on their behalf in the event the person had lost the mental capacity to do so.²² Majority of FCGs were female (72%), had secondary education or more (84%) and lived with the patient (60%). (Table 1).

Table 1.

Participant characteristics.

	Patients (n = 25)	Caregivers (n = 25)
	n (%)	n (%)
Mean age	82 (73–90)	63 (50–85)
Gender
Males	7 (28)	7 (28)
Females	18 (72)	18 (72)
Marital status
Married	12 (48)	21 (84)
Widowed/divorced	13 (52)	4 (16)
Educational status
Primary or less	17 (68)	2 (8)
Secondary and above	8 (32)	23 (92)
Type of housing
Public housing 1–3 room	5 (20)	4 (16)
Public housing 4–5 room	13 (52)	12 (48)
Private housing	7 (28)	9 (36)
Religion
Buddhists	6 (24)	10 (40)
Taoists	9 (36)	0
Christians	6 (24)	9 (36)
Free thinkers/no religion	4 (16)	6 (24)
Living with patient	–	15 (60)
Average monthly income
<$5000	–	19 (76)
$5000-$10,000		5 (20)
>$10,000		1 (4)

From the analysis of the interviews, we identified three main themes.

1. Entrusting FCGs to make decisions for EOL care and planning for death

Most patients openly talked about death and that it was inevitable. However only 60% of patients and their FCGs acknowledged that the patient’s memory was fading and this indicated onset of dementia. Regarding the present and future, approximately half of patients (n = 13) indicated that they wished not to think about them, suggesting a strong denial of the condition. Patients also considered dementia to be a part of the normal aging process. As one patient said,

“Once we’re too advanced in age, we regress into our second childhood (laughs). We become senile and dim-witted, and do not have common sense anymore. We become hare brained and no longer know how to do everyday tasks. Everyone becomes like that in extreme old age” (P15).

In terms of discussing EOL matters with family, many patients reported making funeral plans with their family, but rarely discussed future health care matters with family members. Patients articulated a wish to receive funeral processions according to their religious or spiritual beliefs. Some participants had also made concrete plans to ensure that their preferences were realized. For example, one patient reported,

“I’ve bought an eternal resting place at Bukit Batok. My ancestors are placed there, and I want to be together with them…I have instructed that my ashes be placed there if possible. If for whatever reason that’s not possible, then the easiest solution is after cremation, just scatter my ashes into the sea” (P22).

Another FCG reported,

“We are not very religious but my mum, she is a Buddhist. She already said that she wants to buy a place at the temple which we have already gotten her” (C16).

While many patients rarely discussed future health care matters with family members, they entrusted these decisions to FCGs to make decisions on their behalf. Patients had limited knowledge of ACP or advance directives/living wills and were apprehensive that these documents will not be respected when time comes. They also felt that preparing these documents may show that they do not trust their FCGs to make the right decisions for them. One patient said,

“No point (in doing a living will). If you really believe there’s a God, and know, and you really know what to accept it (death) right? So it’s really no point you know, doing all these. I mean to me it’s as long as you know you’ve a good family, the children already told me, ‘Mum, don’t worry about all these.’ You see. And then I can’t … and tell them ‘No, no! I have this (living will)’ … they’ll be very angry isn’t it. They already said ‘Mum, don’t worry about it. We’ll do (P3)”

Another patient also stated,

“I don’t have to worry. My children, they know how to handle. I have 8 children in all, sons and daughters—8 children in all…They will have it all worked out for me” (P12).

2. Supporting patients to die peacefully at home

When specifically asked about EOL care preferences, patients and FCGs stated that they did not want to unnecessarily prolong their (patient) life, especially if prolonging life involved suffering or performing medical procedures, but would rather be cared for at their homes. One patient said,

“It’s [medical procedures] very troublesome. I’d earlier die than come to this stage, is a kind of relief” (P4).

FCGs also articulated this preference,

“There is no need to prolong the life if let say it is something… have to go under the surgeon” (C5).

There appeared to be several reasons why patients did not want to unnecessarily prolong life. Apart from the fear of medical procedures, patients wanted not to burden their families during their illness and/or death.

“My wish is to just let me go up to the Lord. I don’t want my children to suffer. Because I love them—they are good children” (P18).

Fear of being a financial burden was another reason.

“On money matters…I’ve instructed my next generation to sustain me for as long as it is within their means. If they are no longer able, just send me to the old folk’s home and let it be. I am afraid to bring trouble to my next generation. I do not want to be too heavy a burden to them” (P22).

Home was a preferred place of care due to convenience and comfort. One prerequisite was that many patients and FCGs would only choose to be home if medical care or domestic help was available. FCGs articulated their wish for the patient to remain home,

“Of course at home. I don’t want her to be at other places” (C10).

Patients also articulated this desire,

“In my heart, of course I wish to stay at home” (P12).

They cited reasons of comfort and convenience,

“I feel more comfortable at home” (P5).

They also said,

“At home, if they can engage a maid (domestic helper) for me” (P20).

Many FCGs said they would be the ones providing care to their loved ones at home,

“At home we have our own family members and of course we will take care of her in the best of our ability” (C23).

Some FCGs and patients would only choose other options like nursing homes or hospitals if care could not be provided at home,

“At home. If they can engage a maid (domestic helper) for me. Otherwise send me to the hospital” (P20).

3. Supporting FCGs to cope with patient’s condition

Caregiver burden was noticeable for all FCGs interviewed. All FCGs reported difficulties coping with patient’s condition and its implications, especially in providing care to the patient,

“I don’t think I can cope up with it [taking care of patient]” (C3).

Some had a difficult time with caregiving in addition to working or taking care of their own families,

“Very stressful and I work late” (C2).

“So I have to run between the two houses. My father noticed that I am running between the two houses and he lectured me that I have my own family, I shouldn’t be coming back here too often” (C22).

Consequently, FCGs articulated feeling a mix of emotions including worry, fear, frustration, and anger. For instance, one FCG reported,

“Now I have to try and deal with it because I sometimes can get very agitated and can be very energy-sucking for me” (C18).

“Sometimes I feel so angry with her [patient] that I feel like dying” (C12).

This can be exacerbated by the patient’s memory loss,

“Not just the person’s personality and character, but because of the fact that the person keeps on forgetting, it sometimes becomes very tiring and very frustrating for the other party… We understand, but it’s just us. We just get… you know” (1C8).

FCGs noted the negative implications of these emotions, including one FCG who said that she had a negative health consequence,

“In November, I fainted and the doctor told me that I should not be agitated” (C12).

A number of FCGs wanted more services,

“There’s a lack of support and respite for the caregivers” (C19).

FCGs also voiced the need for and suggested more facilities such as eldercare, physical and nursing care, and day care centres to help provide care to their loved ones,

“That of course is good that healthcare workers like for instance you know, maybe have a…everywhere…particularly in the neighbourhood should have this kind of old people health care centre” (C21).

“Can I have more nursing homes for dementia people?” (C8).

Discussion

We conducted a qualitative study of community-dwelling older Chinese Singaporeans with mild dementia and their FCGs to investigate their perspectives on EOL care. Our analysis revealed three main themes: planning for cognitive decline and death, supporting patients to die peacefully at home and supporting FCGs to cope with patient’s condition.

Planning for cognitive decline and death

The results show that while patients made plans for their future, these were mostly restricted to discussing funeral arrangements. Even though patients wanted to avoid unnecessary life-extending treatments, discussions with FCGs surrounding future health care decisions including ACP were limited. Patients tended to leave these decisions to their FCGs. This characteristic is consistent with Chinese Confucian principles of family and medical decision making.²³ This would account for the perceived reluctance of such patients to engage in early ACP discussions/conversations. Conversely, there was also concerns by some patients that in doing their ACP, they would be showing mistrust in their FCGs to make the right EOL decisions for them. These findings are in concordance with findings by Ali et al.²⁴on English speaking Singaporean patients with mild dementia which found a similar pattern of transference of decision making to family members, leaving them to discuss with healthcare teams regarding treatment decisions. In the face of such deferment of decision making to the FCGs, FCGs ironically may be driven by feelings of guilt and filial piety to engage in life-extending treatments for patients at EOL.

The findings of our study also indicate that engaging patients in EOL care conversations may be a challenge for health care providers as many patients seemed to be in denial, despite having received a formal diagnosis of their illness.²⁵ Denial may arise from a fear of loss of autonomy in the future and may be a way to cope with their illness.^25,26 Denial may also occur because unlike cancer or organ failure, dementia does not cause many physical symptoms. Cognitive decline is often considered a part of the aging process rather than a symptom of an illness. Ali et al.²⁴ found a lack of inclination to plan for the future with patients choosing to adopt a more passive wait-and-see approach among Singaporean patients. As a result, patients may not be motivated to seek help and information about the disease process and engage in ACP.

It was noted that religious and spiritual beliefs played a large role in how patients would want their last rites to be performed. Health care providers should also explore patient’s religious beliefs during EOL care conversations. Understanding how these beliefs potentially influence patients’ priorities and values would also aid in ACP.

Taken together, these findings highlight the need to constantly engage patients in the early stages of dementia so as to educate them about the disease and provide them opportunities to reflect on and verbalise their personal priorities at EOL. A recent study by Huang et al.²⁷ in Taiwan using a family-centered ACP intervention demonstrated significant improvement in knowledge of late-stage dementia treatments and ACP, as well as reduction in decisional conflicts between patients with mild dementia and their FCGs.

Greater time and resources devoted to this group of patients could perhaps yield greater success in ACP and making LPAs.

Supporting patients to die peacefully at home

Regarding place of death, most verbalised they wanted to die at home although a few realized that this arrangement would not always be feasible due to lack of caregiving support at home. Most patients asked for a live-in domestic helper to provide care for themselves. However, not all families or patients may choose to employ a live-in domestic helper for a variety of reasons (eg. language barrier, living space constraints, lack of rapport between domestic helper and patient, financial limitations etc.). This highlights the continued need to develop more affordable home dementia care services/providers to help provide care for patients at home as they enter advanced stages of dementia.

Supporting FCGs to cope with patient’s condition

Another key component in supporting caregivers to continue caring for patients at home is the provision of dementia care education for FCGs. While there are currently no statistics in Singapore on how many FCGs undergo dementia care education in a structured setting, there is a need to continually engage, educate and empower them to help them cope with the stresses of looking after their loved ones. For greater outreach and accessibility, dementia care education services can be extended from a few specialized centres to community centres or provided during home visits by community workers. Leveraging on technology such as mobile phone apps to disseminate caregiver education material would help as well. Other strategies to support FCGs include subsidised dementia home caregiving services, extending the operating hours of dementia day care centres to include weekends public holidays, elder sitting services and palliative home care towards EOL. Providing more family care leave to FCGs would also relieve their stress of having to balance care with work priorities.

The study is unique in being able to explore the EOL care preferences of patients with mild dementia and their FCGs. Another strength was that it was a multi-dialect study involving older Chinese dialect speaking participants with high quality translation and transcription. This allowed for greater in-depth comprehension of the perspectives of patients with mild dementia towards their EOL care. Limitations of the study included a small and homogenous sample, thus limiting comparisons by ethnicity and education.

Conclusion

The study findings indicate there are three important components that would enhance the delivery of patient-centred EOL care in patients with mild dementia– planning for cognitive decline and death, supporting patients to die peacefully at home and supporting FCGs to cope with patient’s condition. Strategies to provide patient-centred care at EOL include helping patients understand the disease and to reflect and express their wishes from the time of diagnosis, providing more subsidised home dementia care services that aid patients and FCGs during EOL, and enhancing dementia care education for FCGs at the community and home level including the use of technology.

Footnotes

Acknowledgements

We would like to express our thanks and appreciation to all the patients and their family caregivers (FCGs) who participated in this study.

Author contributions

DS and CM researched literature and conceived the study. DS and CM were involved in protocol development and gaining ethical approval. DS and AP were involved in patient recruitment. AP and SH conducted the interviews. CM was involved in data analysis. CM and DS wrote the first draft of the manuscript. All authors reviewed and edited the manuscript and approved the final version of the manuscript.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Lien centre for Palliative Care Extramural Research Award 2012. LCPC (ER)/2012/0005.

Ethical approval

Ethical approval (include full name of committee approving the research and if available mention reference number of that approval) for this study was obtained from The Institutional Review Board at SingHealth (CIRB Ref: 2012/958/A)

Informed Consent

Written informed consent was obtained from all subjects before the study.

Data availability

The datasets generated and/or analysed during the current study are available from Professor Chetna Malhotra, Lien Centre for Palliative Care, Duke-NUS Medical School, 8 College Road, Singapore 169,857. Phone: +65 6516 5692; Fax: +65 6221 7372. Email: chetna.malhotra@duke-nus.edu.sg

ORCID iDs

Dennis Seow

Chetna Malhotra

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