It “Made a Huge Difference when He had a Dry Bed in the Morning”: Impacts of Dementia-Related Incontinence on Unpaid Carers’ Sleep, Health, and Quality of Life

Abstract

Incontinence is a common consequence of dementia. Incidence is more likely at night, having repercussions for sleep quality and the exacerbation of waking symptoms of dementia as well as negative carer affect. However, the person-centred experience is underrepresented. A thematic analysis was conducted on continence-related comments from a pool of 94 carers participating in a postal sleep survey. Then, a narrative analysis was used on interview transcripts from 13 participants who took part in follow-up interviews after their care recipient had transitioned into aged residential care. Themes illustrate how promoting continence or managing incontinence impacts unpaid caregivers in terms of sleep disruptions and subsequent wellbeing. These are presented alongside overarching narratives of sleep, continence, and caregiving. Including the physical nature of continence-related support and its impact on sleep practices, as well as the emotional impact of balancing sleep needs alongside caregiving responsibilities and overall wellbeing with ageing. Toilet use and (in)continence needs can have profound impacts on sleep and wellbeing within dementia care, having the potential to jeopardise the overall home care situation. Findings will inform future research in the field of sleep and ageing as well as strategies for supporting families affected by dementia. In particular, the results will inform the production of a core outcome set comprising appropriate quality indicators for people living with dementia, their caregivers, and family so that adequate continence care can be assessed and supported in future interventions.

Dementia is a prominent global health issue with increasing prevalence due to an ageing population (Fleming et al., 2020). In New Zealand, dementia affects approximately 70,000 people, with that number predicted to more than double within the next 20 years (Ma’u et al., 2024; Ma’u et al., 2021b). People experience different dementia symptoms and to varying degrees. However, cognition, memory, emotions, and behaviours are commonly affected and decline in a progressive manner. Most people with dementia live in the community and are supported informally by unpaid carers. These are typically family members or friends who also experience physical and mental effects secondary to caregiving (Abey-Nesbit et al., 2022; Adelman et al., 2014; Annerstedt et al., 2000). Therefore, to enable living well with dementia, it is recognised that greater understandings of the unique experiences of those with dementia and their unpaid carers are required.

Sleep has been recognised as a pillar of wellbeing. When sleep is compromised, significant negative impacts have been recorded regarding waking performance, mood, and cognitive functioning, as well as physical and mental health (Hale et al., 2019; Reid et al., 2006). Sleep disruptions have been observed to occur with greater extent for people with neurodegenerative diseases like dementia compared to older people without dementia (Ancoli-Israel & Vitiello, 2006; Bliwise, 2004). Irregular sleep timing, confused awakenings, sleep disordered breathing, and daytime sleepiness have all been identified as more likley with increased age and dementia (particularly with Alzheimer’s disease and Lewy Body dementia). Such sleep disruptions have ramifications for exacerbated waking symptoms of dementia (McCurry & Ancoli-Israel, 2003). Sleep disturbances also pose a significant issue affecting the sleep and wellbeing of co-residents and unpaid carers (Almutairi & Zauszniewski, 2023; Gibson et al., 2014). Previous research has identified that, when the sleep of people with dementia and carers is negatively affected, carers are more likely to report feeling overwhelmed and to instigate residential care arrangements (Gibson & Gander, 2020). Qualitative works indicate that the changes to sleep can be also be gradual with the progression of dementia and can therefore go unaddressed (Gibson et al., 2023). Therefore, it is important to understand the nuanced nature of factors affecting sleep amongst families living with dementia to enable appropriate community support and interventions.

Continence is often compromised with diseases such as dementia. In New Zealand, 50% of people living with dementia in the community are estimated to experience urinary incontinence and 27% faecal incontinence (Burholt et al., 2024a, 2024b). As with sleep disruptions; incontinence has been identified as one of the more challenging consequences of dementia and among the major contributing reasons for admission into residential care services (Gove et al., 2017). However, due to the complexities of both faecal and urinary incontinence as well as the social taboos and stigma surrounding the topic, incontinence remains an under supported and under researched issue (Wagg, 2018).

Needing to use the toilet and incidence of incontinence can be a particular issue for nighttime, having implications for sleep (Bliwise et al., 2014; Miu et al., 2010). However, much of the previous research concerning sleep and dementia care does not include information on such issues. For example, a frequently used sleep inventory for Alzheimer’s disease quantifies the frequency and severity of several sleep issues such as troubles getting to sleep or staying asleep, confused awakenings, and daytime sleeping (Tractenberg et al., 2003). However, issues such as incontinence fall under the “other” category and are likely underreported. Past research has used somatic monitoring to quantify episodes of incontinence and the effects on objective sleep status, indicating feasible methods to monitor such relationships (Rose et al., 2015). However, the lived experience of incontinence-related sleep disturbances among people living with dementia and their unpaid carers remains relatively unpresented.

The present research aimed to explore and represent the sleep-related experiences of unpaid carers supporting a someone with dementia-related (in)continence needs. To achieve this, a secondary analysis was conducted on relevant qualitative data within pre-exiting sleep surveys and interviews (collected by the first author).

Methodology

The present study used a hermeneutic phenomenological approach. This is underpinned by the assumption that human consciousness and the environment in which we live are interrelated; and that by uncovering and revealing the meaning of interpersonal experiences we can gain a deeper and more insightful understanding of ourselves, our experiences, and the experiences of others (Howell, 2013).

Data for the present study included open-ended comments sourced from an extant postal survey concerning the sleep and wellbeing of unpaid carers for people with dementia. Data was also sourced from the transcripts of one-on-one interviews conducted approximately two-years later with participants whose care recipient had since moved into aged residential care. Both projects were reviewed and approved by the Health Research Council (funder), the New Zealand Health and Disability Ethics Committee (16/CEN/101), as well as member-checked by advocates at the Wellington-based services. Methods of recruitment, data screening and analysis are summarised by source below.

Postal Survey – Recruitment and Procedures

Surveys were completed by unpaid carers of someone with cognitive impairment or dementia who they were currently living with and caring for in the New Zealand community. The regional services associated with Alzheimers New Zealand or Dementia New Zealand are key charitable trusts providing dementia-specific services, advice, information and education nationwide. All 21 of these services agreed to distribute the survey by post to their members from late 2016 to early 2017. Recipients were a convenience sample identified as eligible either directly by the service provider; or by membership on specific external mailing lists; or, in some cases, packs were sent to all members (depending on the size and conventions of each organisation).

Approximately 4720 study packs (including survey, information sheet and prepaid return envelopes) were sent to these services for circulation with the largest numbers going to the main urban centres of New Zealand (Auckland, Wellington, Waikato, Canterbury and Otago). Participation of the sleep survey was anonymous and completion and return of the survey inferred informed consent (Gibson & Gander, 2020). A total of 526 surveys were returned for the original sleep survey, all of which were screened for inclusion in the present secondary analyses.

Postal Survey – Data and Analysis

The survey included standardized scales pertaining to sleep and wellbeing (Gibson & Gander, 2020). The data used in these secondary analyses were the hand-written comments provided under sections at the conclusion of the survey pertaining to: ‘your caregiving situation’; ‘your own sleep or the sleep of the person you support’; ‘your physical or mental health’; and ‘any additional comments if required’.

Survey participants comprised 526 unpaid carers located across both urban and rural areas of New Zealand. Data across the open-ended comments sections were screened for content relating to promoting continence, toilet use, or managing incontinence. Of the 526 participants, 94 included such content. Therefore, their comments were included as data for the present study.

Reflexive thematic analysis was used as an overarching approach for interpreting and describing the sleep survey comments (Braun & Clarke, 2019). Data familiarisation was achieved by the research assistant (JF) and supervisor who had collected the data (RG) reading through all the comments multiple times to identify and highlight anything that related to toilet use or (in)continence. The data was then coded into 32 semantic (descriptive) codes (using NVivo 12 software). Next, construct latent (interpretive) codes were constructed through a process of merging similar content and further defining and re-naming the codes in clearer alignment with the data. The outcome of this stage resulted in 12 latent top-level codes, and 18 latent sub-level codes. Further defining and revising thematic codes occurred by an iterative process of re-grouping and screening across the entire dataset to gain appropriate context during supervisory meetings. This was key to ensuring that the themes accurately reflected participants’ experiences. Final thematic workshopping took place with the principal investigator (VB) and members of the wider research team (within the University of Auckland) via in-person and virtual meetings. This resulted in the construction of 17 basic themes which were grouped under 6 organising themes and 3 major themes.

Interviews – Recruitment and Procedures

Interview participants were recruited from an optional mailing list compiled by the first author during the initial postal survey. Approximately two years after the survey, invitations were sent (by post and/or email) to 93 potential participants who lived either within the lower North Island or rurally, with the intention of representing both urban and rural carers.

Twenty carers took part in these retrospective interviews. These were semi-structured and explored: the experience of caring for someone with dementia; how sleep changed for both parties as the disease progressed; how sleep problems were negotiated; the role of sleep disturbances in the decisions about transitions to aged care; and how carers were sleeping after the transition (and, if applicable, following the death of the care recipient) (Gibson et al., 2023). The interviews were collected in person (n = 13) or over the phone (n = 7, due to rural living or personal preference) and were a median duration of 55 minutes long (range 28-103 minutes).

Interviews – Data and Analysis

A description of the original interviews, the demographic details of both the carers and their care recipients with dementia are published elsewhere (Gibson et al., 2022, 2023). Transcripts were screened for content relating to promoting continence, toilet use, or managing incontinence. Of the 20 interview transcripts, 13 included such content and therefore were included as data in the present study. Most (62%) of the 13 interviewees were female and living in urban rather than rural regions. Their average age was 75.2 years (SD = 6.9 years) and they had provided dementia-related care for an average of 4.1 years (SD = 1.4 years).

Narrative analysis was used as a framework for interpreting and portraying the expressions of motivations, feelings, and behaviours of the carers in the context of unpaid dementia care (Herman & Vervaeck, 2019). This approach was based on the underlying theoretical assumptions and understandings of narrative psychology (Wong & Breheny, 2018) and was used to guide the interpretation of the interview data, helping form the narratives of the participants’ lived experiences in the setting of in-home informal dementia care.

The initial data analysis involved (JF and RG) listening to the audio recordings and reading through the interview transcripts several times and highlighting any accounts (‘stories’) relating to continence and/or incontinence which provided more depth to the thematic content from the initial comments from the survey data. Interview transcripts were imported into NVivo 12 software and all content relating to toileting or (in)continence was identified.

Nine common accounts were identified and compared across interviews. These narratives were informed by the initial survey themes and, as with the thematic analysis, final workshopping took place with the senior author (VB) and the wider research team via in-person and virtual meeting, resulting in the construction of four common narratives. Together these processes enabled the appropriate interpretation and descriptions concerning the lived experiences of sleep, (in)continence, and dementia care.

Findings

Survey themes are presented in brief, followed by a more in-depth presentation of the interview narratives. Pseudonyms have been used for the participants and their care recipients to protect their identities throughout.

Sleep Survey Themes

Three major themes were constructed from the written comments regarding toilet use and/or (in)continence in relation to sleep. These were ‘sleep becoming progressively disrupted’; ‘managing (in)continence for supporting sleep and waking life’; and '(in)continence-related sleep disruptions impacting carers’ quality of life’. These themes are summarised with supporting quotes in Table 1 and in brief below.

Table 1.

Summary of the 3 Major Themes Together With 6 Organising, and 17 Basic Themes Constructed From the Sleep Survey Comments

Major, organising, and basic themes	Theme description	Supporting quotes
Sleep becoming progressively disrupted
1. A familiarity of negotiating toilet use with sleep across the lifespan
Acceptance of sleep changes with ageing	Notes around beliefs and expectations that sleep health might decline with older age	“We are in–our 80s - expect patterns to change” (Female spouse, 83 years)
Carers accustomed to disrupted sleep	Carers are familiar with sleep disruptions and feel they can still function properly on the sleep they achieve each night	“My sleep pattern is the same as it was 50–yrs ago - I manage on an average of 6 hours actual sleep–or less - but always– broken - it doesn’t concern me” (Female spouse, 68 years)
Carers get up during the night to use the toilet	Carers sleep well despite waking to use the toilet at night, getting up is not an issue as they get back to sleep easily	“Apart from 1 or 2 trips to the toilet I sleep very well myself” (Female spouse, 75 years)
Gradual changes noticed in person with dementia’s continence needs	Carers notice and expect gradual increases in night-time and early morning toilet use for person living with dementia as they age and symptoms progress	“When he wakes, I listen that he has found the toilet. Then when he comes back to bed, I ask him to turn the light off so I don’t have to get up. Sometimes he just likes to cuddle and talk” (Female, spouse, 84 years)
Medical conditions exacerbate issues	Person with dementia’s co-existing medical conditions increase night-time toilet needs contributing to sleep disruptions	“He used to sleep well, quickly falling asleep, getting up 1 - 2 for the toilet during the night and going right back to sleep, waking feeling fit in the mornings. Prostate cancer has changed this, some nights he is up every 30 mins and can’t find his way back to bed” (Male, spouse, 75 years)
2. Night-time toilet use contributes to sleep disruptions
Person with dementia’s night-time toilet needs begins to impact both parties’ sleep	Person with dementia is still able to use toilet unassisted during the night, but increased needs contributing to sleeplessness	“He gets up every 2 hours to toilet. I wake and turn light on for him. He doesn’t feel tired, I do” (Female spouse, 71 years)
Carers’ pre-existing sleep problems exacerbated by toilet use associated with age and dementia care	Carers sleep has never been that good and now sleep disturbances have increased due to care recipient’s dementia symptoms and increased night-time toilet use. These sleep disruptions occur in addition to carers own night-time toilet needs	“My sleep has always been erratic but worsened due to my husband’s rapidly deteriorating condition. His sleep is also erratic as he doesn’t comprehend night or day and often wakes me for reassurance. He gets up regularly to go to the toilet, as do I” (Female spouse, 71 years)
3. Incontinence presented a great problem for sleep
Person with dementia’s incontinence causes sleep disturbances for carer	Carers sleep is disrupted due to managing incontinence, carer often schedules night-time toilet visits to avoid accidents	“Incontinence presented most problems with sleep” (Female spouse, 74 years) “Lack of sleep effects everything” (Male spouse, 77 years)
Carers sleep quality is undermined	Carer sleeps on ‘high alert’, and has broken sleep due to waiting to assist care recipient with incontinence during the night	“The quality of sleep is also undermined because I always have an ear out for her” (Daughter, 54 years)
Managing (in)continence for supporting sleep and waking life
4. Carers use strategies to relieve the impact of incontinence on sleep
Carers use their own night-time toilet needs as an opportunity to assist care recipient with continence support	Carers are used to getting up to the toilet themselves at night with minimal sleep disturbances, so they maximize this time by also assisting the person with dementia	“I usually need to get up for a pee in the small hours so it’s no problem to help [X] up and onto the commode at this time and give her a change if necessary” (Male spouse, 83 years)
Carers acknowledge medications that influence toilet use and incontinence at night	Carers sleep becomes significantly impacted. Dementia-related medications are noted as relieving incontinence and reducing frequency of sleep disturbances for both parties but not explicitly used for these symptoms	“Sleep was intermittent and disruptive, however with medication normalcy returned” (Female spouse, 74 years) “X sleeps well now because he is on Quetiapine 75 mg night. He has been on Quetiapine for about 2 years” (Female souse, 69 years)
(In)continence-related sleep disruptions impacting carers’ quality of life
5. Incontinence impacts carers’ mental, emotional, and physical wellbeing
Carers experience significant stress	Carers are often tearful, feel frustrated, and wish they had more support. Managing things like catheters also creates additional stress, particularly when accidents occur	“Sometimes get very stressed, especially having to deal with double incontinence. I have taken my husband to the incontinence clinic at the hosp[ital] 3 times, I wish I had more help in this area” (Female spouse, 66 years) “As my husband now has a catheter … which causes him concern. I find this also quite stressful for myself” (Female spouse, 81 years)
Managing incontinence adds to carers workload	Carers clean up accidents, do extra laundry, frequently change clothing and bedding. Reports of feeling frustrated with the additional workload and physical toll	“Washing almost every day due to incontinence of my wife get very frustrated” (Male spouse, 87 years) “He is incontinent of urine which means washing bedding on most days and sometimes changing trousers during the day” (Female spouse, 70 years)
Carers concerned about coping with incontinence as they both grow older	Incontinence adds another level of support and carers are worried about coping long term. Carers quality of life is impacted. Carers reflect on aging themselves and already being in a state of mentally and physically struggling	“I really don’t know how I can cope. I’m 87 next month and just feel I cannot keep on doing all the washing and cooking and coping” (Male spouse, 86 years)
6. Incontinence drives care referral
Incontinence tips the coping scales and leads carers to consider residential care options	Carers are sleep deprived and struggling to cope now that the person with dementia is incontinent. Lack of support and finance restricts options	“My wife is now becoming incontinent, and I am struggling to care for her. She SHOULD be in a home, but I cannot afford to pay for it” (Male spouse, 86 years)
Carers are unable to cope now that care recipient is completely incontinent	Carers are struggling to cope with managing incontinence, incontinence is seen as a hospital-level consequence of dementia and is a deciding factor, and often the reason for initiating movement to residential care	“We knew she would have to go in somewhere eventually as I’m not a nurse and she would need professional care - that time has come - she is completely incontinent” (Daughter, 55 years)

Sleep Becoming Progressively Disrupted

This theme relates to the increasing levels of support required from carers around (in)continence around bedtime and overnight. Comments concerning the initial stages of dementia detailed increased attention to toileting being required at night. While this was noted as influencing sleep; effects were relatively minor regarding degrees of assistance required. Furthermore, comments were generally accepting of these typical (or expected) age-related toileting changes among the care recipients becuase changes to nighttime toilet use and sleep were presented as related to pre-existing conditions and/or medications of the person living with dementia. Carers also recognised changes to sleep and toileting needs within themselves (compared to when they were younger). Therefore, they tended to adapt and cope well with minor changes of the care recipient at this stage.

With the progression of dementia, carers noted changes to nighttime toilet needs. For example, multiple trips to the bathroom and increased assistance required at night. This negatively impacted sleep for both parties. Key concerns noted by carers included the amount and the quality of sleep they were able to achieve alongside the advancing needs of the care recipient with dementia.

Incontinence issues were reported as becoming more frequent or problematic with the progression of dementia. Carers described increased sleep disruptions associated with the heightened care assistance for the person with dementia’s toilet use and incontinence needs. Alongside physical care provisions, carers reported resisting falling into deep sleep:

The impact on my sleep in not just actual interruptions when mum goes to the toilet - which is sometimes every hour but mostly 3 - 4 times a night. The quality of sleep is also undermined because I always have an ear out for her, so I never drop into a deep sleep. Being on the edge of wakefulness is debilitating and is a hard pattern to break, even when mum is away on respite (daughter, 54 years).

Sleeping on “high alert” was commonly reported by carers due to feeling the need to be on “standby mode” to assist their care recipient with toilet use at various and frequent stages of the night. While this prioritised the care recipients’ needs; carer’s sleep became compromised, which meant they had to develop systems of management.

Managing (in)continence for Supporting Sleep and Waking Life

This theme pertains to the stratrgies carers developed to reduce the impact that (in)continence-related care assistance had on their sleep. For example, some noted waking the care recipient during the night to prompt toilet use in alignment with their own bedtime or toilet needs. This strategy was used in a bid to reduce incidents of incontinence and prevent additional sleep disruptions. Such a strategy reportedly reduced carer workload and stress as well as protected the dignity and comfort of the care recipient (through allowing them some authority and independence over toilet use).

Medications were noted by some as having unexpected advantages for issues of incontinence. Although not specifically sought out by carers for this reason, some of the care recipients had a significant reduction or eradication of their issues with incontinence after starting new medications. For example, some noted the use of antipsychotics subsequently reducing nighttime awakenings and frequency of toilet use.

Such strategies were considered as facilitating more ‘normal’ sleep patterns for care recipients and fewer sleep disruptions for carers, reducing the need to sleep ‘on guard’. While methods like timed toilet use and medications reportedly alleviated issues around (in)continence at night; care load in this area still typically increased.

(In)continence-Related Sleep Disruptions Impacting Carers’ Quality of Life

This final theme highlights how carers commented on the impacts of managing nighttime (in)continence on their overall mental, and physical wellbeing. Comments typically related to feeling unsupported or ignored by others as well as the socially isolating nature of the situation. This contributed to elements of emotional distress and frustration.

In addition to a lack of support and isolation; carers also reported escalated stress associated with incontinence-related incidents and nighttime care assistance such as additional cleaning, laundry and calming of the person with dementia. Subsequently the toll on these carers included exacerbated sleep problems, fatigue, and feeling a reduced sense of coping.

In summary, these three major themes represent the personal experiences of informal carers who reported issues around toilet use or (in)continence which impacted on their sleep and/or that of their care recipient. These appear to ultimately have implications for the wellbeing of both parties and the overall caregiving situation. The themes developed from these short, written comments (collected from the postal survey during active home-based care) are developed further using the narrative analysis from the subsequent retrospective interviews below.

Interviews

Four common narratives were identified and compared across participant’s stories reflecting on (in)continence, sleep, and the transitional nature of dementia care. These were: “It made a huge difference when he had a dry bed in the morning’’ - relating to accounts of how (in)continence contributed to carers experiences and expectations around satisfactory overnight care provision; “It was just a nightmare” - relating to carers’ recollections of unsuccessful attempts to gain external assistance or appropriate supplies for alleviating or containing incontinence; “Can’t go on much longer” – relating to carers accounts of how nighttime (in)continence-related support had ultimately impacted their ability to sustain caregiving at home; and “What a relief” - relating to expressions of how, post transition to aged residential care, carers felt a sense of relief that their responsibilities including around nighttime (in)continence had been alleviated and their sleep somewhat restored.

Details of each narrative with illustrative quotes can be found below. These resonate with the nature of the written survey comments concerning how sleep becomes increasingly worse with ageing, the progression of dementia, and growing (in)continence-related support needs. However, the narratives also provide more indepth examples of the experiences and consequences of the situation, particularly with hindsight.

It “Made a Huge Difference When He had a Dry Bed in the Morning’’

This narrative was common and revealed how supporting care recipients’ (in)continence needs had contributed to carers experiences and expectations around providing satisfactory overnight care. This included their anxieties associated with the potential of nighttime incontinence and feeling a need to sacrifice their own sleep. For example, carers spoke of fearing accidently sleeping through periods of being needed for continence care or inadvertently leaving their care recipient sleeping in wet or soiled bedding. Such incidents had raised emotional distress for both parties as well as feelings of guilt for the carer (relating to inability to prevent or immediately address incidents of incontinence). Therefore, carers recalled feeling a need to be on constant standby, often foregoing of their own sleep time and preferences. Subsequently this affected their wellbeing and the nature of their relationship with the care recipient which became increasingly one of formal guardianship. For example, Harry (81 years) who had cared for his wife for nearly three years reflected:

In those days I had to get something to put over the sheets and that, because she would wet herself during the night (even though I put those pull-ups on her). Quite often she would… like if I didn’t try and get in the habit of sort of waking about every hour and a half and basically try to wake her up and then drag her to the toilet to go to the toilet, then yes, you could end up with a bit of a mess in the morning. So yes, that interfered with your sleep quite a bit because every time you sort of just got into a light sleep, you’d wake up and think - ‘right, I’ve got to get up and get her to the toilet’. That was four or five times over the period overnight, so that was quite a worry.

Later in the interview, Harry further illustrated how he had felt a need to constantly be available to tend to his wife’s continence-related needs, and how this was always on the edge of his mind:

…as I say, you were very conscious you had someone that had no control [of continence]. You had to make sure that you got in there quite frequently, and quite often it would be a matter of, even if you get her there, she’d be saying she didn’t want to go and all of that – but she would. So, I think that as far as the sleep goes, that was the biggest problem. It’s on your mind all the time.

Overall, this narrative captures the immense relief and gratitude carers recalled feeling when discovering a clean and dry bed in the morning:

You go to bed, and you know in the morning with every other thing you’ve got to do, you’ve got to get up and it wasn’t just the sheets, it would be the whole bedding. The worst thing is he’s been lying in that…you feel as though you’re neglecting them and things. I know yours is a sleep survey, but those things do affect you because you’re worrying about it the next day, you know that’s how it’s going to be, and that made a huge difference when he had a dry bed in the morning. (Emma, spouse, 66 years)

Emma reflected that her comments may not have been expected given that the research focused on sleep but she felt the need to highlight how much of an issue incontinence had been for them. The relief associated with managing (in)continence highlights the importance of effective continence management for improving carers emotional state, sleep, and overall quality of life.

“It was Just a Nightmare”

This narrative encompasses carers accounts of engaging with health professionals to assist them with promoting continence and relieving or managing incontinence with the goal of reducing the impact it was having on sleeping and waking life. Many carers spoke of their disappointment that the health professionals they had approached seemed to lack knowledge and awareness of dementia and incontinence. They therefore had difficulties obtaining reliable advice and suitable products for containment:

…that was one big battle I had, was to get them to give me continence supplies. It was just a nightmare… every morning I was having to change the whole bed because the ones [pads] you can buy are of no use at all, and apparently he did have a condition where he does all his urinating at night almost, and the other thing, his bowels just went continually so there was that. But in the end the only way I got the continence supplies was my friend just went to the district nurse in town and just demanded them. I never did see the continence nurse or anyone. (Emma, spouse, 66 years).

Here, Emma recalls her attempts at sourcing the correct advice and products as ‘a battle’ and ‘a nightmare’. Sonia shared a similar experience in struggling to obtain appropriate incontinence products to support their needs at night:

They were hopeless…[I was having to change] not only sheets but all the blankets. It’s just a nightmare. And then, I don’t know how, I’m not sure how eventually we got the right product, but, but it took two years. It took two years to get the right product. (Sonia, spouse, 68 years)

In this example, Sonia expressed continuous frustration and disbelief at the poor quality of the local health services. Despite her willingness to invest in superior products and expert advice, she found herself left with ineffective products. Her account emphasises the disappointment and confusion resulting from the failure to provide adequate support.

Together, such challenges contributed to an already challenging situation with regards to sleeping and waking life (contributing to the ‘nightmare’ type language used). Such difficulties significantly contributed to heightened levels of stress and compromised carers’ ability to provide optimal support which was particularly needed at night. The time and energy invested in seeking appropriate products and advice contributed to further negative affect for carers who reported already feeling overwhelmed. In Sonia’s case, such lack of support eventually led to her exploring residential care options for her husband earlier than she would have preferred.

“Can’t Go on Much Longer”

This narrative encompasses carers accounts of how nighttime (in)continence-related support had ultimately impacted on their ability to sustain caregiving at home. Carers described needing to wake up more frequently to assist with toilet use, leading to their own sleep becoming fragmented. Such sleep disruptions reportedly contributed to feelings of distress, dysregulated routines, and daytime fatigue. Together, the challenges of aiding with incontinence, sleep loss, and the reduced ability to engage with waking activities contributed to decisions around seeking external support:

I realised that I was actually toileting him and keeping him regular, and all that sort of thing… and it wasn’t until he actually had nocturnal incontinence that I thought, ‘No, I can’t go on much longer’. But we got incontinence products and we did everything possible, but he still rather took the product off and still decided that the bed was the best place. And that’s when I really said ‘this is it’ (Hannah, spouse, 76 years).

Similarly, care recipients who were cognisant of their situation indicated that such symptoms also affected them to the point that they felt maintaining the care situation within the home was no longer appropriate:

He was so anxious. He wasn’t sleeping. He was. He was incontinent. He was urinating everywhere. Yeah. So that’s when he said, he said ‘Go and look for homes’. (Nathalie, spouse, 64 years)

Accounts such as Nathalie’s highlight the usefulness of knowing the care recipient’s wishes prior to becoming severely cognitively impaired. For Nathalie, knowing that becoming incontinent was a significant concern for her husband helped validate their decisions around movement to residential care when the time came.

“What a Relief”

This final narrative represents the carers expressions of relief concerning how, in the present day (post transition to aged residential care), their responsibilities had been alleviated and sleep somewhat restored. Carers noted that, with the cessation of constant vigilance and urgent levels of care assistance overnight, they felt improvements in their own sleep and feelings of rest and rejuvenation. For example, when asked how his sleep was after his wife moved into residential care, Harry (81 years) responded:

[I wasn’t] waking up in the nighttime thinking - 'Right. Oh quick, I've gotta jump out of bed and get her to the toilet', or whatever. Yes, no, it did improve.

Harry summarises a common sense of freedom and autonomy that was associated with regaining some form of normality in terms of their sleep patterns and routines as well as waking activities that had been difficult to maintain while providing nighttime continence-related support.

For many such relief was often accompanied by profound feelings of guilt, particularly if they had lead responsibilities in the decision-making processes around formal care. Furthermore, feelings of grief often accompanied the loss of the care recipient as a companion at home or bed/room partner. For some, sleep-related disturbances were noted to persist and were associated with such loss as well as the long-term impacts of irregular routines, overwhelming responsibilities, and/or poor mood.

Connecting with those who shared similar experiences was identified as providing some solace:

I’ve joined everything. I go to the coffee tomorrow morning, is the [x] coffee club. And that’s for people who’ve put their care recipients in homes… yes so that’s really good because although we don’t have to worry now about what pads they’re using or if the beds wet, what a relief, [but] we still have emotional problems, you know? (Sonia, souse, 68 years)

Sonia's extraxt illustrates a common sense of relief and freedom associated with no longer having to manage nocturnal incontinence. But also how the emotional effect of caregiving endured and the invaluable support that can come from connecting with others who have shared similar experiences. The opportunity to observe the progression of incontinence and sleep disturbances for the person with dementia after they had moved into residential care also helped carers to come to terms with the situation. For example, Nathalie (spouse, 64 years) noted:

God, I’m so glad I did [look for residential care homes]. Because like, in the home, he was just even worse. They, they, yeah…. All they could have in his bedroom was a bed. Because he urinated in drawers. He urinated up the wall. He urinated over the chairs.

Such observations allowed for carers to reflect on the tremendous support that they had provided, as well as reflecting on the impact if they had continued to try and provide support at home.

Overall, this narrative highlights how, while there was an overwhelming sense of relief after relinquishing home-based care, carers still had to navigate feelings of guilt and grief in the adaptation to a new reality after the person with dementia moved into formal residential care.

Discussion

This research explored how promoting continence or managing incontinence affects unpaid carers in terms of sleep disruptions and subsequent waking wellbeing. This is among the first research explicitly highlighting this unique (often overlooked) aspect of sleep disturbances. Findings will therefore inform research and clinical agendas with regards to supporting sleep health and dementia care.

The open-ended and retrospective nature of the data used here provided a platform for carers to reflect upon sleep-related changes across the trajectory of dementia. A general increased frequency of nighttime toileting needs was noted with ageing. But also becoming more problematic with the progression of dementia. Growing needs to use the toilet at night align with pathological changes with ageing such as altered kidney functioning as well as the side effects of several medications (Nazarko, 2019). Older carers recognised such changes in themselves and therefore similar issues were presented as easy to accept among their care recipient’s needs. In contrast, some reported that, as dementia progressed, matters concerning toilet use and (in)continence occurred with greater frequency and severity than was considered within the norm for healthy ageing. Much of this was related to exacerbated needs around toilet use with dementia but also confused awakenings, navigating to the bathroom, and/or or self-managing clothing and self-hygiene at night. Incontinence has been documented elsewhere and considered a consequence of the somatic and metabolic changes that come with cognitive impairment (Dyer et al., 2022). But the personal lived experience has seldom been highlighted, making the narratives reported here unique.

Carers noted that promoting continence or managing incontinence at night often led to considerable sleep disruptions for themselves - subsequently affected their waking wellbeing and coping with the overall caregiving situation. Some of the carers' key concerns related to being woken multiple times during the night; feeling they were sleeping on standby to assist their care recipients; and a general lack of restorative sleep. While such themes have been presented elsewhere (Gibson et al., 2020), the present analyses represent the distinct impacts that supporting continence or managing incontinence can have on the sleep of both parties. Moreover, the challenges faced in successfully seeking advice and being able to manage, reduce, or contain incontinence were also illustrated; reinforcing arguments that greater knowledge and support services are required for aged and dementia care, particularly in neglected areas such as sleep and continence-related support (Talley et al., 2021).

Comments of promoting continence or managing incontinence were represented here in unsolicited form. Previous research identifies such topics as somewhat taboo (Wagg, 2018) and related to feeling a loss of dignity and shame amongst carers and care recipients, particularly among those in spousal relationships (Drennan et al., 2011). Such social stigma has been noted as negatively affecting the timely assessment and management of such issues (Bostock & Kralik, 2006). That this topic was raised unprompted and spontaneously by so many carers within the present sleep research is notable. This may be associated with the postal survey being anonymous as well as open nature of the one-on-one follow-up interviews, both providing low risk forums for sharing compared to other research methods.

Stress is a common experience reported by informal carers (Lindt et al., 2020). Here, promoting continence or managing incontinence at night as well as recovery from such episodes were described as key sources of sleep disturbance and stress. While there was some mention of medications aiding such issues; these were not reportedly prescribed or used routinely for either continence or sleep issues. This aligns with movements away from sedating medications for managing symptoms of dementia (Sawan et al., 2021) as well as the disinclination to medicalise issues concerning sleep (Crestani et al., 2022; Williams et al., 2008).

Carers described the coping strategies they used including planned toilet trips in line with their own sleep routine and needs. Such practices are akin to parenting, in that the carer pre-emptively rouses the care recipient, encouraging them to use the toilet in a bid to help reduce the likelihood of them needing to go later in the night and waking others up for support (Butler, 2004). These strategic practices have the objective of preserving carers sleep and reducing domestic labour in the night. It also aligns with the dual identities associated with ‘vulnerable sleepers’ versus ‘active guardians’, highlighted elsewhere (Gibson et al., 2022). However, such practices also have the potential of inadvertently alerting the care recipient if woken mid sleep cycle which could impact on their ability to easily return to sleep, thus contributing to issues of sleep loss. Furthermore, if toileting needs are affiliated with cognition rather than genuine elimination needs, such practices may have limited effect if the care recipient cannot recall if they have already made a toilet trip or not.

It is increasingly highlighted that dementia-related care relies on knowledgeable, experienced staff and services (Franken et al., 2018). Here, feelings of carer stress were apparent and associated with navigating the correct materials, guidance and support from external services in efforts to enable them to best support continence needs at night (particularly concerning sourcing appropriate products for urinary or faecal containment). That it was retrospectively considered “a nightmare” to get appropriate support and products illustrates the stress, frustration, and disbelief that many carers experience in this area. Despite incontinence being an identified consequence of dementia, the support available for people with dementia and their carers living in the community remains lacking with health professionals typically citing a lack of time or specialist knowledge and services as preventing their ability to proactively assist (Bradbury et al., 2024; Murphy et al., 2021). This work adds to this, indicating that if health professionals were better educated and skilled to provide advice in this area, then caregivers could facilitate healthier sleep and waking wellbeing while also feeling better supported in their role.

Limitations

Survey participants and subsequent interviewees were sourced via regional dementia organisations. Some have been identified as less likely to engage with dementia-related organisations, services, or research activities. For example, those with limited access to diagnostic services (for geographical or financial reasons), of Māori or Pacific Island ethnicity, with poorer physical and mental health, and/or who do not identify with ‘dementia’ or ‘carer’ terminology (Beattie et al., 2018; Dudley et al., 2019; Dyall et al., 2014). Such groups were indeed underrepresented in this sample (Gibson & Gander, 2020). Therefore, greater attention and engagement are recommended for broader inclusive research. In particular to New Zealand, a platform for the stories of Māori and Pacific Island families affected by dementia is important because Indigenous cultures have been identified as having a younger onset of dementia and higher incidence of sleep problems as well as different approaches to sleeping, family practices, and dementia care (Dudley et al., 2019; Dyall et al., 2014; Ma’u, Cullum, Cheung, et al., 2021; Paine et al., 2004; Paine et al., 2005). Given these considerations, the present research serves as a foundation for dementia-related (in)continence sleep research. Future works require adapted methodological and interpretation techniques for appropriate research across other social and cultural contexts.

The interviews were retrospective (i.e. conducted after the care recipient had transitioned into residential aged care). It is acknowledged that memories, knowledge, and meanings can change with time and outside of acute periods of stress as well as be susceptible to recall biases (Berntsen et al., 2011; Breheny et al., 2020; Wong & Breheny, 2018). However, the accounts from the long-form retrospective interviews complimented and expanded upon the themes constructed from the survey comments that were collected during active caregiving. Therefore, these accounts are considered a novel reflection of the situation that this sample of carers with shared characteristics experienced.

Summary

This study highlights the need for greater attention to both continence and sleep-related support for people living with dementia and their carers while they live together at home. While respite care services are presented as an option for carers experiencing periods of significant stress; challenges have also been highlighted with regards to accessing and adjusting to using such services (Brandão et al., 2016; Phillipson et al., 2022; Wright et al., 2023). Ultimately, the care recipients of the present interviewees had moved into residential aged care. This allowed for carers reflection and observations, with many acknowledging that they felt they would not have managed with the increasingly exacerbated symptoms. Such observations can help adjust to the changed roles and identities of carers as well as the living situation and progression of disease of the care recipient (Breheny & Stephens, 2012; Wright et al., 2023). However, providing the right kind of home-based assistance for families affected by dementia at the right time remains paramount. These findings are contributing to co-produce a core outcome set of appropriate quality indicators for people living with dementia, their caregivers, and families to enable adequate continence care to be assessed and supported in future interventions (Burholt et al., 2022).

Conclusion

This research illustrates the unique sleep-related experiences in the context of dementia-realated (in)continence care. Through giving voice to the carers’ comments during active caregiving as well as retrospectively, these findings add to a growing body of research incorporating sleep and/or continence into frameworks of dementia care that consider both the person living with dementia and their carer. Recommendations from New Zealand and elsewhere concern a common goal of “living well with dementia” in desired place for as long as feasible and safe (Martyr et al., 2020; Ministry of Health., 2013). The written comments and interview transcripts analysed here summarise the importance of both sleep and continence for living well whilst also highlighting aspects that are often compromised, disrupted, and challenging to manage. Findings from this study will inform person-centred, timely, and appropriate approaches to support families affected by dementia as well as research agendas concerning both sleep and incontinence. This includes prioritising lost sleep among families affected by dementia as well as strategic planning and support services associated with continence.

Author Biographies

Rosemary Gibson is an Associate Professor in Massey University’s School of Psychology and is affiliated with the Health and Ageing Research Team. Rosie was the Principal Investigator on the Health Research Council project: “The Role of Sleep in Healthy Ageing and Living well with Dementia” which supported this study while she was based at the Sleep/Wake Research Centre.

Jaime Fearn holds a masters in psychology from Massey University, Palmerston North. This project provided the basis for Jaime’s thesis. She is now a social worker in the Horowhenua district of New Zealand.

Vanessa Burholt is Co-Director of the University of Auckland’s Centre for Co-Created Ageing Research (CCREATE-AGE) and Honorary Professor of Nursing. Professor Burholt was the Principal Investigator on the Health Research Council project: “Improving continence management for people with dementia in the community” which supported this study.

ORCID iDs

Rosemary Gibson https://orcid.org/0000-0002-3747-095X

Vanessa Burholt https://orcid.org/0000-0002-6789-127X

Ethical Consideration

This work was approved by the New Zealand Health and Disability Ethics Committee (16/CEN/101/AMO1).

Informed Consent

Participants provided informed consent for their written and spoken data to be analysed thematically and quoted anonymously. This was implied by completion and return of the anonymous survey and in written form for interviews.

Data Availability Statement

Data are located in a controlled access repository at Massey University. Data are not publicly available. However, underlying research materials can be accessed, where ethically appropriate, through contacting the corresponding author.*