Occupational Disruption, Loss and Respite: Experiences of Family Carers of People Living with Dementia Accessing Adult Day Services

Abstract

Background

Family carers of people living with dementia experience significant occupational disruption as caregiving responsibilities intensify over time. While adult day services are intended to support ageing in place and reduce caregiver burden, limited research has explored how carers experience occupational participation both within the home and during adult day service utilisation.

Aim

This study explored the occupational participation experiences of family carers of people living with early-stage dementia while providing care at home and during adult day service attendance.

Methods

A qualitative descriptive methodology informed by the Model of Human Occupation was employed. Semi-structured interviews were conducted with 15 family carers of people living with early-stage dementia who attended adult day services in metropolitan Perth, Western Australia. Interviews were audio-recorded, transcribed verbatim and analysed thematically using an iterative inductive approach.

Findings

Three overarching themes were identified: living with relational loss, occupational imbalance and constrained lives, and respite as essential but imperfect support. Carers described profound experiences of grief, changing relationship dynamics, social isolation and reduced independence as dementia progressed. Caregiving responsibilities increasingly constrained opportunities for meaningful occupational participation and negatively affected carers’ physical and emotional wellbeing. Adult day service attendance provided valued respite and emotional relief; however, carers also described stress associated with preparing attendees for services, inconsistent service delivery and limited support availability.

Conclusion

Family carers experienced significant occupational disruption and reduced opportunities for meaningful engagement while supporting a person living with dementia. Adult day services played a critical role in sustaining carers’ capacity to continue caregiving and supporting ageing in place. Findings highlight the importance of flexible respite options, carer-focused supports and occupationally informed community services that address both the practical and emotional dimensions of dementia caregiving.

Keywords

Dementia caregiving; occupational participation; occupational balance; adult day services; respite care; ageing in place; qualitative research; family carers

Introduction

Dementia is one of the leading causes of disability and dependency among older adults globally and represents a growing public health concern as populations age (World Health Organization [WHO], 2023). Current dementia policy frameworks strongly advocate for ageing in place, enabling people living with dementia to remain in their homes and communities for as long as possible (Australian Institute of Health and Welfare [AIHW], 2024). Central to this approach is the substantial contribution of unpaid family carers who provide ongoing physical, emotional, social and supervisory support.

Family caregiving in dementia is frequently associated with cumulative psychological, physical and social burden. Research consistently demonstrates elevated rates of caregiver stress, depression, anxiety, social isolation and declining physical health among family carers of people living with dementia (Brodaty & Donkin, 2022; Feast et al., 2020). As dementia progresses, carers often experience disruption to established routines, roles, relationships and participation in meaningful occupations. Occupational participation, defined as engagement in meaningful daily activities and social roles, is recognised as fundamental to health, identity and wellbeing within occupational science and occupational therapy literature (Hitch et al., 2022).

The progressive cognitive and functional decline associated with dementia may significantly disrupt carers’ occupational balance and autonomy. Many carers report withdrawing from social, leisure and community participation due to caregiving demands and the need for constant supervision of the person living with dementia (Larkin & Milne, 2021). Consequently, carers may experience occupational imbalance, occupational deprivation and diminished opportunities for self-care and personal fulfilment.

In addition to practical caregiving demands, carers frequently describe experiences of grief and relational loss as the person living with dementia changes over time. Ambiguous loss theory provides a useful lens through which to understand these experiences, as carers may perceive their family member as physically present but psychologically altered through cognitive decline (Boss, 2019). Feelings of grief, frustration, loneliness and emotional exhaustion are common as carers adjust to evolving relationship dynamics and increased caregiving responsibilities.

Adult day services have been identified as an important community-based support for both people living with dementia and their carers. These services provide opportunities for structured activity, social engagement and cognitive stimulation for attendees while simultaneously offering carers temporary respite from caregiving demands (Gaugler et al., 2021). Previous studies suggest that respite services may reduce caregiver stress, support wellbeing and delay admission into residential aged care (Liu et al., 2023). However, carers also report challenges associated with accessing and coordinating respite services, including transport issues, service inflexibility and emotional strain associated with preparing attendees for attendance.

Although there is a growing body of literature exploring caregiver burden and dementia caregiving, fewer studies have specifically examined caregiving through the lens of occupational participation. Limited research has also explored how adult day service attendance shapes carers’ opportunities for occupational engagement, social participation and occupational balance.

This study therefore aimed to explore the occupational participation experiences of family carers of people living with early-stage dementia while providing care at home and during adult day service attendance.

Methods

Design

A qualitative descriptive methodology was used to explore the lived experiences of family carers supporting people living with early-stage dementia. Qualitative methods were selected as they enabled in-depth exploration of carers’ perceptions, meanings and experiences related to occupational participation.

The Model of Human Occupation (MOHO) informed the study framework and interview development. MOHO emphasises the interaction between volition, habituation, performance capacity and environmental influences on occupational participation (Kielhofner, 2008).

Participants and Recruitment

A purposive sample of 15 family carers was recruited through eight adult day service providers located across metropolitan Perth, Western Australia. Participants were eligible if they:

• were aged 50 years or older;

  
  

• spoke English;

  
  

• lived with and provided care for a person living with early-stage dementia; and

  
  

• supported a family member attending an adult day service for at least six months.

  
  

Participants included 10 female carers and five male carers aged between 62 and 86 years. Most participants were spouses of the person living with dementia, while one participant was an adult child and one was a niece.

Data Collection

Semi-structured interviews were conducted either in participants’ homes or at another location of their choice. Interviews explored participants’ occupational participation experiences, caregiving routines, social participation, leisure engagement and perceptions of adult day services.

Interviews were audio-recorded and ranged from 60 to 90 minutes in duration. Field notes and reflective journalling were maintained throughout data collection to support contextual understanding and reflexivity.

Data Analysis

Interview data were transcribed verbatim and analysed thematically using an iterative inductive process. Coding involved repeated reading of transcripts, identification of meaningful units of text and development of categories and themes.

NVivo qualitative data analysis software supported data management and organisation. Themes were reviewed collaboratively with experienced qualitative researchers to strengthen analytical rigour and trustworthiness.

Rigour

Trustworthiness was enhanced through member checking, reflexive journalling, peer debriefing and maintenance of an audit trail. Credibility, dependability, confirmability and transferability were addressed throughout the research process in accordance with established qualitative research standards (Lincoln & Guba, 1985).

Ethics

Ethics approval was obtained from the Edith Cowan University Human Research Ethics Committee. All participants provided written informed consent prior to participation. Pseudonyms were used to protect confidentiality.

Findings

Three interconnected themes were identified from the interview data:

1. Living with relational loss

   
   

2. Occupational imbalance and constrained lives

   
   

3. Adult day services as essential but imperfect respite

   
   

Theme 1: Living With Relational Loss

Participants described profound experiences of grief and relational change as dementia progressed. Many carers spoke about losing companionship, emotional reciprocity and shared routines with their spouse or family member.

One participant reflected:

“He is there but he is not there anymore. I miss him terribly.” (Alida)

Carers described witnessing progressive changes in personality, communication and social interaction, resulting in feelings of sadness, loneliness and emotional exhaustion. Several participants discussed the emotional labour involved in continually adapting to changing behaviours and cognitive decline.

For some carers, feelings of frustration and guilt emerged alongside grief. Participants frequently described losing patience while managing repetitive questioning, supervision needs and increasing dependence.

Social relationships were also disrupted. Several carers reported reduced contact with friends and family due to stigma, lack of understanding or withdrawal of informal support networks.

One participant explained:

“People stop inviting you out because they don’t understand dementia.” (Mervyn)

Others described the emotional pain associated with feeling unsupported by adult children or extended family members.

Theme 2: Occupational Imbalance and Constrained Lives

Caregiving responsibilities substantially altered participants’ routines, habits and opportunities for occupational participation. Carers frequently prioritised the needs of the person living with dementia above their own wellbeing.

Participants described their caregiving role as constant and all-consuming. Leisure participation, social activities, exercise and independent pursuits were often reduced or abandoned.

One participant stated:

“I can’t go anywhere without organising everything first. Even having coffee with a friend becomes difficult.” (Larissa)

Carers described experiencing significant occupational imbalance as daily life became dominated by supervision, household tasks, transport, appointments and emotional caregiving.

Several participants also reported declining physical health, fatigue and anxiety associated with continuous caregiving responsibilities. Sleep disruption was common among carers whose family member wandered at night or required supervision.

Feelings of restricted freedom and reduced autonomy were frequently discussed. Despite these challenges, many carers expressed a strong sense of commitment, obligation and loyalty toward their spouse or family member.

Theme 3: Adult Day Services as Essential but Imperfect Respite

Adult day services were viewed as highly valuable sources of respite and emotional relief. Participants consistently described the services as essential in enabling them to continue caring at home.

One participant explained:

“I need that breathing space. Without it, I couldn’t keep going.” (Dennis)

Although respite time was appreciated, carers often used this time to complete domestic tasks, shopping, appointments and administrative responsibilities rather than engaging in restorative leisure or social activities.

Participants also described stress associated with preparing attendees for service attendance, coordinating transport and adapting household routines to service schedules.

Several carers highlighted inconsistencies in communication and service delivery. Some participants desired greater flexibility, increased service hours and more carer-focused support programs.

Despite these concerns, carers emphasised that adult day services delayed the need for residential aged care placement and supported their capacity to continue caregiving.

Discussion

This study explored the occupational participation experiences of family carers supporting people living with early-stage dementia while providing care at home and during adult day service attendance. Findings demonstrate the substantial occupational, emotional and social impact of dementia caregiving and reinforce the critical role of respite services in supporting ageing in place.

Participants described significant relational loss as dementia progressed, consistent with literature describing caregiving as an experience of ambiguous loss and chronic grief (Boss, 2019). Carers frequently described the emotional pain associated with losing companionship, reciprocity and shared routines while their family member remained physically present. These findings align with previous studies demonstrating that dementia caregiving involves ongoing psychological adjustment and identity change (Larkin & Milne, 2021).

Occupational disruption emerged strongly across participant narratives. Carers described progressively constrained opportunities for meaningful engagement, leisure participation and social connection as caregiving responsibilities intensified. These findings reflect occupational science concepts of occupational imbalance and occupational deprivation, whereby individuals experience restricted opportunities for participation in meaningful occupations due to external demands and contextual constraints (Hitch et al., 2022).

Consistent with previous caregiving research, participants reported declining physical and emotional wellbeing, social isolation and reduced personal autonomy (Brodaty & Donkin, 2022). Many carers prioritised caregiving responsibilities above their own health and wellbeing needs, contributing to fatigue, stress and emotional exhaustion.

Adult day services were perceived as essential supports that enabled carers to sustain their caregiving role. Participants valued the temporary relief, emotional reassurance and opportunity to complete daily tasks while attendees participated in structured activities. These findings support previous evidence that respite services may reduce caregiver burden and delay institutionalisation (Gaugler et al., 2021).

However, the findings also highlight limitations within current respite models. Participants described stress associated with transport arrangements, service inflexibility and limited carer-focused support. Importantly, respite time was often consumed by domestic responsibilities rather than restorative or meaningful occupational participation.

The findings suggest that community-based dementia services should adopt more holistic, occupation-focused approaches that address both the practical and emotional needs of carers. Occupational therapists working within dementia care settings are well positioned to support carers in maintaining occupational balance, adapting routines and identifying meaningful opportunities for participation and self-care.

Implications for Practice

Findings from this study have several implications for occupational therapy practice, dementia services and policy development.

• Adult day services should incorporate more flexible respite models responsive to carers’ changing needs.

  
  

• Carer wellbeing should be routinely assessed alongside the needs of the person living with dementia.

  
  

• Occupational therapists should support carers to maintain occupational balance and participation in meaningful activities.

  
  

• Community-based dementia services should recognise the emotional labour and relational loss experienced by carers.

  
  

• Increased funding for respite services may help delay residential aged care placement and support ageing in place.

  
  

Limitations

This study involved a relatively small sample recruited from metropolitan adult day services and therefore may not reflect the experiences of carers in rural or culturally diverse settings. Most participants were spousal carers, limiting representation of other caregiving relationships. Additionally, participants were already accessing respite services, meaning the experiences of carers unable to access services were not captured.

Conclusion

Family carers supporting people living with dementia experience substantial occupational disruption, emotional strain and reduced opportunities for meaningful participation. Adult day services provide essential respite that supports carers’ capacity to continue caregiving and enables ageing in place. However, carers require more flexible, responsive and occupation-focused support systems that recognise the complex emotional and practical realities of dementia caregiving.

Future research should continue exploring occupational participation among diverse caregiving populations and evaluate models of respite care that better support carers’ wellbeing, occupational balance and social connectedness.

Declarations

Ethics Approval and Consent to Participate

Ethics approval for this study was obtained from the Edith Cowan University Human Research Ethics Committee. All participants provided written informed consent prior to participation.

Consent for Publication

All participants provided consent for de-identified quotations to be used in publications arising from this study.

Conflict of Interest

The authors declare no conflict of interest.

Funding

No external funding was received for this research.

Author Contributions

Janice du Preez conceptualised the study, conducted data collection and analysis, and prepared the manuscript. Jeannine Millsteed, Ruth Marquis and Janet Richmond contributed to study supervision, methodological guidance and manuscript review.

Acknowledgements

The authors sincerely thank the family carers who generously shared their experiences and the adult day service providers who supported participant recruitment.

References

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