Penny Hibberd Room Lf12 Dementia Services Development Centre Canterbury Christ Church University North Holmes Road Canterbury Kent CT1 1QU, UK Telephone: 01227 782602 E-mail: email@example.com
Aim. To capture the meaning and context of how carers adapt and develop their relationships throughout their caring role.
Background. Family carers play a pivotal role in supporting and caring for a person living with dementia at home. To date, the majority of social research on carers has focussed upon the stress and burden that such demands evoke, and limited attention has been paid to locating the carer’s own construction of their role with a relationship-centred approach. This paper attempts to build on this emerging understanding.
Design. A participative, qualitative study using photographs and supportive narratives to contextualise and map carer’s experiences of caring for a person with dementia. The study was conducted in one area of South East England, UK with all necessary ethical permission to conduct the study obtained prior to data collection.
Method. Data was obtained between May–June 2008 with nine carers recruited from a not for profit organisation based in the UK. Photographs were taken by participants using a 27-print disposable camera with supporting written narratives provided on six photographs that participants selected to best represent their caring role and relationship. These photographs and supporting text were then shared with other participants in a focus group. Through this process, participants were helped to sort and group the data into narrative themes.
Results. From this collaborative process, the group identified four types of caring relationships, these were: recognising (1); transforming (2); stabilising (3); and ‘moving on’ (4). Photographs and the supporting narratives were used to illustrate each type of relationship that helped to give meaning and shape to everyday life.
Conclusion. The four types of caring relationships help nurses and other service providers to understand how carers of people with dementia construct and manage their day-to-day life. Recognition of a carer’s personhood needs to be acknowledged in order to promote and support their role throughout the caring trajectory.
Relevance to clinical practice. Recognition of the knowledge and skills held by carers of people with dementia can help inform professional decision-making and provide a platform for practice intervention.
The term ‘dementia’ covers a number of symptoms accompanying certain diseases or disorders, resulting in deterioration of intellectual functioning, i.e., in memory, perception and routine. The most commonly occurring dementia in older and younger people is Alzheimer’s disease (Alzheimer’s Society, 2007) and there are many different causes of dementia which vary in their presentation and progression. One in five people aged over 80 have a form of dementia (Alzheimer’s Society, 2007) and it is estimated that there are now 683 597 people with dementia in the United Kingdom (UK). This is representative of one person in every 88 – or 11%– of the entire UK population. The total number of people with dementia in the UK is forecast to rise to 940 110 by 2021 and 1 735 087 by 2051, an increase of 38% over the next 15 years and 154% over the next 45 years (Alzheimer’s Society, 2007). Worldwide the prevalence of those living with a dementia is estimated to be 27·7 million people (Wimo et al. 2006), with this figure set to rise substantially in the next 40 years as the global population ages.
Over recent years there has been a wealth of publications both internationally and in the UK that have driven forward the policy, practice and education agenda in the care of people with dementia and their families (Alzheimer’s Society, 2007; Audit Commission 2000, 2002; Department of Health (DH), 2001; 2005a,b; 2007). In England, the most recent addition is the National Dementia Strategy (DH 2009) with its aim of improvement for three identifiable areas of dementia care, namely: early intervention; improving care; and education and training. Similarly, a National Framework for Dementia was developed in Australia in 2006 with five key priorities for action: care and support; access and equality; information and education; research and workforce and training (Australian Government, 2006; and see also: Alzheimer’s Australia 2007). Whilst such a wealth of policy attention is welcome, such guidance requires application to practice in order to personalise care and optimise the quality of life for people with dementia, family carers and their support network. This article takes as its starting point the experience of caring at home for a person with dementia within the context of an existing relationship (Aneshensel et al. 1995, Alzheimer’s Society, 2007).
A significant contribution to advancing understanding about the meaning of care from the experiences of carers of people with dementia in the community emerged from a study conducted in the United States by Hirschfield (1981, 1983). In this study, 30 caregivers of people with dementia were interviewed (the sample also including unstructured interviews with seven people with mild cognitive impairment). Hirschfeld (1983) developed the concept of ‘mutuality’ as ‘the most important variable’ (p. 26) to explain the social relationship between families and the person with dementia. In outlining the properties of ‘mutuality’, Hirschfeld (1983 p. 26) suggested that:
... it grew out of the caregiver’s ability to find gratification in the relationship with the impaired person and meaning from the caregiving situation. Another important component to mutuality was the caregiver’s ability to perceive the impaired person as reciprocating by virtue of his/her existence.
Thus mutuality grew out of the carer’s ability to find meaning, gratification and reciprocity in their caregiving role. According to Hirschfeld (1983) mutuality was seen as existing within four parameters:
1 High mutuality from within the relationship (internally reinforced mutuality);
2 High mutuality due to circumstances (externally reinforced mutuality);
3 Low mutuality;
4 No mutuality survived.
Feelings of low mutuality were synonymous with poor adjustment within the family and negative feelings towards the person with dementia. This negative adjustment was as likely to be present in those caring for a person with mild dementia as those caring in later stages. Hirschfeld (1983) outlined three other variables which influenced the planned continuation of home care, these being: management ability; morale; and tension. Interestingly, the operational definition of tension included the feeling of ‘being tied down’, and this was conceptualised as the carer’s restricted opportunity for free time and lack of individual privacy. Indeed, it was the combination of low/no mutuality coupled with ‘severe tension’ that Hirschfeld (1983) believed to be the driving force for carers considering the person with dementia’s admission into care, and thus predicting the breakdown of home care (for a later validation of these findings, see Aneshensel et al. 1995). Recently, Tanji et al. (2008) have built upon this seminal work and defined mutuality as the quality of interaction or reciprocity of sentiment in a relationship.
Keady and Nolan (2003) explored how people with dementia and family carers, who were in the early stages of coming to terms with a diagnosis of dementia, coped with its challenges. From this approach, Keady and Nolan (2003) identified three types of caring relationships: working together; working apart; and working alone, and it was where families worked together where the ‘best’ outcomes in terms of caring satisfaction and feelings of well-being were found. Similar experiences were later reported by Hellstrom et al. (2005) who described couple-based relationships in Sweden where a diagnosis of dementia can help the couple makes sense of past events and restore meaning and purpose to their lives.
The reported study adds to the body of knowledge on the meaning and well-being of carers in caring for a person with dementia and these findings are an early phase of data collection from a larger three-year study about experiences of carers for people with dementia (Hibberd et al. 2008).
The study provided an opportunity for family carers of people with dementia to talk about their lives and experiences and to give a voice to the value, carer expertise and the ‘best of’ experiences when describing how they manage their relationships within a caring role. The overall aims of the study were to:
• Map the narratives of carers of people with dementia as they manage changing relationships when adjusting and managing to a caring role.
• Identify how carer’s relationships support the coping and management of change throughout the caring trajectory.
• Explore what strategies carers use to support those relationships.
• Recommend developments to practice based on the study findings.
A qualitative approach was adopted that incorporated visual methodology (Prosser & Loxley 2007) as a central component of data collection and analysis. Whilst the expression of feelings and emotions through spoken words remains the most common form of describing personal and social phenomena (Harrison 2002), over the last decade there has been a growth in the use of visual methodology to complement spoken language (Prosser & Loxley 2007). For example, Young and Barrett (2001) suggested that by using pictures with children the visual data acted as a prompt to the children’s every day life enabling them to reflect on their physical environment. Moreover, these authors reported that the technique allowed the researchers to not only generate data, but to also engage more fully with participants owing to the stimulus of visual cues. In dementia care, it has been found that carers’ photographs can help to visually represent a meaning to life that is not so easily communicated through words alone, as recent illustrations within Huntington’s disease (Aubeeluck & Buchanan 2006) and HiV-dementia (Kelly 2008) reveal. However, whilst a photograph tells its own story, it is the narrator’s communicated interpretation of that image that is crucial to a shared understanding and meaning-making.
The study was conducted in a community area of South East England. Part one (photography and narrative) explored the values and well being of a carer informing the development of part two (focus group) which used a collaborative approach with participants to assist with data sorting and analysis.
The inclusion criteria for the study were that: the carer had to be caring for, or have cared for, a person with a diagnosis of dementia; should live in the South East of England; and have had contact with an Admiral Nurse (see Box 1). Twelve carers were invited to participate via a not for profit organisation that advocates for carer’s needs. Carers were contacted by the co-ordinator of or the not for profit organisation and invited to volunteer to participate following an informal discussion. They were then given written information about the study and with their consent contacted by the lead author of this paper. Out of the 12 carers who initially expressed an interest, nine gave written consent to take part, two decided not to participate after reading the information sheets, and one withdrew after the preliminary discussion with the coordinator of the not for profit organisation. Table 1 describes the participants; all names have been changed to protect anonymity and the coding using letters and numbers have remained at the participant’s request.
Table 1. Sampling frame
Type of dementia
Type of caring environment
Works full time
Works part time
Own home/care home
Gave up work to care
The photographs and supporting narratives were developed over a period of several months following informal contact with the researcher and written guidelines on how to start the data collection process and which were in line with the aims of the study. These data are reported in Table 2. Each participant was supplied with a disposable camera with 27 prints. The cameras were returned to the lead researcher for developing and participants were then asked to select six photographs which best represented their caring lives and relationships and write a narrative to support each one; the number 6 was chosen for pragmatic reasons in that in the focus group that followed, all members of the group would subsequently have time to share and communicate this number of prints with their fellow participants. The lead researcher was available to listen and audio record the narratives for carers who preferred not to write them. These six photographs and the supporting narrative were then returned to the lead researcher to plan the focus group (phase 2).
Table 2. Overview of data collection
Informal telephone contact/letter with guidance notes January 2008
Written guidance & camera sent for photography and narrative
Written receipt of photographs and narrative from carer May/June 2007
Focus group to develop provocative propositions 25/06/2007
Declined focus group (on holiday)
Declined focus group (working)
This methodological approach encouraged the developing and refining of an affirmative view of the participant’s relationships as a carer with the person with dementia and wider circle of family, friends and others (Reed 2007). In total, data was gathered over a period of eight months with nine carers.
Process of analysis
Data in this study was co-constructed with participants within the context of focus group work with the photographs and supporting narratives being used to uncover meaning and a shared understanding of caring relationships. This was approached through each participant taking a turn to share their six ‘best representing’ photographs and supporting narratives with the group. At the end of the presentations, the group discussed the data with a designated note taker writing key words and phrases that summarised the key messages of each presentation. Once all the participants had shared their ‘best’ photographs, this list was examined by the group and distilled into the key messages. Through this interpretive and co-constructed process, four types of caring relationships emerged and these were agreed as: recognising (1); transforming (2); stabilising (3); and ‘moving on’ (4). Fig. 1 displays this overview in diagrammatic form. The carers then placed their (individual) photographs under each of the four headings (Table 3).
Table 3. Caring relationships: The ebb and flow of relationships during the caregiving trajectory
It is this caring relationship theme → illustrative photograph → supporting narrative process that will be returned to in the findings section.
Approval to conduct the study was obtained from National Research Ethics and the appropriate research and development governance department from the local NHS Trust where the Admiral Nurses were based. All participants received written information explaining the purpose of the study and what their involvement would entail. They were assured that information gathered during the study would be stored securely. Participants provided signed consent after engaging in written information and an informal telephone interview. Following the time lapse between the photography, supporting narrative and the focus group, consent was reaffirmed (verbally) before and after the focus group. Because of the emotional and sensitive nature of the data collection, care was taken to identify the most appropriate methods of data collection, timing of data collection and venue to involve participants. All carers were assured anonymity and the pseudonyms used in this article are the choice of participants.
Caring relationship 1: recognising
Within the context of caring, ‘recognising’ was described as an ‘intimate’ and ‘special’ feature to each caring relationship. Sometimes this recognising was found in everyday activities and in moments of time when an immediate and emotional connection was made. In the first of her six photographs (displayed in Fig 1), carer A4 illustrates this emotional connection with her husband and the love she retains for him:
This is a picture of tenderness and I like that. It represents the best and most immediate means of communication left to us: touch. The feelings of well-being come from the closeness we seem to achieve through holding/stroking hands. Whenever I have quiet moment I sit close to L and take his hand in my hand. It’s a calm spiritual way of saying ‘Hello, I am here for you and you for me’. (Supporting Narrative - Carer A4: Photograph 1/6)
Whilst times have been extremely difficult for carer A4, both practically and emotionally since the onset of her husband’s dementia, (her) photograph two displays her caring relationship in a positive way (Fig. 2):
This picture reminds me of better days even though we were already struggling with dementia. It brings back memories of when each morning L (who was still walking at the time) greeted himself in the mirror with a ‘hello’, a big grin and a look of satisfaction as he left the bathroom on his way to the kitchen to have breakfast. His ritual was a sign of some sense of identity and or of self, comforting when I thought of his dementia. It is good for me to think that this mirror gave him pleasure for some considerable time. It also brings a smile to my face every time I think about it, for L had been very vain pre-Alzheimer’s; I used to tease him because of it. During those months post-diagnosis his own image enthralled him, and became for him a good tool of self recognition and self appreciation. (Supporting Narrative - Carer A4: Photograph 2/6)
Some carers suggested that ‘recognising’ also opened up the close spousal caring relationship to others in the family group. Despite the tensions this can cause in juggling the different relationships and caring beliefs found in families, the person with dementia was seen as playing a central role in family life; indeed, carer’s strove to protect and support this place. This was visually illustrated by Carer A3 (Fig. 3):
My dad says he enjoys walking though he claims he doesn’t walk so much these days. I think that what he likes best is being with family and me in particular. He also takes great joy in just watching my daughter grow up. He feels safe and memory can be ‘managed’ in a collective way. I can fill in the gaps when he forgets. (Supporting Narrative - Carer A3: Photograph 3/6)
Recognising the existing relationship between the carer and person with dementia was pivotal to explaining how carers managed their ongoing role. Times when recognition was difficult were varied and included during the process of assessment and diagnosis and at times of managing difficult or changing symptoms of dementia.
Caring relationship 2: transforming
As the reality of living with a person with dementia dawned on the carer/family, lives had to become flexible to bend and adapt to new patterns of thoughts, behaviour and actions. Carers christened this process ‘transforming’ and this process was seen throughout the caring trajectory as these next few examples illustrate (Fig. 4):
I chose this photo because it is a picture my mum painted in the art therapy group at her home at the end of her first year there. The home organised for all the paintings to be framed and put on display in the dining room and a photographer from the local paper came and took photos of the mini exhibition. A photo of my daughter and my mum holding her painting was printed in the local newspaper and made everybody very proud. I think it helped us all to see that even though my mum was not well she was still able to try new things and to participate in group activities. As her illness has progressed and she is no longer able to take part in such activities, it has made me realise how important it is for people with dementia to be stimulated and to enjoy new hobbies whilst they are still able. (Supporting Narrative - Carer A7: Photograph 3/6)
Sometimes the relationships were transformed by new people being introduced into carer’s lives, as carer A2 demonstrates (Fig. 5):
The builder who, with his team, represent care and companionship over the last six years whilst making the house comfortable for our retirement. The builder working outside our house so that the sawdust did not go all over the carpets. This is what builders do in this area because the Victorian houses have been divided into flats with little space for their equipment. We had a programme of refurbishment to make our house comfortable for retirement. The builder’s team was very patient and became friends. We were both interested in their progress. They started in 2001 and had not finished when C died in 2006. (Carer A2: Photograph 6/6)
Transitions in care are usually projected as a difficult time in caring relationships (Zarit & Zarit 1982,Zarit et al. 1985). However, within this study, carers were keen to project a more positive image in that their own lives and relationships to the person with dementia can be transformed through a major life transition, such as a move to a care home. Carer A6 movingly shares this experience (Fig. 6):
This is one of the front of the Nursing Home, where P spent the last eleven months of his life. Everything about it was of tremendous comfort to me and the family. He was cared for so lovingly by a caring staff who were led by a dedicated Manager. When I visited daily, everyone was so warm and kind, as if we were wrapped in a ‘comfort blanket’. (Supporting narrative - Carer A6: Photograph 2/6)
Whilst lives were in a ready state of transforming, it was the search for stability that carers believed was the ‘best place to be’ (focus group quote).
Caring relationship 3: stabilising
The stabilising of relationships was arrived at different times and whilst it was not necessarily a permanent process, it could be on-going for some considerable time. Within the focus group and their narrative accounts, carers visually represented and talked about ways of developing and maturing the relationship with the person with dementia and others. For example, carer A4 shared the time her and her husband became flat bound and they found ways of connecting to people and the things around them (Fig. 7):
It is not just a window it is our window onto the outside world, now that we are flat bound. It is our source of light, and sunshine when the sun is out, for the window faces south. Through it, we see the world as it passes us by; we get to know a little bit about the people living opposite, without actually knowing them. For example, there is a family in the house directly facing us. When we moved here seven years ago their two boys were young children. We have seen them grow into the teenagers they now are. The tree outside is very beautiful, especially when in leaf, and quite a number of birds come to rest in its shade in the summer. We also benefit from its shade during the hottest months. We feel connected to nature through this tree. (Supporting Narrative - Carer A4: Photograph 6/6)
Finding ways for the relationships to the person with dementia to be meaningful and fulfilling is central to stabilising. Practical ways of involving the person with dementia so that they felt a sense of security, achievement and safety was important to each participant, as Carer A3 illustrates through this photograph and supporting narrative (Fig. 8):
My dad enjoys playing games with my daughter. He here plays noughts and crosses, where he is more successful than playing a game of cards, where his success tends to be from pure luck. He also sits with her as she plays computer games. (Supporting Narrative - Carer A3: Photograph 2/6)
Other carers showed how finding a practical solution to difficult symptoms can achieve stability within their lives and relationships, a point simply, but poignantly, made by carer A6 (Fig. 9):
The Fish Finger. At one time in his illness, while still at home, P’s diet became very restricted in content and equally at certain definite times. He would eat fish fingers at supper time and I was most grateful that there was always a supply available. (Supporting Narrative - Carer A6: Photograph 1/6)
Stability was also important for extended members of the family, a point carer A4 was particularly keen to capture (Fig. 10):
I chose this picture for the life energy it portrays in the shape of three of our young grandchildren clustering around L. It illustrates that despite the fracturing effect of Alzheimer’s upon all of our lives we are still a family where affection and closeness matters. Seeing the grandchildren I see all that is good about life and the future of course. At the same time I am aware of how rooted they are in our lives and that those connections are healthy and strong. (Supporting Narrative - Carer A4: Photograph 5/6)
Finding ways to create, maintain and sustain stability within the family care of people with dementia was highlighted by all participants as crucial indicators in allowing care to happen on a day-by-day, hour-by-hour basis. Thus, the creation of routines and ways to keep the person with dementia involved in lives and relationships, for example, were important markers in well-being and, arguably, in constructions of ‘successful’ caring at home.
Caring relationship 4: moving on
Developing relationships after the person with dementia has died or is being cared for in a care home environment can be an unsettling time for caring relationships, and one where carers can grieve for their loss and/or the familiarity of caring lives. This is movingly illustrated in the next two photographs and their supporting narratives:
I like this photo of A’s chair which was her favourite. I can often see her sitting there watching the television. It seems so real. (Supporting Narrative - Carer A1: Photograph 1/6); (Fig. 11)
This photo was taken in front of the Turkish Tent in the Park where A’s ashes are scattered. ‘A’ loved the park and at one time used to help as a volunteer. She was enchanted with the view over the lake. (Supporting Narrative - Carer A1: Photograph 3/6); (Fig. 12)
Carers also wanted ‘moving on’ to represent a new life for a loved one who was now living in a care home. Carer A7 best represents this dynamic in the following photograph and supporting narrative (Fig. 13):
I chose this photo of the home in which my mum now lives because it is her home. It took many months of searching for somewhere for my mum to live where I felt she would be happy and with people I thought would look after her needs. Once my mum was settled it removed that constant level of stress I was feeling and allowed me to pick up life with my own family after an incredibly difficult year. It was definitely the right choice for my mum and still is and the staff has managed the changing nature of her dementia with humour and all of the residents are treated with respect. I always know that when I leave my mum she will be well looked after in every respect and that has brought me the most peace of mind. (Supporting Narrative - Carer A7: Photograph 2/6)
Caring is not a static event, but one with constant movement and emotional demands, even after the ‘hands-on’ nature of care has ceased. In many ways, the photographs shared in this theme were amongst the most personal and difficult for carers to discuss and served as a reminder that the person with dementia was very much ‘alive’ and ‘present’ in their thoughts and actions.
This research design contributes towards the development of a new trend in data collection and analysis in qualitative research where visual representations and collaborative approaches define the research experience (Aubeeluck & Buchanan 2006, Hellstrom et al. 2007, Kelly 2008). Indeed, Prosser (2006) states that photographs become an instrument for change because ‘the photo documents are harder ‘facts’ than individual expression’ (p. 247). Asking participants to view their caring lives with an affirmative eye allowed carers to be both participatory and in control of the data collection process. Within the focus group they discussed their findings and made decisions about how the data should be developed into themes in an affirmative way to support the complexities of their caring experience (Reed 2007). On evaluating the process of participation, several carers reflected positive reactions from their experience; for example, carer A2 described her feelings this way: ‘Looking at the positive aspects of my caring made me realise that my experience counted for something ….. and it made me more confident’.
Much of the routine work of health and social care practitioners relies on their skills of observation. Within this study, representations of reality can be difficult to interpret without the meaning of that experience communicated (in this instance) by the carer. For example, within the article, carer’s A4 (2/6) photograph shows an entry door with latches and bolts that could have been interpreted by professional staff as an expression of isolation and of being ‘shut away’ from the wider world. This was far from the case and highlights the importance of gathering biographical information and not making ‘snap judgements’. Arguably, it is for this reason that authors such as Harrison (2002), Chaplin (1994) and Harper (1996) have found the absence of the use of visual methodologies in social research surprising as they unlock private thoughts in a sensitive way.
As this study has demonstrated, people with dementia have a set of existing relationships with family members, friends and their wider social network that require support and recognition. Immediate and extended family members are seen to play a central role in a carer’s life and their role cannot be overlooked when considering the needs of the carer and person with dementia. A family-centred approach is a way of working that has been alluded to but not formally adopted in mental health settings. In 1938 Edgar Doll presented a paper on the benefits of community care for long term mental health patients in France who were being discharged form a mental health institution to the care of ‘foster families’. It was noted that the patients settled well feeling supported in the ‘family unit’. Today we continue to acknowledge that supported care at home is cost effective rather than admitting patients to hospital or long term care settings. Others have followed in Doll’s (1938) footsteps, Coyne (1996) who identifies the origins of family nursing in mental health in the 1970s (Minuchin 1974, Skynner 1976, Epstein et al. 1978). There are also similarities between the use of language (partnership, enabling, negotiation and empowerment) and the field of children’s family nursing where the use is more developed and integrated into practice (Claveirole et al. 2001, Franck & Callery 2004). How we define family is complex as the composition is as diverse as everyone is individual. Claveirole et al. (2001) defines family as:
….consists of two or more individuals joined by affectionate bonds, the influence of which may fluctuate with time and circumstance but which persist through the lifespan. Family membership is mutually defined and includes elements of shared beliefs, emotional, social, physical and economic support. (p. 1142)
As an illustration, in Figs. 3 and 10 the carers visually represent recognition and stability in their relationships. Arguably, ‘family members’ can be those that enter their lives at different junctures and may be for a short while as Fig. 6 and Fig. 7.
Pragmatically, the importance of relationships to finding and maintaining stability in caring lives holds significance to carers. Clarke (1999) operationalised the theory of ‘normalisation’ to explain every day care giving relationships and how they promote stability. Other commentators have since recognised the significance of stability to carers (see for example: Nolan et al. 1996, Sheard 2004). Carers have an unenviable task of striving to maintain. Our findings in this study show that by having family and/or professional support to seek stabilisation of their relationships a process of moving on can be achieved (normalisation) (Clarke 1999). Carers have an unenviable task of striving to maintain stability in their lives and our findings shed light on how they construct and visualize this process. These may seem like small steps but they require recognition and expertise on part of the carer. Carer A4 1/6 illustrates how her intimate relationship with her husband through touch provided a recognition of their relationship. Carer A3 6/6 illustrates with the support of his wider family he is able to achieve a close and stable relationship with his father and A7 3/6 illustrates with a picture her mother painted achieving new skills with the support of care home staff.
Both Nolan et al. 1996 and Sheard 2004 suggest that relationships should be a platform for intervention to be built upon by health and social care workers. Clarke (1999) recognises carer’s expertise and highlights the tension that can exist between carer and professionals who are entering the relationship with different knowledge bases. How professionals work alongside carers to support their work in stabilising their relationships within a caring role is part of the wider part of this study.
Study strengths and limitations
The primary strength of the study is the collaborative and co-constructed nature of the study design and presentation of the findings. This is particularly evident in the data analysis approach where the validity of the four stage ‘living relationships’ model is owned and generated by participants. The representation of such lived experience through photographs and supportive narratives provided an added context for the individual, expression of meaning, a context that requires practitioners to clarify assumptions rather than assume meaning. The study design and its operationalisation also enabled participants to reflect upon their caring role and helped to generate new insights and awareness into their contribution to sustaining stability in their day-to-day life.
Data is collated from one area of the South East England where carers are being supported. As such, the experiences of carers in this study may not be representative of others in a similar situation, or from other cultural backgrounds. Qualitative research does not make claims on the generalisability of findings, however the model presented in this paper held meaning for all participants.
Implications for practice
There are some interesting clues as to how carers construct the meaning of their caring lives both within the presented photographs (and the supporting narratives) and also within the 4-stage model that was co-constructed within the text. The process of caring relationships in a stage of transforming and the search for stability in lives and relationships are important markers in the lives of family carers. Professional care in dementia care could be built around such concepts and, in so doing, speak the same language as those living its meaning. As the findings of this research reveal, carers manage their caring role within the capacity of their own personhood supported by the relationships around them. Although the importance of carer relationships have previously been identified (Nolan et al. 1996, Clarke 1999), how the co-constructed relationships can then be supported. It is therefore important that the significance of timely and appropriate intervention and support for carers of people with dementia is acknowledged. Moreover, the findings have implications to the application of the recent National Dementia Strategy in England (Department of Health 2009) by maintaining the well-being and personhood of carers.
There are a number of key messages that this study has highlighted. First and foremost, the photographs and supporting narratives in this study reveal carers of people with dementia to be extremely insightful, warm, reflective and engaged with the people for whom they care, or for whom they have cared. Carers are people in their own right and their own agency and personhood needs to be acknowledged. A carer of a person with dementia has existing relationships with family members, friends and their wider social network that require support and recognition; this was an extremely strong theme throughout the study. As can be seen from the data, feelings and relationships can be supported and developed throughout and beyond the caring trajectory. Immediate and extended family members were also seen to play a pivotal role in a carer’s life and their role cannot be overlooked when considering the needs of the carer and person with dementia; for instance, carers A3 and A4 describe how the family brought stability to their relationships. Pragmatically, the importance of relationships to finding and maintaining stability in caring lives holds significance to carers and is also recognised by others (see for example: Nolan et al. 1996, Clarke 1999, Sheard 2004) who suggest that family relationships should be a platform for intervention to be built upon by health and social care workers.
Sponsorships and funding
This research study has been sponsored by Northumbria University, UK and funded by the charity for dementia.
We would like to thank the carers who gave their time and energy in participating in this study and to their families and people with dementia who supported them. This study is being sponsored as part of a larger doctoral study by the charity for dementia.
The scope of this paper has not allowed for the inclusion of further data from the larger study.
Study design: PH, JR, JK, BL; data collection and analysis: PH, JK, JR and manuscript preparation: PH, JK, JR, BL.