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Use the + button below other posts to add your own to any column. The newest posts will be at the bottom of the column, so scroll down.

Type what you want and then click outside the box for it to appear on the Padlet. You can 'like' posts by clicking the heart button. You can comment on other people's posts underneath them.

Please ask questions if you're stuck and I'll help. You can always email IDEAL@exeter.ac.uk if you need further help.

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In this column you can introduce yourself. Who are you and why are you interested in rethinking dementia?

Be sure to book for our Being Human event 'Rethinking Dementia' on Thursday 18th November 2021, 7-8pm on Zoom. You can book a free ticket here: https://www.eventbrite.co.uk/e/166141179741

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In this free online interactive event for the Being Human Festival, you'll hear different perspectives on rethinking dementia.

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Use this column to answer Question 1. There are no right or wrong answers!

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Use this column to answer Question 2. There are no right or wrong answers. Feel free to post a drawing if you are an arty person!

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This video is a great starting point to learn new things about dementia. We asked people living with dementia what they would like people to know about it. Here's what they told us.

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Use this column to answer Question 3. You might think of films, books, adverts - the list is endless! We're interested in how people see dementia and where. It could have been a poster at the GP surgery - let us know below.

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I have Alzheimer’s Disease, but I don’t have ‘dementia’ although the world thinks I have. Let me explain:

‘Dementia’ technically is a term for people who have lost independence, who are in the more serious parts of their illness. But it has become a catch all term to cover all stages of progressive brain disease. One that’s widely used and understood.

But I worry that as soon as we say ‘dementia’ we summon to mind the high backed PVC chairs and the Vera Lynn singalongs. We don’t think of people living good meaningful and fruitful lives. People making music and videos, running their own trading courses and laughing (a lot).

I want to rethink (and rebrand) dementia. Do please join me.

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This was taken from a visual representation of a response to a consultation about social care..it’s what a group of PLWD (people living with dementia) don’t want. But I suspect it’s an image many folk bring to mind when they hear the D word - as did I before my Alzheimer’s diagnosis.

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I would love to put an end to what I call ‘misery porn’. You know, the video that shows the poor harassed carer struggling to cope without respite care. That shows dementia negatively.
My friends with dementia live interesting full and exciting lives. We have our challenges, but we strive to overcome them.
But of course positive pictures don’t raise money for charities, do they?

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Good morning.  My name is Gerry King, I am 58 years old and was diagnosed with young onset Alzhiemers disease at the age of 55. People's perception of dementia,  both professionals and in general, needs to change from the stereotypes portrayed over many many years. We are not PVC armchair warriors listening to Vera Lynn. We are Dementia warriors listening to Iggy Pop, The Stranglers, The Rolling Stones, Depeche Mode.

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Good morning.  My name is Gerry King, I am 58 years old and was diagnosed with young onset Alzhiemers disease at the age of 55. People's perception of dementia,  both professionals and in general, needs to change from the stereotypes portrayed over many many years. We are not PVC armchair warriors listening to Vera Lynn. We are Dementia warriors listening to Iggy Pop, The Stranglers, The Rolling Stones, Depeche Mode.

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Hello, I'm Dr Kellyn Lee, a Chartered Psychologist and researcher in ageing and dementia.  Over the last 5 years I have develop Material Citizenship - a new approach to dementia care. This approach enables people living with dementia choice, control and agency, supporting them to maintain and demonstrate their identity, through every objects, living the life they want to live their way. Here is a link to an article that featured in The Guardian: https://www.theguardian.com/society/2021/jan/14/everyday-objects-people-with-dementia-quality-of-life-care-homes

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Hello, I'm Dr Kellyn Lee, a Chartered Psychologist and researcher in ageing and dementia.  Over the last 5 years I have develop Material Citizenship - a new approach to dementia care. This approach enables people living with dementia choice, control and agency, supporting them to maintain and demonstrate their identity, through every objects, living the life they want to live their way. Here is a link to an article that featured in The Guardian: https://www.theguardian.com/society/2021/jan/14/everyday-objects-people-with-dementia-quality-of-life-care-homes

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Whilst Material Citizenship has been developed for care home staff, it also applies to people still living at home. For more information contact me on info@materialcitizenship.com

As well as this I am currently collaborating with a clinical psychologist with experience of supporting people with long term health conditions and their carers.  We plan to develop a 6 week programme, and write a book, for carers of people living with dementia using the Acceptance and Commitment Therapy model.  This will support carers to manage their own thoughts and feelings in line with their values and support them to live better with dementia.

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hen you woke this morning the clothes you planned to wear were gone. The shower gel smelt weird - it wasn't your usual. There was no hairdryer to dry your hair. You wanted to make a hot drink but you had no access to a kettle ... How is your day going? How do you feel? Welcome to the lives of many people with dementia living in care homes."

This is the opening of a new training programme for care home staff developed by Dr Kellyn Lee, chartered psychologist and research fellow in ageing and dementia at the University of Southampton. Called material citizenship, it aims to get staff thinking about the importance of mundane, functional objects to our lives and identities, and how giving their residents agency over these things can significantly improve their wellbeing.

Some 850,000 people in the UK are living with dementia and about 70% of care home residents have the condition or severe memory problems. So anything that delivers a better quality of life to these people without a huge input of resources is very valuable, says Charlotte Gilbert, manager of Brendoncare Knightwood, a care community near Eastleigh, Hampshire, which includes the 20-bed Knightwood Court care home.

Gilbert and the care home's senior care assistant, Becci Fletcher, were among five staff from Knightwood who participated in the first one-day material citizenship course (moved online due to Covid). They credit the training with improving their practice as well as making them feel good about their work and the difference they can make - a welcome morale boost, mid-pandemic. Crucially, they say, it has "definitely" made life better for people in their care.

"One of our residents really wanted to polish her own room with a particular polish," says Gilbert. Initially this was seen as unnecessary: the cleaning staff were there to clean. "But now we've got her the polish she wanted. She polishes her room and it makes it smell like home."

"Another resident goes around collecting up all the trays after breakfast," adds Fletcher. "Before the training we would say, 'don't worry, we'll do that' but now we let her do it. She enjoys it. She feels she's looking after people and it gives her more sense of worth."

Lee first became concerned about the culture in care homes while working in the sector as a 19-year-old student. "It was awful - all these people sitting in chairs waiting for something to happen, or getting agitated and being labelled 'challenging'." The idea that ordinary objects might prove a key to improving wellbeing came later through her work as a therapeutic psychologist.

"I had a client who was struggling with her relationship with her mother who was in a care home. One day my client said she had had a really good visit after taking in a flask of tea. She had no idea why the flask made a difference." Lee suggested it might be because it gave her mother control - she did not have to ask the staff to bring their tea, instead pouring it out herself as she chose.

From this grew Lee's Phd: qualitative research in two care homes in southern England, which found that residents with dementia often moved in directly from hospital, without a chance to go home and select possessions. They were frequently excluded from the decision-making process and objects were even removed from their rooms without their knowledge or permission. In the risk-averse atmosphere of residential care, says Lee, few residents had access to functional objects, let alone freedom to use them as they wished. She concluded that a better understanding of "material citizenship" could "support a rights-based approach to dementia care by using functional objects as an enabler to balance protection and empowerment".

With funding from the Economic and Social Research Council's Impact Acceleration Account, Alzheimer's Society, and Brendoncare, Lee developed the training that has now led to Fletcher and Gilbert putting this into practice: "We have a resident who is very wobbly on her feet, but really wanted to go into the kitchenette and make herself a cup of tea. There was obviously a risk of her spilling boiling water and burning herself, so we had a discussion about it. Now she goes in and puts the tea bag and sugar and milk into the cup. Then we go in and add the boiling water. It's become part of her routine and she's really happy with that," says Gilbert.

"Another lady is very particular about her bed," Fletcher observes, "She wanted to make it herself but we were afraid she might fall - you can't hold on to a frame and make a bed. Now we stand with her and do it together".

"They are such simple things," says Gilbert, "we don't usually think about them, but they are part of who we are." And they have been even more important during the pandemic, she says. Although Knightwood Court, which looks after 20 residents, has had no cases of Covid-19, like all care homes it has had to deal with the loss of visits, outings, and for a while even collective meal times, making "the little things of daily life more important than ever".

"Material citizenship has given us more of a can-do attitude," Gilbert continues. "Instead of just thinking about the risks, we think round it. It's a change of mindset." This is exactly the change Lee was hoping her project would spark. "Having dementia doesn't mean you aren't an individual capable of some decision-making and taking part in aspects of everyday life," she says, but many care homes are much more restrictive than Knightwood. "If we can start really simply with everyday objects, the hope is that we can build a shift in approach, a culture change across the sector."

Knightwood has asked for a repeat of the training to include their 28 domestic staff so that everyone is on the same page, and a follow-up session for 40 care staff to explore the ideas further. This has prompted Lee to develop a second part to her programme. "Staff are very vulnerable to blame if anything goes wrong," she says, "so the next training will look at incorporating material citizenship into care plans. This would allow them to explain the balance between risk of physical harm and risk of psychological harm, ensure all staff deliver the same care, and evidence the process for inspectors."

Lee has now secured another year of funding, from the National Institute for Health Research's Applied Research Collaboration Wessex, to roll out the training to more care homes. Sessions for other Brendoncare homes and Hallmark Care Homes will begin in February with more to follow.

Fletcher and Gilbert are in no doubt about the value of the rollout: "We feel passionately that everybody should have this training. If you take people's everyday things away they lose independence and who they are. It may only mean changing 10 minutes of the day but it can make a massive difference."

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How everyday objects can improve quality of life for people with dementia

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hen you woke this morning the clothes you planned to wear were gone. The shower gel smelt weird - it wasn't your usual. There was no hairdryer to dry your hair. You wanted to make a hot drink but you had no access to a kettle ... How is your day going?

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Here is a link to some short videos about Material Citizenship for people living with dementia: https://www.youtube.com/channel/UCtrBSh0rND-_TqU9HG3IhlA. 

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Here is a link to some short videos about Material Citizenship for people living with dementia: https://www.youtube.com/channel/UCtrBSh0rND-_TqU9HG3IhlA. 

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,

Corresponding Author

School of Health Sciences, University of Southampton, Southampton, UK
Correspondence
Kellyn Lee, Faculty of Environmental and Life Sciences, School of Health Sciences, University of Southampton, Southampton, UK.

Email: Kellyn.lee@soton.ac.uk

Contribution: Conceptualization (lead), Data curation (lead), Formal analysis (lead), Funding acquisition (supporting), ​Investigation (lead), Methodology (lead), Project administration (lead), Validation (lead), Visualization (lead), Writing - original draft (lead), Writing - review & editing (equal)
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Ruth Bartlett ,

School of Health Sciences, University of Southampton, Southampton, UK

Contribution: Conceptualization (supporting), Data curation (supporting), Formal analysis (supporting), Funding acquisition (lead), ​Investigation (supporting), Methodology (supporting), Project administration (supporting), Supervision (lead), Validation (supporting), Visualization (supporting), Writing - original draft (supporting), Writing - review & editing (equal)
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Abstract

Materiality has become an increasingly important topic in sociological studies of health care. How objects support the identity of people with dementia in care homes is an emerging area. While early research has tended to focus on sentimental or cherished items (such as photographs or keepsakes), the present study focused on functional objects (such as curling tongs or a hairdryer) as a mechanism to actualise citizenship. This article presents findings from an ethnographic study into the everyday experiences of people with dementia living in a residential care home in southern England. Drawing on a framework analysis of observations of daily life, object-elicitation interviews with residents, in-depth interviews with staff and relatives and documentary research, the findings demonstrate that object relations are a critical but overlooked site for citizenship. Residents are rarely involved in decision-making relating to their personal possessions, lack control over objects and are often discouraged from material interactions important to the maintenance and cultivation of identity. We introduce a new concept 'material citizenship' to advance thinking and practice in this area and argue that it is valuable for care practices to combine a material citizenship approach with existing care practices; thus, elevating the importance of object-person relations in dementia care.

Abbreviations

INTRODUCTION

Materiality is an increasingly important topic in sociological studies of health and social care. The idea of a 'materialities of care' is used to make visible the often unnoticed, mundane aspects of a care setting, such as the use of topical creams in a care home (Nettleton et al., , p. 243). Research on the 'materialities of care' focuses on the role or function of actual physical objects in the caring process. Objects are considered to be a significant mediator in a networked relation of care (Araujo, et al., , p. 1). Take, for example, how an ordinary piece of furniture (like a communal seat) mediates care by providing people with the physical space to share or connect with each other in a particular way (Brownlie & Spandler, ). Our interest in materiality is in how access to and use of functional objects might afford citizenship, particularly for persons living with dementia in care homes. Our definition of functional objects is 'any inanimate item which a person can use to carry out a task, not necessarily to completion or to any perceived standard, which maintains and supports his/her identity'.

Concern for the citizenship of persons with dementia is growing, as evidenced by global policy work on the human rights and meaning of shared responsibility for people living with this condition (see, e.g. Shakespeare et al., ). To date, research on citizenship has focused on human relationships rather than object-person relations. In this article, we use a material lens to examine access to, and use of functional objects by persons with dementia living in a care home setting, and coin the phrase 'material citizenship' to advance thinking and practice in this area.

Aligning citizenship, materiality and people with dementia in care homes

Citizenship is an increasingly important concept for enhancing the status, rights and opportunities afforded to people with dementia (Baldwin, ; Bartlett, ; Bartlett & O'Connor, , ; Brannelly, ; Österholm & Hydén, ). Various studies have used the idea of citizenship to draw attention to power relations and discriminatory practices in care settings (Bartlett & O'Connor, ). For example, Brannelly () investigated the (lack of) participation by people with dementia in decisions about their care, in terms of citizenship. In another study, communication barriers between social workers and persons with dementia were analysed as 'citizenship as practice' (Österholm & Hydén, ). The notion of citizenship is useful for bringing to the fore peoples' relationships to the 'larger structures of rule and belonging, which are often but not exclusively nation states' (De Koning et al., , p. 121). For people with dementia, such structures are invariably embedded in care systems and practices as the condition adversely affects a person's capacity to take responsibility for themselves.

To date, social citizenship has lacked both a material lens and a practical application for successful implementation in a care context. We understand social citizenship to mean a 'relationship, practice or status, in which a person with dementia is entitled to experience freedom from discrimination (and despair), and to have opportunities to grow and participate in life to the fullest extent possible' (Bartlett & O'Conner, , p. 36). While the idea is applicable to any setting, research on citizenship has tended to focus on those living in their own homes and how it might actually manifest in a care home has yet to be examined. In this article, we argue that the access to and use of functional objects can be a useful mechanism to enable social citizenship.

While dementia varies from person to person, a common and noticeable difference is the way in which interactions with everyday objects can become challenging and cumbersome. Activities such as ironing a shirt or fastening a blouse, once easy and taken-for-granted, will often require noticeable effort and concentration (Phinney & Chelsa, ). Other activities, such as making a drink or cooking a meal, can become difficult, maybe even impossible without help. This is because such tasks involve a high degree of executive functioning - that is, using various objects in a specific sequential order, which is challenging for someone with a severe cognitive impairment like dementia. Nevertheless, removing access to the objects required to complete everyday tasks can deny a person citizenship, as it effectively refutes a person's capacity for self-expression.

The importance of objects for the expression of identity and agency is well documented, and central to object-relations research (Belk, ; Csikszentmihalyi & Rochberg-Halton, ; Mccracken, ; Rochberg-Halton, ; Rubenstein, ). Recent studies have examined the link in various contexts and in relation to particular objects. For example, one study which explored the materialities of care in relation to people with dementia in care homes found handbags to be an important object for female residents; the 'rummaging in handbags' sought to create boundaries of privacy and facilitated a sense of identity (Buse & Twigg, , p. 11). Another study observed how people living in a dementia care unit reconfigured materialities to make a space for themselves and/or other residents (Cleeve, ). Other work, which does not include people with dementia, but is nonetheless relevant, found that interactions with material culture (such as hand-held vacuum cleaners) help to facilitate interaction and meaningful relationships (Lovatt, , ). These findings highlight the significance of functional objects in the context of a care home. Moreover, they confirm how achieving a sense of home can be made easier if a person has access to resources that maintain and cultivate identity (Cooney, ; Molony, ).

While objects are often overlooked in dementia care research or viewed as secondary to person-person relationships or variables to control (Ceci et al., ), they can be useful mechanisms offering insights into relationships supporting choice, control and agency (Araujo et al., ; Driessen, ). For example, using a dining table to maintain a sense of dignity, control and agency (Kroger & Adair, ); a television to feel connected to the outside world (Nord, ) and a mobile phone to maintain a spousal relationship (Ursin & Lotherington, ). The present study focused on functional objects (such as curling tongs or a hairdryer) that enable people to take part in activities of daily life.

The freedom to choose the life one wishes to have, which may include using objects, is an important aspect of citizenship (Pfister, ). It is especially relevant for people with a disability, as opportunities to live a meaningful life are often curtailed by others (Lid, ) through materialist practices. Take, for example, Ursin and Lotherington's () report of a young man with dementia living in a nursing home who used his mobile phone each day to speak with his wife. On two occasions, staff found the mobile phone in the laundry, on bringing a third replacement mobile phone, staff informed his wife that the mobile phone would be kept in the staff room. Furthermore, she was asked not to call him on the mobile phone as staff could not hear it ring. As a result, the man's chance to communicate with his wife on his own terms was lost, indicating a link between the materialities of care and citizenship, which we aim to examine further in this research.

In this article, we use a material lens to examine access to and use of functional objects by people with dementia living in a care home. Rather than focusing on how such practices mediate care, we examine how functional objects might afford social citizenship. For a care home resident, the practice of citizenship might be as mundane as curling their hair with tongs, the point is that the action of using this functional object enables the resident to enact identity, exert some control and take some responsibility for themselves. Increasingly, scholars are calling for more recognition of the capacity of people with dementia to take control, and regard 'citizenship-in-and-as practice' as a potentially useful framework for realising that (Nedlund et al., ). The aim of this study is to add to that small body of work by focusing on access to and the use of functional objects in the context of people with dementia in care homes.

METHODOLOGY

The findings discussed in this article form part of data collected through doctoral research completed in 2019. The study was given ethical approval by the NHS Health Research Authority Social Care Research Ethics Committee (HRA Social Care REC) (Reference number: 17/IEC08/0003). The primary objective of the study was to understand how objects manifest in the everyday lives of people with dementia living in care homes. A secondary objective was to examine whether social citizenship was a useful lens to examine this. An ethnographic approach enabled observations of object-person relations in everyday life in the care home for residents, staff and relatives. It would provide insight into how functional objects are used and by whom. While the study was conducted in two care homes in southern England, this article draws on the findings of one 'Southcote Manor'.

Southcote Manor is a two-storey local authority residential care home offering care to 30 older adults including people with dementia. Each floor has corridors, with a mix of residents' rooms, communal areas and bathrooms. Staff offices are located on the ground floor and residents move between floors when accompanied by staff. All bedrooms are of similar design but varied in size. Most rooms have identical furniture such as a bedside table, wardrobe, sink and commode. Some residents have brought in a small item of furniture from home, such as a chair, but this was often discouraged due to limited space and health and safety concerns.

A 4-week hanging-out period (Bernard, ) commenced at Southcote Manor in July 2017. This provided an opportunity to build rapport prior to data collection and answer any questions about the study. Time was spent in communal areas, talking with residents, staff and relatives, taking part in organised activities, helping staff at mealtimes and eating with residents. Most residents and relatives appeared to accept the presence of a researcher, some residents mentioned enjoying having a new person to talk to. Some staff found it difficult, at times leaving the room when observations were taking place, and on two occasions challenging her presence. The hanging-out period allowed time to gain some familiarity of the building, memorise door codes and observe care home life. Data collection was carried out by the first author between the months of August and November 2017.

A convenience sampling technique was used to recruit three groups of participants to the study: (1) residents with dementia, (2) staff employed for a minimum of 6 months and (3) relatives who regularly visited the care home. It was important to elicit these differing perspectives to understand how decisions are made about functional objects. The registered manager of Southcote Manor acted as a gatekeeper and distributed participant information sheets to residents, staff and relatives. The first author met with potential participants to discuss the study and answer any questions before deciding whether to take part.

Thirty-nine participants took part in the study: 15 residents with dementia (11 females and four males, average age 88) 16 staff (12 females and 4 males, average age 46) and eight relatives (six females and 2 males, average age 60). Of the 39 participants who took part in the study, 38 were of white British origin, and one member of staff was Romanian.

Data were collected over a 16-week period and included participant observations, object-elicitation interviews (with residents), in-depth interviews (with staff and relatives) and documentary research methods. Participant observations took place in the communal areas of the care home, 3 days per week, 4 hours per day, between the hours of 8:00 AM and 8:00 PM. This resulted in 144 hours of participant observations. Participant observations and field notes were written to capture informal conversations and object-person interactions such as who used the remote control for the television, who carried out domestic chores and whether residents had choice over where they sat.

Object-elicitation interviews were conducted with four residents, using the objects in a person's room to guide the interview; asking questions such as: 'shall we have a look at some of the things in your room?', 'how often do you use this?' and 'who decided what was brought in?'. Nineteen in-depth interviews were conducted: eleven with staff and eight with relatives. Most in-depth interviews with staff and relatives took place in the staff office or staff lounge, and one interview took place in a relative's home. Within the interviews, we explored which objects were important to the interviewee and how it might feel to have those objects taken away. We also explored who was involved in deciding which belongings residents could have and reasons why some objects were viewed as acceptable for care home life while others were not. Documents such as: quality standards documents, individual resident care plans and an inventory log were analysed to understand how objects were considered within care practices.

Consent procedures

Written consent was sought and provided by all participants except those who were assessed as lacking capacity to take part in research. For those participants, a personal consultee (relative, friend, spouse or independent advocate) provided either written or verbal agreement. People with dementia assessed as lacking mental capacity were included in participant observations when a personal consultee provided a favourable opinion. In line with HRA Social Care REC recommendations, only residents assessed as having capacity to take part in research were eligible to take part in object-elicitation interviews. In addition to this, a process consent method was used at every participant observation; this involved approaching each participant at every data collection point, making clear that research was taking place, what it involved and asking whether the participant was willing to take part.

Data analysis

A framework analysis approach was used, using Nvivo 11, to enable structured and factual questions to be asked of the data (Ritchie & Spencer, ; Srivastava & Thomson, ). A prime concern was to describe and interpret what was happening within a particular context, how objects were used in practice and their inclusion in policy and practice documents.

The first step of familiarisation provided an opportunity to gain an overview of the data provided by the three participant groups. Transcripts and field notes were read and audio-recordings listened to while making notes about their content. The second stage of the analytical process was to organise the data in a meaningful and manageable way to aid future exploration and the retrieval and examination of data later on. The formation of framework categories informed by a priori concerns and emergent issues allowed the identification of categories that best fit the research questions. This also meant that the framework included the interests of the researcher and issues pertinent to participants (Ritchie & Spencer, ).

A set of preliminary codes were produced in step 1 pulling together all data sets, providing overall themes about what was said within interviews and what was observed in practice. The next step was to ask specific questions related to the research question such as: (1) How are decisions made relating to personal possessions and who is involved in decision-making?; (2) Who is responsible for bringing personal possessions into the care home, and how are future objects acquired?; (3) How are functional objects used in care homes and who uses them? and (4) Are measures taken to control objects in the care home and if so what measures and by whom?

Codes created through interview and observational data were merged and overlapping codes were collapsed. These were reorganised into four categories: (1) decision-making relating to the ownership and use of functional objects, (2) access to functional objects to participate in everyday life, (3) safety or the perceived risk of having or using functional objects and (4) relationships with objects, ownership and use of functional objects.

The third stage of the analytical process involved systematically applying each interview transcript and field note to each framework category and comparing these to practice and policy documentary sources. This revealed how decisions were made, by whom and whether these decisions were influenced by policy guidance.

In stage 4 of the analytical process a framework matrix was generated. This provided a simple summarised version of the interview and observation data (see Table 1 for matrix staff interview data).

Safety

If they said they wanted to do their hair, the carers are quite happy here to let them, they would stay there, supervising them while they did their hair anyway. They do get that option anyway. They can't just take it down

Decision-making

No, usually it's the families. We have done it for a couple of residents, when we've gone back to their home for them to get some belongings, but usually the family members have taken over and unfortunately some of them dump stuff before even letting the residents look at what's left and things like that

Taking action

Say I went into the dining room and I feel a little bit low, I could do with someone bringing out maybe one of my old knitted jumpers or something, or a picture. I personally would hope that a carer would listen to me, and then go and grab that item for me, so I could look at it or cuddle it.

Control

I know some have come in with mobile phones, so if they wanted to phone their families, but a lot of the families don't want them to have telephones

The final stage of analysis was to use the matrices to pull together the key characteristics of the data and map and interpret the data as a whole. This provided an understanding of how decisions were made about objects, and who was involved, who had access to objects and how they were used and provided reasons why some residents had control over objects while others did not. It was also useful in illuminating contradictions and inconsistencies within and between groups and data sets.

FINDINGS

Applying a material lens to care home life provided an opportunity to explore what citizenship looked like for those who took part in this study. By focussing on objects and viewing care home life through a material lens, we were able to determine whether citizenship was supported in care practices for people with dementia.

The study presents two key findings. First, we found a 'lack of opportunities to return home to collect personal possessions'. Second, we found a 'lack of control over personal possessions and functional objects'. From this, we developed the framework of 'material citizenship'.

Lack of opportunities to return home to collect personal possessions

This study found that residents who moved directly from hospital to the care home lacked the opportunity to return home to collect their belongings. Furthermore, similar to other researchers (Innes et al., ; Lindley & Wallace, ), residents were often not involved in deciding which belongings they wanted to take and lacked control over what happened to their items. Take, for example, 94-year-old Karen. Karen was admitted to hospital following a fall at home; it was there the decision was made for her to move directly to a care home, and she was not given an opportunity to return home to collect her possessions. Karen had lived at Southcote Manor for 3 months when the study began, she would talk about her experience of moving into the care home at times with anger and other times with hopelessness at her lack of agency. She spoke of how decisions were made for her and how little control she had over her life and her possessions. Karen mentioned that she would have organised her own removals had she had control over her finances. Instead, she had to wait for her nephew to find the time and 'hope' that he would bring the items she had requested. Karen felt disempowered by the process of moving into the care home and the lack of opportunities to organise her possessions.

This excerpt shows that while relatives usually take on the task of dealing with a person's possessions, staff had on occasions returned to a person's home to collect belongings. This was not common practice and residents did not accompany staff when doing so. Staff mentioned being the 'go-between' for residents, taking requests for items they wanted, contacting relatives to pass on this request but having no control over the outcome. Confounding our view that once a person becomes a 'resident' they lose control of their possessions.

Previous research shows that rather than viewing objects as a way in which to engage in normal social interactions, objects can become problematic (England & Dyck, ). The present study found the downsizing process was difficult for all concerned. An example of this is shown in a son's explanation of why he excluded his mother when organising her belongings:

[If]I hadn't done it that way, and my mother had been there, I most probably would have still been there today, trying to clear it all out because it would have been, oh no I can't, I don't want to get rid of that; where are you going to put it; there is no room to move a five-bedroom house.... into a one-bedroom home. (Finlay, relative, interview)

For Finlay, the task of sorting his mother's belongings was onerous; Finlay lived in the south of England, his mother's house was in the north of England; he worked full-time and had two young children. Supporting a person to organise and collect belongings can be a complex process, fraught with difficulties. It is, therefore, unsurprising that relatives and staff may want to avoid this to reduce possible complications.

Although this is a plausible assumption, particularly as a person may not have chosen to live in the care home in the first instance, given that none of the participants in this study had an opportunity to return home, there is no evidence to support this claim. Nevertheless, it means that people have very little control or choice over personal possessions. Not affording people the chance to return home is a practice that denies new residents the right to access their personal possessions; we suggest, indicates a lack of material citizenship.

This emphasises an imposed dependency; Karen was positioned as a passive recipient rather than an active citizen, she was unable to arrange delivery of her possessions, instead she had to wait for her nephew to bring the items to her. Karen mentions that she never saw some of her belongings again, demonstrating how little control she has.

Lack of control over personal possessions and functional objects

In this case, the object was removed by the member of staff without informing her. This study found no evidence of risk assessments taking place concerning functional objects. Instead, staff made subjective decisions on an ad hoc basis. Given the lack of guidance in policy and practice guides and the focus on safety, this is perhaps unsurprising.

The local authority care home quality standards, included as a documentary source, provided guidance encouraging certain objects into the care home. The document listed items such as toiletries, soft furnishings, photographs and a small item of furniture. Clothing should be able to withstand a 60-degree wash, be a size bigger than usual and have an elasticated waistband to assist staff with dressing and undressing. Objects were viewed and controlled through a service lens rather than as items important for enabling citizenship, or as a mechanism for gaining a deeper understanding of a person's historical biography and present identities (Buse & Twigg, ). The guidance showed the tension around these spaces, as both a 'home' and as a regulated workplace.

Due to ethical considerations, it was not easy to ascertain how decisions were made about clothing. No observations were allowed in residents' rooms. However, on one occasion, Karen was asked if she planned to attend the organised music session; she said she did not want to go in the clothes she was wearing. She had on a red cardigan that she did not like but 'they' insisted she put it on, and a floral skirt she said she would not have chosen to wear. Karen independently changed her clothes regularly throughout the day, with staff commenting 'oh you've got changed again'. This suggests she had some freedom to access her clothes and change them as and when she pleased.

Karen asked for curling tongs, but staff viewed this item as risky; they thought she might burn herself or another resident as they frequently walked into each other's rooms. Instead, staff provided Karen with plastic curlers, which she found difficult to use. This shows how perceptions of risk can act as a barrier to citizenship in a care home context (Buse & Twigg, ).

Carrying out domestic chores was important to Pippa. She often became agitated if staff cleared away plates or began tidying the kitchen area. Pippa clearly struggled with executive functioning, often not knowing what to do with objects; nevertheless, staff used techniques such as guiding Pippa's movements or showing her where to place objects, akin to 'scaffolding' (Österholm & Hydén, ). Staff supported her in carrying out chores considered risky such as cleaning tables with detergent, washing up pots and cutlery, filling the dishwasher and making cups of coffee. When asked why Pippa was supported in these daily activities, the response from staff was 'because she's young'. This shows another layer of complexity in object-person relations - that is, it is not simply about cognitive ability and risk but the perception of age and what that represents.

DISCUSSION

In this article, we suggest that residents living with dementia at Southcote Manor lacked control over functional objects. Many residents were not involved in decision-making relating to the belongings they brought from home or were unaware of what had happened to them. Like other researchers, we found that people with dementia are routinely excluded from the decision-making process (Fetherstonhaugh et al., ). In the context of this study, functional objects manifest in risk-averse practices. While risk management is necessary in care provision and can be a positive process, it can also disempower and be restrictive if done so discriminatorily. Examining decision-making and the use of objects through a social citizenship lens is useful in drawing out care practices that do or do not afford people with dementia the same opportunities as others. For example, Karen was denied access to her curling tongs because staff considered it risky. Whereas Pippa was encouraged to carry out domestic chores with items considered risky. A strength of material citizenship is that access to objects can enable people to live the life that they want to live and can be facilitated by care home staff. This may be more applicable to people with milder degrees of cognitive impairment; however, objects can also function as an external memory support (Hyden, ) which could also be useful in care practice.

While other studies have referred to residents' interactions with their material surroundings as providing the ability to continue routine practices such as organising their surroundings, cleaning and hosting (Lovatt, ; Nord, ), this study only observed one person enabled to carry out these tasks. Instead, staff were often observed discouraging interactions from taking place. By including people with dementia and applying a material lens to care home life, we were able to draw out subtle injustices in care practice. Injustices that were not intentional, but nevertheless present. There was also a lack of guidance in the management of possessions, or an understanding of the importance of object-person relations in policy and practice documentation. By emphasising the importance of the materialities of care, applying a material lens to care practice, we were able to show a continuous reduction in control and independence for people with dementia living in a care home.

Other health sociologists have argued that by paying more attention to materiality, 'everyday routines could become important occasions for care' (Cleeve et al., , p. 126). Our analysis confirms this and takes it further by showing how material practices, specifically access to and use of functional objects, have significance for social citizenship. For instance, disposing of a person's belongings when they move into a care home is an example of a 'material practice that is made mundane and inconsequential' (Latimer, , p. 379). Importantly, from our perspective, it shows a disregard for a person's need for familiar objects to participate in life - that is, social citizenship. The value of material citizenship is that it focuses on the nuances of a person's day-to-day routines and rituals and the functional objects they need to keep these going. Material citizenship is, thus, defined as:

the right to be included in decision-making relating to personal possessions and the right to have opportunities to use functional objects to perform everyday tasks.

The ability to make decisions and have those decisions upheld is central to self-determination (Fetherstonhaugh et al., ). Material citizenship aims to promote this by focusing on a person's control over and rights and relationships with respect to functional objects, including, for example, being able to participate in everyday life practices such as household chores. Additionally, the concept aims to help elevate an understanding of the significance of functional objects and the role they can play in care assessments and care planning. This is particularly relevant for people living with dementia in care homes, as policies and procedures are often designed to meet physical care needs rather than promote social citizenship.

The idea of material citizenship aligns and builds upon knowledge related to the materialities of care and social citizenship providing a pragmatic way of operationalising a person's rights and responsibilities. Material citizenship provides a framework with which to educate, implement and evaluate the presence of social citizenship in a care home environment. By focusing on how decisions are made about belongings, and the access people have to functional objects, a balance can be achieved which provide assessments of proportional and reasonable risk of physical harm and citizenship. This would require conversations to take place among residents, relatives and staff to explore and formally agree on a plan of how a person can be supported to live the life they would like to live, including the objects needed to achieve this. For those with more advanced dementia, who may have difficulties with verbal communication, objects could be utilised as a method to explore how a person with dementia wants to live their life. Embedding material citizenship in organisational documentation is a potentially useful way of helping staff consider the role of functional objects in care. That said, larger-scale studies are needed, which involve more diverse groups of people with dementia, to understand fully the value and limitations of material citizenship as a conceptual framework for care.

As with all studies, there are several limitations. First, the data presented here were collected from a single study site in southern England and, therefore, no account is taken of variability between care homes, regionally, nationally or globally. Second, object-elicitation interviews were perceived as problematic by the ethics committee, and so people assessed as lacking mental capacity (i.e. a large proportion of the care home population) had to be excluded from taking part in the study. Third, in line with HRA recommendations, it was not possible to observe how functional objects were used during personal care and in resident's room. As such, the findings only provide a partial picture of people's access to and use of functional objects in care homes.

CONCLUSION

The growing number of people with dementia moving into a care home and increasing pressure with regard to a person's rights raises urgent questions about peoples' access to and use of functional objects. We have argued for the importance of bringing a material lens to sociological and psychological discussions of citizenship and care, specifically in the context of persons with dementia in residential care homes. Findings from this study suggest that functional objects are overlooked in the context of care homes and there is a lack of guidance for care workers. Thus, residents depend upon the whim of individual staff members, as to whether they can access a particular object, rather than through an organised and structured care planning and risk management process. Understanding how functional objects manifest in care practices made visible the lack of social citizenship afforded to people with dementia in this setting. We suggest it would be valuable for care practices to combine a material citizenship approach with existing care practices. This would elevate the importance of object-person relations, allowing staff and relatives to recognise that functional objects can help a person maintain identity and influence how they are perceived.

Finally, the concept of 'material citizenship' usefully extends our understanding of social citizenship by foregrounding the role of objects in peoples' lives. Specifically, it shows how functional objects are not only an extension of the self (Belk, ) but also making decisions about and using functional objects enable people to take control and practice everyday citizenship, such as taking care of oneself and others. As such the concept, once it has been more widely applied and assessed in the dementia field, may be useful in other areas of health and social care where object-person relations are important, but often overlooked, including hospitals and care homes for people with learning disabilities.

ACKNOWLEDGEMENTS

Our sincere appreciation goes to all of those who took part in the study, and to the Alzheimer's Society for funding this study.

AUTHOR CONTRIBUTION

Kellyn Lee: Conceptualization (lead); Data curation (lead); Formal analysis (lead); Funding acquisition (supporting); Investigation (lead); Methodology (lead); Project administration (lead); Validation (lead); Visualization (lead); Writing-original draft (lead); Writing-review & editing (equal). Ruth Bartlett: Conceptualization (supporting); Data curation (supporting); Formal analysis (supporting); Funding acquisition (lead); Investigation (supporting); Methodology (supporting); Project administration (supporting); Supervision (lead); Validation (supporting); Visualization (supporting); Writing-original draft (supporting); Writing-review & editing (equal).

ENDNOTES

In line with HRA Social Care REC recommendations, data from care home one were excluded from analysis and write up due to being a pilot site.

Pseudonyms are used to disguise the identity of the care home and participants.

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

Abstract

Materiality has become an increasingly important topic in sociological studies of health care. How objects support the identity of people with dementia in care homes is an emerging area. While early research has tended to focus on sentimental or cherished items (such as photographs or keepsakes), the present study focused on functional objects (such as curling tongs or a hairdryer) as a mechanism to actualise citizenship. This article presents findings from an ethnographic study into the everyday experiences of people with dementia living in a residential care home in southern England. Drawing on a framework analysis of observations of daily life, object-elicitation interviews with residents, in-depth interviews with staff and relatives and documentary research, the findings demonstrate that object relations are a critical but overlooked site for citizenship. Residents are rarely involved in decision-making relating to their personal possessions, lack control over objects and are often discouraged from material interactions important to the maintenance and cultivation of identity. We introduce a new concept 'material citizenship' to advance thinking and practice in this area and argue that it is valuable for care practices to combine a material citizenship approach with existing care practices; thus, elevating the importance of object-person relations in dementia care.

Abbreviations

INTRODUCTION

Materiality is an increasingly important topic in sociological studies of health and social care. The idea of a 'materialities of care' is used to make visible the often unnoticed, mundane aspects of a care setting, such as the use of topical creams in a care home (Nettleton et al., , p. 243). Research on the 'materialities of care' focuses on the role or function of actual physical objects in the caring process. Objects are considered to be a significant mediator in a networked relation of care (Araujo, et al., , p. 1). Take, for example, how an ordinary piece of furniture (like a communal seat) mediates care by providing people with the physical space to share or connect with each other in a particular way (Brownlie & Spandler, ). Our interest in materiality is in how access to and use of functional objects might afford citizenship, particularly for persons living with dementia in care homes. Our definition of functional objects is 'any inanimate item which a person can use to carry out a task, not necessarily to completion or to any perceived standard, which maintains and supports his/her identity'.

Concern for the citizenship of persons with dementia is growing, as evidenced by global policy work on the human rights and meaning of shared responsibility for people living with this condition (see, e.g. Shakespeare et al., ). To date, research on citizenship has focused on human relationships rather than object-person relations. In this article, we use a material lens to examine access to, and use of functional objects by persons with dementia living in a care home setting, and coin the phrase 'material citizenship' to advance thinking and practice in this area.

Aligning citizenship, materiality and people with dementia in care homes

Citizenship is an increasingly important concept for enhancing the status, rights and opportunities afforded to people with dementia (Baldwin, ; Bartlett, ; Bartlett & O'Connor, , ; Brannelly, ; Österholm & Hydén, ). Various studies have used the idea of citizenship to draw attention to power relations and discriminatory practices in care settings (Bartlett & O'Connor, ). For example, Brannelly () investigated the (lack of) participation by people with dementia in decisions about their care, in terms of citizenship. In another study, communication barriers between social workers and persons with dementia were analysed as 'citizenship as practice' (Österholm & Hydén, ). The notion of citizenship is useful for bringing to the fore peoples' relationships to the 'larger structures of rule and belonging, which are often but not exclusively nation states' (De Koning et al., , p. 121). For people with dementia, such structures are invariably embedded in care systems and practices as the condition adversely affects a person's capacity to take responsibility for themselves.

To date, social citizenship has lacked both a material lens and a practical application for successful implementation in a care context. We understand social citizenship to mean a 'relationship, practice or status, in which a person with dementia is entitled to experience freedom from discrimination (and despair), and to have opportunities to grow and participate in life to the fullest extent possible' (Bartlett & O'Conner, , p. 36). While the idea is applicable to any setting, research on citizenship has tended to focus on those living in their own homes and how it might actually manifest in a care home has yet to be examined. In this article, we argue that the access to and use of functional objects can be a useful mechanism to enable social citizenship.

While dementia varies from person to person, a common and noticeable difference is the way in which interactions with everyday objects can become challenging and cumbersome. Activities such as ironing a shirt or fastening a blouse, once easy and taken-for-granted, will often require noticeable effort and concentration (Phinney & Chelsa, ). Other activities, such as making a drink or cooking a meal, can become difficult, maybe even impossible without help. This is because such tasks involve a high degree of executive functioning - that is, using various objects in a specific sequential order, which is challenging for someone with a severe cognitive impairment like dementia. Nevertheless, removing access to the objects required to complete everyday tasks can deny a person citizenship, as it effectively refutes a person's capacity for self-expression.

The importance of objects for the expression of identity and agency is well documented, and central to object-relations research (Belk, ; Csikszentmihalyi & Rochberg-Halton, ; Mccracken, ; Rochberg-Halton, ; Rubenstein, ). Recent studies have examined the link in various contexts and in relation to particular objects. For example, one study which explored the materialities of care in relation to people with dementia in care homes found handbags to be an important object for female residents; the 'rummaging in handbags' sought to create boundaries of privacy and facilitated a sense of identity (Buse & Twigg, , p. 11). Another study observed how people living in a dementia care unit reconfigured materialities to make a space for themselves and/or other residents (Cleeve, ). Other work, which does not include people with dementia, but is nonetheless relevant, found that interactions with material culture (such as hand-held vacuum cleaners) help to facilitate interaction and meaningful relationships (Lovatt, , ). These findings highlight the significance of functional objects in the context of a care home. Moreover, they confirm how achieving a sense of home can be made easier if a person has access to resources that maintain and cultivate identity (Cooney, ; Molony, ).

While objects are often overlooked in dementia care research or viewed as secondary to person-person relationships or variables to control (Ceci et al., ), they can be useful mechanisms offering insights into relationships supporting choice, control and agency (Araujo et al., ; Driessen, ). For example, using a dining table to maintain a sense of dignity, control and agency (Kroger & Adair, ); a television to feel connected to the outside world (Nord, ) and a mobile phone to maintain a spousal relationship (Ursin & Lotherington, ). The present study focused on functional objects (such as curling tongs or a hairdryer) that enable people to take part in activities of daily life.

The freedom to choose the life one wishes to have, which may include using objects, is an important aspect of citizenship (Pfister, ). It is especially relevant for people with a disability, as opportunities to live a meaningful life are often curtailed by others (Lid, ) through materialist practices. Take, for example, Ursin and Lotherington's () report of a young man with dementia living in a nursing home who used his mobile phone each day to speak with his wife. On two occasions, staff found the mobile phone in the laundry, on bringing a third replacement mobile phone, staff informed his wife that the mobile phone would be kept in the staff room. Furthermore, she was asked not to call him on the mobile phone as staff could not hear it ring. As a result, the man's chance to communicate with his wife on his own terms was lost, indicating a link between the materialities of care and citizenship, which we aim to examine further in this research.

In this article, we use a material lens to examine access to and use of functional objects by people with dementia living in a care home. Rather than focusing on how such practices mediate care, we examine how functional objects might afford social citizenship. For a care home resident, the practice of citizenship might be as mundane as curling their hair with tongs, the point is that the action of using this functional object enables the resident to enact identity, exert some control and take some responsibility for themselves. Increasingly, scholars are calling for more recognition of the capacity of people with dementia to take control, and regard 'citizenship-in-and-as practice' as a potentially useful framework for realising that (Nedlund et al., ). The aim of this study is to add to that small body of work by focusing on access to and the use of functional objects in the context of people with dementia in care homes.

METHODOLOGY

The findings discussed in this article form part of data collected through doctoral research completed in 2019. The study was given ethical approval by the NHS Health Research Authority Social Care Research Ethics Committee (HRA Social Care REC) (Reference number: 17/IEC08/0003). The primary objective of the study was to understand how objects manifest in the everyday lives of people with dementia living in care homes. A secondary objective was to examine whether social citizenship was a useful lens to examine this. An ethnographic approach enabled observations of object-person relations in everyday life in the care home for residents, staff and relatives. It would provide insight into how functional objects are used and by whom. While the study was conducted in two care homes in southern England, this article draws on the findings of one 'Southcote Manor'.

Southcote Manor is a two-storey local authority residential care home offering care to 30 older adults including people with dementia. Each floor has corridors, with a mix of residents' rooms, communal areas and bathrooms. Staff offices are located on the ground floor and residents move between floors when accompanied by staff. All bedrooms are of similar design but varied in size. Most rooms have identical furniture such as a bedside table, wardrobe, sink and commode. Some residents have brought in a small item of furniture from home, such as a chair, but this was often discouraged due to limited space and health and safety concerns.

A 4-week hanging-out period (Bernard, ) commenced at Southcote Manor in July 2017. This provided an opportunity to build rapport prior to data collection and answer any questions about the study. Time was spent in communal areas, talking with residents, staff and relatives, taking part in organised activities, helping staff at mealtimes and eating with residents. Most residents and relatives appeared to accept the presence of a researcher, some residents mentioned enjoying having a new person to talk to. Some staff found it difficult, at times leaving the room when observations were taking place, and on two occasions challenging her presence. The hanging-out period allowed time to gain some familiarity of the building, memorise door codes and observe care home life. Data collection was carried out by the first author between the months of August and November 2017.

A convenience sampling technique was used to recruit three groups of participants to the study: (1) residents with dementia, (2) staff employed for a minimum of 6 months and (3) relatives who regularly visited the care home. It was important to elicit these differing perspectives to understand how decisions are made about functional objects. The registered manager of Southcote Manor acted as a gatekeeper and distributed participant information sheets to residents, staff and relatives. The first author met with potential participants to discuss the study and answer any questions before deciding whether to take part.

Thirty-nine participants took part in the study: 15 residents with dementia (11 females and four males, average age 88) 16 staff (12 females and 4 males, average age 46) and eight relatives (six females and 2 males, average age 60). Of the 39 participants who took part in the study, 38 were of white British origin, and one member of staff was Romanian.

Data were collected over a 16-week period and included participant observations, object-elicitation interviews (with residents), in-depth interviews (with staff and relatives) and documentary research methods. Participant observations took place in the communal areas of the care home, 3 days per week, 4 hours per day, between the hours of 8:00 AM and 8:00 PM. This resulted in 144 hours of participant observations. Participant observations and field notes were written to capture informal conversations and object-person interactions such as who used the remote control for the television, who carried out domestic chores and whether residents had choice over where they sat.

Object-elicitation interviews were conducted with four residents, using the objects in a person's room to guide the interview; asking questions such as: 'shall we have a look at some of the things in your room?', 'how often do you use this?' and 'who decided what was brought in?'. Nineteen in-depth interviews were conducted: eleven with staff and eight with relatives. Most in-depth interviews with staff and relatives took place in the staff office or staff lounge, and one interview took place in a relative's home. Within the interviews, we explored which objects were important to the interviewee and how it might feel to have those objects taken away. We also explored who was involved in deciding which belongings residents could have and reasons why some objects were viewed as acceptable for care home life while others were not. Documents such as: quality standards documents, individual resident care plans and an inventory log were analysed to understand how objects were considered within care practices.

Consent procedures

Written consent was sought and provided by all participants except those who were assessed as lacking capacity to take part in research. For those participants, a personal consultee (relative, friend, spouse or independent advocate) provided either written or verbal agreement. People with dementia assessed as lacking mental capacity were included in participant observations when a personal consultee provided a favourable opinion. In line with HRA Social Care REC recommendations, only residents assessed as having capacity to take part in research were eligible to take part in object-elicitation interviews. In addition to this, a process consent method was used at every participant observation; this involved approaching each participant at every data collection point, making clear that research was taking place, what it involved and asking whether the participant was willing to take part.

Data analysis

A framework analysis approach was used, using Nvivo 11, to enable structured and factual questions to be asked of the data (Ritchie & Spencer, ; Srivastava & Thomson, ). A prime concern was to describe and interpret what was happening within a particular context, how objects were used in practice and their inclusion in policy and practice documents.

The first step of familiarisation provided an opportunity to gain an overview of the data provided by the three participant groups. Transcripts and field notes were read and audio-recordings listened to while making notes about their content. The second stage of the analytical process was to organise the data in a meaningful and manageable way to aid future exploration and the retrieval and examination of data later on. The formation of framework categories informed by a priori concerns and emergent issues allowed the identification of categories that best fit the research questions. This also meant that the framework included the interests of the researcher and issues pertinent to participants (Ritchie & Spencer, ).

A set of preliminary codes were produced in step 1 pulling together all data sets, providing overall themes about what was said within interviews and what was observed in practice. The next step was to ask specific questions related to the research question such as: (1) How are decisions made relating to personal possessions and who is involved in decision-making?; (2) Who is responsible for bringing personal possessions into the care home, and how are future objects acquired?; (3) How are functional objects used in care homes and who uses them? and (4) Are measures taken to control objects in the care home and if so what measures and by whom?

Codes created through interview and observational data were merged and overlapping codes were collapsed. These were reorganised into four categories: (1) decision-making relating to the ownership and use of functional objects, (2) access to functional objects to participate in everyday life, (3) safety or the perceived risk of having or using functional objects and (4) relationships with objects, ownership and use of functional objects.

The third stage of the analytical process involved systematically applying each interview transcript and field note to each framework category and comparing these to practice and policy documentary sources. This revealed how decisions were made, by whom and whether these decisions were influenced by policy guidance.

In stage 4 of the analytical process a framework matrix was generated. This provided a simple summarised version of the interview and observation data (see Table 1 for matrix staff interview data).

Safety

If they said they wanted to do their hair, the carers are quite happy here to let them, they would stay there, supervising them while they did their hair anyway. They do get that option anyway. They can't just take it down

Decision-making

No, usually it's the families. We have done it for a couple of residents, when we've gone back to their home for them to get some belongings, but usually the family members have taken over and unfortunately some of them dump stuff before even letting the residents look at what's left and things like that

Taking action

Say I went into the dining room and I feel a little bit low, I could do with someone bringing out maybe one of my old knitted jumpers or something, or a picture. I personally would hope that a carer would listen to me, and then go and grab that item for me, so I could look at it or cuddle it.

Control

I know some have come in with mobile phones, so if they wanted to phone their families, but a lot of the families don't want them to have telephones

The final stage of analysis was to use the matrices to pull together the key characteristics of the data and map and interpret the data as a whole. This provided an understanding of how decisions were made about objects, and who was involved, who had access to objects and how they were used and provided reasons why some residents had control over objects while others did not. It was also useful in illuminating contradictions and inconsistencies within and between groups and data sets.

FINDINGS

Applying a material lens to care home life provided an opportunity to explore what citizenship looked like for those who took part in this study. By focussing on objects and viewing care home life through a material lens, we were able to determine whether citizenship was supported in care practices for people with dementia.

The study presents two key findings. First, we found a 'lack of opportunities to return home to collect personal possessions'. Second, we found a 'lack of control over personal possessions and functional objects'. From this, we developed the framework of 'material citizenship'.

Lack of opportunities to return home to collect personal possessions

This study found that residents who moved directly from hospital to the care home lacked the opportunity to return home to collect their belongings. Furthermore, similar to other researchers (Innes et al., ; Lindley & Wallace, ), residents were often not involved in deciding which belongings they wanted to take and lacked control over what happened to their items. Take, for example, 94-year-old Karen. Karen was admitted to hospital following a fall at home; it was there the decision was made for her to move directly to a care home, and she was not given an opportunity to return home to collect her possessions. Karen had lived at Southcote Manor for 3 months when the study began, she would talk about her experience of moving into the care home at times with anger and other times with hopelessness at her lack of agency. She spoke of how decisions were made for her and how little control she had over her life and her possessions. Karen mentioned that she would have organised her own removals had she had control over her finances. Instead, she had to wait for her nephew to find the time and 'hope' that he would bring the items she had requested. Karen felt disempowered by the process of moving into the care home and the lack of opportunities to organise her possessions.

This excerpt shows that while relatives usually take on the task of dealing with a person's possessions, staff had on occasions returned to a person's home to collect belongings. This was not common practice and residents did not accompany staff when doing so. Staff mentioned being the 'go-between' for residents, taking requests for items they wanted, contacting relatives to pass on this request but having no control over the outcome. Confounding our view that once a person becomes a 'resident' they lose control of their possessions.

Previous research shows that rather than viewing objects as a way in which to engage in normal social interactions, objects can become problematic (England & Dyck, ). The present study found the downsizing process was difficult for all concerned. An example of this is shown in a son's explanation of why he excluded his mother when organising her belongings:

[If]I hadn't done it that way, and my mother had been there, I most probably would have still been there today, trying to clear it all out because it would have been, oh no I can't, I don't want to get rid of that; where are you going to put it; there is no room to move a five-bedroom house.... into a one-bedroom home. (Finlay, relative, interview)

For Finlay, the task of sorting his mother's belongings was onerous; Finlay lived in the south of England, his mother's house was in the north of England; he worked full-time and had two young children. Supporting a person to organise and collect belongings can be a complex process, fraught with difficulties. It is, therefore, unsurprising that relatives and staff may want to avoid this to reduce possible complications.

Although this is a plausible assumption, particularly as a person may not have chosen to live in the care home in the first instance, given that none of the participants in this study had an opportunity to return home, there is no evidence to support this claim. Nevertheless, it means that people have very little control or choice over personal possessions. Not affording people the chance to return home is a practice that denies new residents the right to access their personal possessions; we suggest, indicates a lack of material citizenship.

This emphasises an imposed dependency; Karen was positioned as a passive recipient rather than an active citizen, she was unable to arrange delivery of her possessions, instead she had to wait for her nephew to bring the items to her. Karen mentions that she never saw some of her belongings again, demonstrating how little control she has.

Lack of control over personal possessions and functional objects

In this case, the object was removed by the member of staff without informing her. This study found no evidence of risk assessments taking place concerning functional objects. Instead, staff made subjective decisions on an ad hoc basis. Given the lack of guidance in policy and practice guides and the focus on safety, this is perhaps unsurprising.

The local authority care home quality standards, included as a documentary source, provided guidance encouraging certain objects into the care home. The document listed items such as toiletries, soft furnishings, photographs and a small item of furniture. Clothing should be able to withstand a 60-degree wash, be a size bigger than usual and have an elasticated waistband to assist staff with dressing and undressing. Objects were viewed and controlled through a service lens rather than as items important for enabling citizenship, or as a mechanism for gaining a deeper understanding of a person's historical biography and present identities (Buse & Twigg, ). The guidance showed the tension around these spaces, as both a 'home' and as a regulated workplace.

Due to ethical considerations, it was not easy to ascertain how decisions were made about clothing. No observations were allowed in residents' rooms. However, on one occasion, Karen was asked if she planned to attend the organised music session; she said she did not want to go in the clothes she was wearing. She had on a red cardigan that she did not like but 'they' insisted she put it on, and a floral skirt she said she would not have chosen to wear. Karen independently changed her clothes regularly throughout the day, with staff commenting 'oh you've got changed again'. This suggests she had some freedom to access her clothes and change them as and when she pleased.

Karen asked for curling tongs, but staff viewed this item as risky; they thought she might burn herself or another resident as they frequently walked into each other's rooms. Instead, staff provided Karen with plastic curlers, which she found difficult to use. This shows how perceptions of risk can act as a barrier to citizenship in a care home context (Buse & Twigg, ).

Carrying out domestic chores was important to Pippa. She often became agitated if staff cleared away plates or began tidying the kitchen area. Pippa clearly struggled with executive functioning, often not knowing what to do with objects; nevertheless, staff used techniques such as guiding Pippa's movements or showing her where to place objects, akin to 'scaffolding' (Österholm & Hydén, ). Staff supported her in carrying out chores considered risky such as cleaning tables with detergent, washing up pots and cutlery, filling the dishwasher and making cups of coffee. When asked why Pippa was supported in these daily activities, the response from staff was 'because she's young'. This shows another layer of complexity in object-person relations - that is, it is not simply about cognitive ability and risk but the perception of age and what that represents.

DISCUSSION

In this article, we suggest that residents living with dementia at Southcote Manor lacked control over functional objects. Many residents were not involved in decision-making relating to the belongings they brought from home or were unaware of what had happened to them. Like other researchers, we found that people with dementia are routinely excluded from the decision-making process (Fetherstonhaugh et al., ). In the context of this study, functional objects manifest in risk-averse practices. While risk management is necessary in care provision and can be a positive process, it can also disempower and be restrictive if done so discriminatorily. Examining decision-making and the use of objects through a social citizenship lens is useful in drawing out care practices that do or do not afford people with dementia the same opportunities as others. For example, Karen was denied access to her curling tongs because staff considered it risky. Whereas Pippa was encouraged to carry out domestic chores with items considered risky. A strength of material citizenship is that access to objects can enable people to live the life that they want to live and can be facilitated by care home staff. This may be more applicable to people with milder degrees of cognitive impairment; however, objects can also function as an external memory support (Hyden, ) which could also be useful in care practice.

While other studies have referred to residents' interactions with their material surroundings as providing the ability to continue routine practices such as organising their surroundings, cleaning and hosting (Lovatt, ; Nord, ), this study only observed one person enabled to carry out these tasks. Instead, staff were often observed discouraging interactions from taking place. By including people with dementia and applying a material lens to care home life, we were able to draw out subtle injustices in care practice. Injustices that were not intentional, but nevertheless present. There was also a lack of guidance in the management of possessions, or an understanding of the importance of object-person relations in policy and practice documentation. By emphasising the importance of the materialities of care, applying a material lens to care practice, we were able to show a continuous reduction in control and independence for people with dementia living in a care home.

Other health sociologists have argued that by paying more attention to materiality, 'everyday routines could become important occasions for care' (Cleeve et al., , p. 126). Our analysis confirms this and takes it further by showing how material practices, specifically access to and use of functional objects, have significance for social citizenship. For instance, disposing of a person's belongings when they move into a care home is an example of a 'material practice that is made mundane and inconsequential' (Latimer, , p. 379). Importantly, from our perspective, it shows a disregard for a person's need for familiar objects to participate in life - that is, social citizenship. The value of material citizenship is that it focuses on the nuances of a person's day-to-day routines and rituals and the functional objects they need to keep these going. Material citizenship is, thus, defined as:

the right to be included in decision-making relating to personal possessions and the right to have opportunities to use functional objects to perform everyday tasks.

The ability to make decisions and have those decisions upheld is central to self-determination (Fetherstonhaugh et al., ). Material citizenship aims to promote this by focusing on a person's control over and rights and relationships with respect to functional objects, including, for example, being able to participate in everyday life practices such as household chores. Additionally, the concept aims to help elevate an understanding of the significance of functional objects and the role they can play in care assessments and care planning. This is particularly relevant for people living with dementia in care homes, as policies and procedures are often designed to meet physical care needs rather than promote social citizenship.

The idea of material citizenship aligns and builds upon knowledge related to the materialities of care and social citizenship providing a pragmatic way of operationalising a person's rights and responsibilities. Material citizenship provides a framework with which to educate, implement and evaluate the presence of social citizenship in a care home environment. By focusing on how decisions are made about belongings, and the access people have to functional objects, a balance can be achieved which provide assessments of proportional and reasonable risk of physical harm and citizenship. This would require conversations to take place among residents, relatives and staff to explore and formally agree on a plan of how a person can be supported to live the life they would like to live, including the objects needed to achieve this. For those with more advanced dementia, who may have difficulties with verbal communication, objects could be utilised as a method to explore how a person with dementia wants to live their life. Embedding material citizenship in organisational documentation is a potentially useful way of helping staff consider the role of functional objects in care. That said, larger-scale studies are needed, which involve more diverse groups of people with dementia, to understand fully the value and limitations of material citizenship as a conceptual framework for care.

As with all studies, there are several limitations. First, the data presented here were collected from a single study site in southern England and, therefore, no account is taken of variability between care homes, regionally, nationally or globally. Second, object-elicitation interviews were perceived as problematic by the ethics committee, and so people assessed as lacking mental capacity (i.e. a large proportion of the care home population) had to be excluded from taking part in the study. Third, in line with HRA recommendations, it was not possible to observe how functional objects were used during personal care and in resident's room. As such, the findings only provide a partial picture of people's access to and use of functional objects in care homes.

CONCLUSION

The growing number of people with dementia moving into a care home and increasing pressure with regard to a person's rights raises urgent questions about peoples' access to and use of functional objects. We have argued for the importance of bringing a material lens to sociological and psychological discussions of citizenship and care, specifically in the context of persons with dementia in residential care homes. Findings from this study suggest that functional objects are overlooked in the context of care homes and there is a lack of guidance for care workers. Thus, residents depend upon the whim of individual staff members, as to whether they can access a particular object, rather than through an organised and structured care planning and risk management process. Understanding how functional objects manifest in care practices made visible the lack of social citizenship afforded to people with dementia in this setting. We suggest it would be valuable for care practices to combine a material citizenship approach with existing care practices. This would elevate the importance of object-person relations, allowing staff and relatives to recognise that functional objects can help a person maintain identity and influence how they are perceived.

Finally, the concept of 'material citizenship' usefully extends our understanding of social citizenship by foregrounding the role of objects in peoples' lives. Specifically, it shows how functional objects are not only an extension of the self (Belk, ) but also making decisions about and using functional objects enable people to take control and practice everyday citizenship, such as taking care of oneself and others. As such the concept, once it has been more widely applied and assessed in the dementia field, may be useful in other areas of health and social care where object-person relations are important, but often overlooked, including hospitals and care homes for people with learning disabilities.

ACKNOWLEDGEMENTS

Our sincere appreciation goes to all of those who took part in the study, and to the Alzheimer's Society for funding this study.

AUTHOR CONTRIBUTION

Kellyn Lee: Conceptualization (lead); Data curation (lead); Formal analysis (lead); Funding acquisition (supporting); Investigation (lead); Methodology (lead); Project administration (lead); Validation (lead); Visualization (lead); Writing-original draft (lead); Writing-review & editing (equal). Ruth Bartlett: Conceptualization (supporting); Data curation (supporting); Formal analysis (supporting); Funding acquisition (lead); Investigation (supporting); Methodology (supporting); Project administration (supporting); Supervision (lead); Validation (supporting); Visualization (supporting); Writing-original draft (supporting); Writing-review & editing (equal).

ENDNOTES

In line with HRA Social Care REC recommendations, data from care home one were excluded from analysis and write up due to being a pilot site.

Pseudonyms are used to disguise the identity of the care home and participants.

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

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Material Citizenship: An ethnographic study exploring object-person relations in the context of people with dementia in care homes

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Corresponding Author School of Health Sciences, University of Southampton, Southampton, UK Correspondence Kellyn Lee, Faculty of Environmental and Life Sciences, School of Health Sciences, University of Southampton, Southampton, UK.

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I think we have to rethink how we approach dementia - we tend to think about what people can't do rather than what they can. 

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I think we have to rethink how we approach dementia - we tend to think about what people can't do rather than what they can. 

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When we do find ourselves thinking about what they can no longer do, we should redirect those thoughts to exploring ways to support them to gain similar enjoyment in doing something similar where they can. When I was young, people with disabilities were so limited in options, particularly around sport.....but just think about the scope of the Paralympics!! Dementia poses different challenges, but surely if we used the same innovative brainpower we can achieve some amazing solutions!

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Hi, I'm Jane Ward, one of the panel for the Rethinking Dementia event.

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Hi, I'm Jane Ward, one of the panel for the Rethinking Dementia event.

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I had an amazing few years supporting Mum while she was living with Vascular Dementia. She had such a positive spirit and  a wicked sense of humour - but we also survived some really tough times, especially when she got an infection.

She was my inspiration for the work I do now around rethinking dementia!

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Can I add a new image? This is how I tell myself I should think of people living with dementia.

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Can I add a new image? This is how I tell myself I should think of people living with dementia.

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I took this photo in 2013.
This was my Annemarie, my aunt in Canada who taught me how to Kayak in 1982 on my first visit to stay with her and my Uncle Ray.
On this visit she was living in a care home with a diagnosis of Vascular Dementia, but I had taken her out for the day to attend the memorial for Ray at a friend's lakeside home. I was a little concerned when she announced she wanted to go out in the kayak....but her Canadian friends seemed to think it was Ok. I did wonder how to explain to her care home if it all went wrong....but as you can see.....she not only knew exactly how to manage, but had a great time. This picture took pride of place on her door in the care home too remind the staff that she wasn't 'a daft old lady', and though she never again remembered I was her niece - she always remembered I had taken this photo.

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Boats and boating--Equipment and supplies

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I agree absolutely, and it’s interesting that you mention people with disabilities and the Paralympics. There has been a huge shift in thinking about disability. It’s not long ago that many people with physical and intellectual disabilities were unnecessarily confined in institutions, whereas that would be unthinkable now. We’ve learned that disability doesn’t reside inside a person. Unsuitable environments and unhelpful attitudes can ‘disable’ people - so if we turn that around and think of ways to ‘enable’ people, we can find solutions. People living with dementia are coming up with amazing solutions – see for example

https://www.alzheimers.org.uk/blog/life-after-dementia-diagnosis-guide-setting-reaching-goals

Rather than representing dementia as a ‘disease’, would it be more helpful to think about it in the framework of (dis)ability? Might that promote more of a focus on what people can do, or could do with the right support, and on finding solutions?

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Hi, I'm Linda Clare, a social scientist, clinical psychologist and dementia researcher who also has experience of supporting family members living with dementia. I've learned a lot from the people with dementia who've been involved in our research. I feel very strongly that we need to encourage different ways of understanding dementia to improve the experience of living with dementia.

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On Saturday 27th November, between 10am and 12pm we are holding a free event to launch our new toolkit. We'd love for you to join us either online or in person at The Forum on the University of Exeter campus. Click the link to book your free ticket!

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living well with dementia: lessons learned from covid-19

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living well with dementia: lessons learned from covid-19 tickets

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living well with dementia: lessons learned from covid-19 exeter

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living well with dementia: lessons learned from covid-19 exeter tickets

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Living Well with Dementia: Lessons learned from COVID-19

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Eventbrite - IDEAL Programme presents Living Well with Dementia: Lessons learned from COVID-19 - Saturday, 27 November 2021 at The Forum, University of Exeter, Exeter, England. Find event and ticket information.

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Notwithstanding the possibility that some could be affected by seeing / hearing negatives about dementia, a true, balanced picture must be painted.  Not everybody is living and dying well with dementia, and it is often those who need the help most who are the ones who are ‘suffering’ the most.  Suffering is the negative word that has been castigated by living-well advocates, but some / many people with dementia do suffer, and so do their carers.  When trying to look on the bright side, we must not lose sight of those who are living badly with the effects of dementia.  If everybody was living well with it, we wouldn't be talking about it. And we need people and media to talk of it.

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I agree Linda, if we are even going to start thinking about trying to change the term dementia for a different one, we would need to have a thorough consultation with as many people who have dementia as possible, and ensure it's done with people from all ethnic groups and ages, to get a wide view. Dementia is a difficult word because of the associations with the more sinister terms, demented and demonic. 

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I agree Linda, if we are even going to start thinking about trying to change the term dementia for a different one, we would need to have a thorough consultation with as many people who have dementia as possible, and ensure it's done with people from all ethnic groups and ages, to get a wide view. Dementia is a difficult word because of the associations with the more sinister terms, demented and demonic. 