Introduction
The ability to manage money is essential for independent functioning (Marson et al. Reference Marson, Kerr, McLaren, Schaie and Willis2016). Over the last two decades, there has been interest worldwide from policy makers and academics in the ability of older people to manage money, primarily for four reasons. First, almost all societies are experiencing ageing populations and increased numbers of older people living alone (Office for National Statistics 2021, 2022; United Nations Department of Economic and Social Affairs 2022). Second, ageing populations are associated with rising incidence of cognitive impairment (Nichols et al. Reference Nichols, Steinmetz, Vollset and Vos2022), a substantial proportion of which remains undiagnosed (NHS Digital 2022; Wittenberg et al. Reference Wittenberg, Hu, Barraza-Araiza and Rehill2019). Third, there is increasing complexity of financial products and services associated with later life and concomitant scams targeting older people (Burnes et al. Reference Burnes, Henderson, Sheppard, Zhao, Pillemer and Lachs2017; Burton et al. Reference Burton, Cooper, Dar, Mathews and Tripathi2022). Fourth, there have been substantial changes in how financial services are made available to consumers, including the increased use of telephone and digital access, which may exclude older people (Lu et al. Reference Lu, Yao and Jin2022).
Beyond this, financial literacy in populations at large varies greatly and so people, as they age, are not all starting from the same base. In many countries, including the UK (Finney Reference Finney2018) and internationally regardless of the stage of economic development (Lusardi and Mitchell Reference Lusardi and Mitchell2011), people have limited or highly variable financial skills. The problem may be compounded by poor numeracy. In the UK around one in five working-age adults can only perform basic arithmetic operations with numbers and money, and half lack the skills for more complex operations (OECD 2024).
Furthermore, the ability to manage money is very sensitive to cognitive impairment and may be one of the earliest cognitive domains to decline (Boyle Reference Boyle2013; Peres et al. Reference Peres, Helmer, Amieva and Barberger-Gateau2008). This presents as a range of challenges, including an impaired ability to manage day-to-day activities through difficulties in remembering currency value or procedures such as cash machine withdrawal; impaired planning and decision-making through difficulties in understanding terminology, documentation and implications of decisions; and increased susceptibility to abuse (Lichtenberg et al. Reference Lichtenberg, Stoltman, Ficker, Iris and Mast2015; Marson Reference Marson2016).
This picture is further complicated by the fact that managing money in later life (and proxy management of another’s money) involves more than just deploying a set of skills rationally; it is influenced by a range of sociocultural and psychological factors that have shaped people’s interactions with money across their lifecourse. Money not only serves as a means to obtain goods and services but is also deeply personal and emotive, acting as a semiotic system of communication about one’s psychological, interpersonal and social states (Llewellyn Reference Llewellyn2016). It can simultaneously enable freedom and create dependency, highlight social obligations and imply social distinctions (Kraemer et al. Reference Kraemer, Jakelja, Brugger and Nessel2022).
Despite the increasing complexity of later-life finances, rising rates of cognitive decline associated with ageing populations, and the deeply personal significance of both money and cognitive decline, there has been surprisingly little research at the intersection exploring the psychosocial and emotional impacts of impaired mental capacity to manage money. The present article helps to address this gap by focusing on three research questions:
(i) What are the psychosocial and emotional aspects for older people and families of navigating deteriorating mental capacity to manage money?
(ii) How are these issues presented in publicly available information resources?
(iii) To what extent do public information resources reflect people’s experiences?
Background
International research has shown the extensive influences that emotions can have on financial management and decision-making, directly and indirectly (Zaleskiewicz and Traczyk Reference Zaleskiewicz, Traczyk, Zaleskiewicz and Traczyk2020). A meta-analysis of experimental work on the role of emotions in decision-making shows that people do not approach risky or uncertain decisions rationally (Bartholomeyczik et al. Reference Bartholomeyczik, Gusenbauer and Treffers2022). Emotions surrounding financial matters may also be influenced by socio-economic status. Financial support interventions for people in low-income groups may generate feelings of shame, guilt or anger (Marston et al. Reference Marston, Banks and Zhang2018), and older people across the socio-economic spectrum may experience anxiety at the thought of visiting a professional financial adviser for retirement planning, with higher levels seen in low-income groups (Van Dalen et al. Reference Van Dalen, Henkens and Hershey2017). People who base their self-worth on financial success may experience more conflicts over money with their partner and lower relationship satisfaction (Ward et al. Reference Ward, Park, Walsh, Naragon-Gainey, Paravati and Whillans2021). This may be particularly the case for people in low-income groups as a lack of money can have a negative impact on sense of self (Daly Reference Daly2017). Poorer people also experience increased cognitive load as they weigh up the financial implications of everyday choices at a lower threshold than affluent people (Shah et al. Reference Shah, Zhao, Mullainathan and Shafir2018).
There is relatively little knowledge about how these issues impact older adults and their spouses or adult offspring when discussing and addressing potential challenges of declining mental capacity to manage money (Wood and Lichtenberg Reference Wood and Lichtenberg2017). Evidence reviews have shown that cognitive impairment is itself deeply personal and emotive, both for the person experiencing decline (Górska et al. Reference Górska, Forsyth and Maciver2017) and for their family, who usually end up as providers of care and surrogate decision-makers (Bressan et al. Reference Bressan, Visintini and Palese2020). People may be happy to talk about some aspects of later-life finances, like downsizing homes and equity release, but tend to avoid talking about aspects like potentially funding care, because they are associated with negative visions of the ‘fourth age’ (Higgs and Gilleard Reference Higgs and Gilleard2014; Price et al. Reference Price, Bisdee, Daly, Livsey and Higgs2014) as well as uncertainty about disease trajectory, care needs and the care system (Baxter et al. Reference Baxter, Gridley and Birks2023). Some carers can feel substantial burden from having to take over managing another’s finances, overwhelmed by impending decisions (DaDalt et al. Reference DaDalt, Burstein, Kramer, D’Ambrosio and Coughlin2016), and conversations about support to manage money may be very difficult or avoided altogether, as they can threaten role and identity (Bisdee et al. Reference Bisdee, Price and Daly2013). Conflicts between people with dementia and their relatives can reduce the agency of the person with dementia (Hautsalo et al. Reference Hautsalo, Pirhonen and Pietilä2024), and there can be strong differences in opinion among family members about how to manage a relative’s money (Arksey et al. Reference Arksey, Corden, Glendinning and Hirst2008).
Even when people are willing to engage in financial discussions following a dementia diagnosis, support to manage money remains a major area of unmet need. Globally, only 10–15 per cent of people with dementia and under 10 per cent of carers report being offered legal or financial advice (Gauthier et al. Reference Gauthier, Webster, Servaes, Morais and Rosa-Neto2022). In the UK, despite a raft of policy initiatives over the last 15 years to improve dementia support (Baker et al. Reference Baker, Parkin and Jarrett2019; Department of Health and Social Care 2023), over a third of people are not offered any post-diagnostic discussion about arrangements like lasting power of attorney (a legal mechanism via which an individual with capacity can appoint others to make decisions on their behalf) (Alzheimer’s Society 2022). There is also an absence of knowledge about the experiences of older people living alone with no informal care.
Theoretical framework
Our analysis draws on relational sociology, which posits that the household is ‘a prime site for cooperation, negotiation of conflicts of interest and settlement of disagreements’ (Burgoyne and Kirchler Reference Burgoyne, Kirchler and Lewis2008, 132). Theorists have shown that households do not share resources equally or equitably, and that money management is often a manifestation of patriarchal power both within households and in the public sphere, resulting in gendered power relations that have been relatively impervious to change (Bennett Reference Bennett2013; Çineli Reference Çineli2020; Vogler et al. Reference Vogler, Brockmann and Wiggins2006). However, this body of work has rarely considered older people or intergenerational money management, and very little theorising exists within the sociology of the family or the sociology of money to understand how families manage money in the face of existential health threats (Price Reference Price, Bennett, Avram and Austen2024). Nevertheless, some important ideas relevant to our current study emerge from this field. First, theorists have pointed to the complexity of intra-household relationships, which comprise ideological, discursive and psychosocial elements. Sonnenberg (Reference Sonnenberg2008) showed that money relations were deeply connected to identity and that when people were managing money, they were in essence managing their personal and social identities, and Bisdee et al. (Reference Bisdee, Price and Daly2013) showed that, between older couples, considerable emotional work is undertaken through the medium of money management to preserve individual and couple identities in the face of cognitive decline. Second, the seminal work of relational economic sociologist Viviana Zelizer has shown that money is deeply embedded in social and emotional life, challenging the idea that emotions and money are separate spheres, and showing instead that they are intertwined in everyday transactions (Zelizer Reference Zelizer1995, Reference Zelizer2000, Reference Zelizer2010). Affected by a moral economy of care, managing a parent’s or spouse’s finances may be expected to be influenced by duty, love and cultural expectations about care-giving and respect. Family members who control another’s money may feel a responsibility to act in their best interests, but conflicts may well arise over autonomy and decision-making, and the ambiguity of what is fair or appropriate across generations might create tensions. Third, Dixon and Wetherell (Reference Dixon and Wetherell2004) have argued that the daily relational practices that people perform should be the starting point for understanding household behaviour.
It is therefore important to root our understanding in how people practise and conceptualise their actions vis-à-vis each other: money behaviour is likely to result in considerable emotion and identity work, shaped by social norms and moral obligations, and the reality might be far more complex than ‘outsiders’ might wish to imagine. The present article aims to explore the emotive and personal nature of navigating deteriorating money management skills in the context of cognitive decline.
Methods
Design, recruitment and participants
This qualitative study explored the experiences of money management and cognitive decline across professionals, older people and their families (Hall et al. Reference Hall, Straub, Price and Glover-Thomas2023), using semi-structured interviews triangulated with documentary analysis of public-facing information resources on the topic of mental capacity and money management.
Interviews were conducted in Greater Manchester, a city-region in northern England with a population of 2.8 million and substantial socio-demographic variability. Professionals were eligible if they were social sector professionals, defined as those providing social care and support for older adults working in public, private and third sector organisations outside the National Health Service, for example local authorities, charities, housing associations and domiciliary care services. Older people (aged 65+) were eligible if they were receiving or considering support to manage money in later life and had capacity to consent to participate (British Psychological Society 2020); family members (aged 18+) were eligible if they had experience of supporting an older relative with cognitive decline to manage money. All participants were required to have a sufficient level of English. Participants were recruited via a purposive strategy supported by key stakeholders to publicise the study across different boroughs and organisations. We also contacted support organisations, attended carer groups to promote the study and adopted a snowball approach whereby participants passed on information to potentially interested colleagues. Interested participants were invited to contact the research team for further information.
Interview data collection and analysis
Interviews with professionals covered their experiences in assessing mental capacity in the domain of personal finances, supporting older people with declining capacity to manage money, training and guidance, confidence in addressing this topic and perceived effectiveness of current practice. Interviews with older people and family members covered their history of managing money, experiences of declining mental capacity and financial planning, and information and support. Interviews were conducted individually or in pairs (e.g. two professionals working in the same team; a married couple); in person, via online videoconference (Zoom/MS Teams) or by telephone; according to participant preference. Prior to interview, the lead researcher shared a participant information sheet and consent form, and offered a telephone call to discuss the study.
Interview data were professionally transcribed (intelligent verbatim) and managed via NVivo 12 software. Transcripts were analysed using thematic analysis (Braun and Clarke Reference Braun and Clarke2021). Analysis was led by Authors 1 and 3 with emerging interpretations discussed in depth at each stage with Authors 2 and 4. Analysis was informed partly by our prior understanding of these issues, but stayed close to the data to be largely inductive. First, we read the transcripts through for familiarisation and made notes on points of interest. Second, we coded the data via a semantic approach. Third, we refined and reduced the codes through a more latent review that captured common patterns underlying some of the initial codes, and grouped the codes into themes. Finally, we sorted the themes into four overarching themes relating to capacity assessment, legal literacy, support provision and emotions. The present article focuses on emotions.
Documentary data collection and triangulation with interviews
We conducted a document analysis (Bowen Reference Bowen2009) to identify how the topic of money management and cognitive decline is presented within publicly available information resources, and to appraise the alignment of this information with the experiences portrayed within the interview data. We searched the websites of major national organisations relating to health, ageing and money advice. We also searched the internet using the terms ‘dementia AND finance’ and ‘dementia AND money’ in Google. Our search was not designed to be exhaustive, but was intended to capture the major resources that people would likely find. The organisations searched are shown in Table 1; a list of resources included in the analysis is provided in Supplementary file 1.
Table 1. National organisations searched for information resources
These information resources were triangulated with the themes from the interview data. We extracted key information into an MS Word table showing how declining mental capacity to manage money is conceptualised within these resources. We applied a deductive approach in which we considered the extent to which the themes generated from the interview data were reflected in these resources, noting points of congruence and convergence (Bowen Reference Bowen2009).
All interview and documentary data were collected between October 2021 and October 2022.
Public involvement, ethics and consent
The development of the study was informed by extensive public consultation work regarding the study design and potential ethics issues in discussing the topics of cognitive decline and personal finances. The study was supported by an advisory group of seven people with lived experience of this topic.
Ethics approval was obtained from the NHS Social Care Research Ethics Committee in August 2021 (ref. 21/IEC08/0020). Data were recorded, stored and managed in compliance with University of Manchester protocols and Research Ethics Committee requirements.
All participants provided written or verbally recorded informed consent. Before starting each interview, the researcher reaffirmed consent and offered participants the opportunity to ask any further questions. We did not encounter any ethical issues during the data collection.
Findings
We recruited 41 participants and conducted 33 interviews (25 individual, 8 dyadic). We interviewed 28 social sector professionals (Table 2). These participants were 19 women and 9 men, mainly White British, with a median length of time in their current post of four years. We interviewed 13 older people and/or family members (Table 3): 6 men and 7 women, mainly White British, with a median age of 70 (IQR 62–73; range 49–81). The majority of interviews were online (27 participants), with the remainder conducted via telephone (6 participants) or in person (8 participants). Interview duration ranged from 38 to 79 minutes, with means of 60 minutes (professionals) and 53 minutes (older people/families).
Table 2. Professional participants
Notes:
* letter indicates the city-region borough
** Roles may be described in broad remit terms to preserve anonymity.
Table 3. Family participants
Notes:
* letter indicates city-region borough
We first present participants’ reflections on the psychosocial and emotional aspects of money management and cognitive decline under four themes, and then consider the extent to which these themes appear to be recognised in public information resources. Quotes from interviews are attributed according to the professional (P) or family (F) participant identifiers in Tables 2 and 3.
Declining capacity to manage money is very harmful to self-worth and identity
Money and possessions were seen to embody a strong sense of self-worth and identity, and therefore the relationship between these internalised representations and declining mental capacity to manage money is complex. Some family participants reflected on challenges in dealing with parents’ assets and possessions because of the deep associations these items had with the parent’s self-identity. One married couple, F7 and F8, reflected on their experience of supporting F7’s late mother. They highlighted how the mother had come from a humble background, describing her as ‘penny wise but pound foolish’ (F7, son) as she liked to handle cash and scrutinise her bank statements for everyday outgoings, but lacked any advanced financial knowledge about the overall value of her assets or how to invest them. They described dealing with her property when she moved into a care home:
One complication is that when mum went into the care home, very happily, we already raised with her the possibility of renting her house out. She owned her own home, the house I grew up in, and we never dared say we would sell it, even though it was fairly obvious she was never going to go back to the family home. (F7, son)
The above quote highlights how even though F7’s mother was reportedly happy to move into residential care, the family ‘never dared’ to tell her that they might sell her home, because of its personal significance. It appeared that renting the home out to generate ‘money coming in’ (F7) was deemed to be more aligned with her understanding of money that was intrinsically part of her identity as someone from a humble background who had raised a family in that home.
Another family participant (F1) talked about supporting her mother to move into smaller, more suitable accommodation. She highlighted how difficult decisions at this key transition point had cast her as the ‘bad person’ in her mother’s eyes, particularly given the emotional relationship her mother had with the family house:
She was very emotionally attached to the house because my dad…was an architect… She was living in the house that he had created… I had to organise everything [with the] solicitor, and I was the person that had to go through the whole emotional baggage of, ‘Right, Mum, you’re only moving into a single bedroom flat, you can’t take this; we have to take it to the charity shop’… It was very stressful indeed. I was the bad person that was forcing her to get rid of the prized possessions. (F1, daughter)
Other findings showed how the potential negative impact of impaired capacity to manage money on an older person’s sense of self could impede their willingness to discuss the issue with their families. One participant living with dementia (F11), who had worked in a senior administrative role prior to his diagnosis, recalled how he had been demoted twice after starting to make mistakes because of cognitive impairment, before losing his job altogether. He had initially withheld this information from his family out of embarrassment, until after he received his diagnosis:
I was losing my self-respect, I was losing my dignity… Things that I should be in charge of, you know, things that I used to be good at, I was no use at all… Until I got my diagnosis, I kept a lot of things that was happening in work to myself… Even when I was demoted, I kept that to myself because of the embarrassment and the humiliation. (F11)
Pre-diagnostic decline in ability was so challenging to this man’s sense of identity, both professionally and personally, that he could not talk about it with his family until after his dementia diagnosis, when he said he ‘felt vindicated’ (F11).
There were several related examples of generational assumptions cited as influencing older people’s willingness to discuss financial matters. Some female social sector professionals felt that older men could be reluctant to speak to them about challenges with managing money as they saw money as a masculine topic and believed that ‘females shouldn’t have anything to do with the finances…’ (P12, manager, housing provider), but it could also stem from a more general sense of paternalism:
[W]ith older men, it’s [name of male colleague] who they will open up to, because they still view us as younger women…sort of their child’s age…quite paternal…not wanting to burden us. (P19, manager, housing provider)
However, simply ensuring that a male professional is available to discuss impaired capacity to manage money with older men may not be sufficient. One male social worker reflected on various strategies over multiple visits to encourage an older man living on his own to acknowledge that he might need support to manage his money:
I had probably gone back three or four times… I had to think to myself, okay, he didn’t like it the way I said it this time around, how can I explain it differently?… You’ve got to try and be able to have that sense of conversation and to almost bring them round to that decision as well. Where they’re like, ‘Yeah, you’re right, I didn’t pay that bill, you did help me with that, okay, I might benefit from that [support]’. (P14, social worker)
Another professional gave an example of a woman with dementia who had lost all capacity to manage money, but whose care home had provided her with fake bank notes to carry around:
I was having a chat with her, and she thought she had to pay me. I [saw] what I thought was at least four or five £20 notes, and I’m saying to her, ‘Close that purse, put it back in your bag…’ Actually, it’s the [care] home that just prints off these notes and allows people to walk around with them… I can understand how people who might lack capacity globally for finances still have that sense of worth about having something in their pockets. Especially from a generation [that] very rarely dealt with anything that wasn’t cash. (P27, independent mental capacity advocate)
This shows the importance – even in the highly institutionalised context of 24-hour residential care – of acknowledging the association of money with someone’s understanding of their self-worth and identity, even when their capacity to manage money may have disappeared.
This theme highlights myriad ways in which declining mental capacity to manage money may challenge people’s sense of self as it collides with their lifelong understanding and schemas of money, property, work and independence.
Family relationships: the need for trust and the potential for conflict and change
Declining capacity to manage money impacted on family relationships. Unsurprisingly, trust was very commonly cited by all participants as crucial when discussing matters of money, cognition and proxy money management. Families and professionals referred to how family agreement and being on the same ‘hymn sheet’ (F2, P14) about how to support an older relative was important, and how situations were much more complex if there was discord. One participant had been employed in a bank and enjoyed financial administration, yet also said, ‘I don’t like discussions with family about money’ (F4). This highlighted that management of money within families involves more than just financial skill. One participant reflected on her family context as one of four siblings. She said that the role of supporting their mother had fallen to her and her younger brother, but that this was challenging for their relationship:
[I]t put quite a bit of strain on my relationship with my younger brother at times, because he and I are the ones that have to handle [their mother’s financial affairs], and he thinks I’m the bossy big sister… so it increases family tension. (F1, daughter)
Family and professional participants both felt that proxy management of an older person’s money by an adult child could redefine the parent–child relationship. One participant (F9) had managed his mother’s money for nearly 20 years, initially because she had a long-term health condition before her cognition began to decline. His father used to manage the couple’s money, but after his parents separated ‘there was a gap that need[ed] filling’ and he had to assume the responsibility. At first, this had been on an informal basis, such as taking his mother’s bank card to do her food shopping, but as her cognition started to decline they had set up power of attorney. He reflected on the deeper meaning of acting under this formalised legal arrangement:
You start to understand, okay, so what does that actually mean as a power of attorney when it comes to managing someone’s money? Because it certainly isn’t just almost having a virtual card that you had in that informal setting… [Y]ou do get the feeling that you’ve got these outside agencies keeping tabs on you… It changes the financial relationship you would have with a parent. (F9, son)
The legal formalisation of support via power of attorney and its associated potential external scrutiny contributed to reshaping the relationship to a greater extent than providing informal support that may not be visible to anyone outside the family (or the parent–child dyad). However, informal support could also be contentious. Some professionals felt that the changes to family relationships because of proxy financial management could lead adult children to restrict their parent’s spending, possibly for their own future benefit:
I think sometimes the role gets blurred regarding who’s the parent and who’s the child, very much so, and they [adult children] feel as though…‘well, no, you can’t have that’… I don’t know whether that’s because they’re seeing the money as an inheritance… (P12, manager, housing provider)
This change was seen as a common source of conflict and could hinge on whether the parent viewed the intervention as helpful or controlling:
They don’t want their family interfering in their finances… Kids are supposed to look to their parent, not the other way round, and you see that conflict a lot… It depends how the person who may be heading towards capacity issues feels about it, whether they see it as supportive or as losing control of their lives. (P1, support coordinator, charity)
This view was linked to wider issues about the extent to which people acknowledged declining mental capacity and the need for support to manage their money. One participant (F2) highlighted that her mother had not acknowledged her cognitive decline and initially did not want to entertain the idea of power of attorney. Another participant (F6) described how her mother had been extremely independent for the majority of her adult life and did not want her to use power of attorney:
I think because she’s always been so feisty, so strong, so independent, never had a man that looked after her financially or paid bills, she’s always done it, that she felt she was losing control of her whole life by me having, in a folder in my cupboard, power of attorney paperwork. (F6, daughter)
Here is an example of an older woman who may have defied generational stereotypes about marriage and finances. It also shows how even potential support from her closest relative was seen to be highly unwelcome.
These findings show how declining mental capacity to manage money may amplify long-standing familial conflicts or give rise to new conflicts. These conflicts may be directly about finances but may also be about broader relational issues such as decision-making, responsibilities and provision of support or, potentially, inheritance. They may also fundamentally reshape long-standing roles and relationships.
Framing support as ‘there if we need it’ may be helpful but can come unstuck
A common approach used by professionals and families to encourage older people to talk about support to manage money was to frame discussions as planning for a future that may or may not happen. One participant living with dementia described this kind of planning as ‘liberating’, as it had put his mind at ease should this future be realised (F11). However, many participants talked about emphasising the possibility that this future scenario may not occur. One example was provided by F2, who reflected on the conversation she and her sister had had with their mother:
We said to Mum, with any power of attorney, that it’s there if we need it, and if we don’t need it, then we won’t use it… She did query it, but we’d said it was in case of need, it was in case of need. And, yes, she signed it, and she’s never questioned it since. (F2, daughter)
This subtle difference in framing was strongly related to the threat to sense of self-worth and loss of control highlighted in the earlier themes. Rather than reassuring someone positively that support is in place, the idea of ‘there if we need it’ in examples like this tended to be used to reassure people that proxy money management would be a last resort. Participants often cited this as a successful strategy to convince relatives to sign the necessary paperwork.
However, there was other evidence to complicate this picture, when perceptions about proxy decision-making changed with cognitive decline. For example, the participant (F6) whose mother had been very independent recalled how she had previously been comfortable in signing power of attorney, but had become suspicious and reticent as her cognition declined:
I’m going back a few years now where there was no problem whatsoever [with signing power of attorney]… However, in the last two years, she said to me one day, ‘give me all that [power of attorney paperwork], you don’t need to know anything, give me all that’… I shop for my mum, I cook, I clean, I wash, I iron, I do the gardening, do everything… When I go shopping for her, she’s not forthcoming with giving me the money [back]… She’s become very, very suspicious… She’s been adamant that she would make it…I can’t say make it as difficult as possible, although I want to, because I’m angry, she’s made it so not easy. (F6, daughter)
This highlights a scenario in which the daughter supported her mother domestically in many different ways, yet her mother refused to allow support to manage money and sometimes acted to the financial detriment of the daughter by failing to reimburse her for shopping. It shows how a potential future that previously may have been seen as acceptable because it was unlikely to come to pass had become much more of a threatening reality to the mother and also led to practical and emotional challenges for the daughter.
In summary, the framing of formal support mechanisms such as lasting power of attorney as a future safety net was commonly employed by families. However, this framing can take on subtly different forms, either as welcome and reassuring or as only a last resort that may not be necessary. These forms appear to be curated based on sensitivity to how proxy money management is (anticipated to be) perceived by the person with cognitive impairment.
Financial organisations’ focus on procedures and processes may lack empathy
The final theme captures how participants talked specifically about dealing with financial organisations, particularly in the context of proxy money management. Some family participants reported positive experiences and seamless processes in registering powers of attorney with banks. In one couple (F12 and F13), F12 was living with dementia and failing eyesight, and although they had discussed the latter with the bank in order to receive documentation in large print, they had not informed the bank about the dementia diagnosis. They had signed power of attorney paperwork, but had not registered it with the bank and hoped that the process would work should they feel it necessary:
I assume I just tell the institution that [name of daughter] and I both have power of attorney and show them the evidence… Hopefully we’ll have done the hard work. (F13, husband)
The ‘hard work’ was seen to be discussing the topic as a family and completing the paperwork. However, other participants who had done this hard work had subsequently faced more, unexpected hard work when navigating processes of implementing power of attorney. For example, one participant highlighted substantial difficulties in registering power of attorney with her mother’s bank:
That’s actually what has really started to irritate me…trying to prove you’ve got power of attorney… I spoke to a girl [at the bank] and she said, ‘Oh, yeah, this is what you have to send us’. She didn’t tell me they wanted the original… They wouldn’t even accept a photocopy… Although I’m the first person named on the power of attorney, my brother is the second person named, and it’s one of these ‘jointly and severally’ things [in which multiple attorneys can be named but one can act individually]… They wanted identity and residency documents from my brother as well…it was just ridiculous. (F1, daughter)
Lack of procedural clarity, and misunderstandings, could be a source of frustration. Another participant felt that there was a fundamental misunderstanding in some organisations about what power of attorney actually means in the context of dementia, giving an example of a company that wanted her mother to sign some documents even though she [the daughter] had power of attorney. She elaborated that organisational emphasis on procedure and process may lack empathy that the proxy decision-maker is in the midst of an emotionally challenging situation:
It’s not easy to have power of attorney and want to speak to somebody in a financial institution about somebody who has Alzheimer’s. You’re taking control of their finances and it’s very hard…because you know that that person that you’re speaking on behalf of has lost it, they’ve no longer got any understanding of finances at all. And it is a great responsibility to do that. And a little bit more compassion from these…companies…would help, because…you are speaking to them for a particular reason. A little bit of empathy and compassion would probably go a long way. (F2, daughter)
A different challenge when dealing with financial organisations could be an enduring emotional resonance of historically negative experiences with authoritative institutions. One professional working for an LGBT support organisation gave specific examples relating to older LGBT people. Such experiences were said to undermine people’s trust and therefore their willingness to seek support. The same participant highlighted other concerns about normative assumptions that might be made by financial organisations about people’s lives and relationships:
[Ninety] per cent of the people I work with are talking about end-of-life care and how to set up wills and power of attorney… The [financial services] system might assume that you’ve got a blood relative that can be your next-of-kin and will be in your will… A lot of LGBT people are saying to me… ‘I want to make sure it’s all set up just in case they try and get in touch with family who I’ve not spoken to for years’ … There’s just this real worry of handing things back or [that] involving family will reverse the progress that you’ve made… Your legacy or who you fought to be might be under threat. (P17, programme lead, charity)
This once again highlights the connection between declining capacity to manage money and self-identity, and highlights potentially catastrophic implications in this particular context. It is reasonable to assume that the central messages about hesitancy in seeking support because of prior negative experiences, and fear of damaging assumptions, would be transferrable to people from other social groups who have experienced discrimination or have damaged family relationships.
These findings highlight that financial institutions can make life even more difficult and there is a need for sensitive approaches that acknowledge the psychosocial complexities of potential cognitive decline and proxy money management.
Triangulation with information resources
We examined 65 online resources published by 20 national organisations to inform the public on key issues regarding later-life finances and cognitive decline. The links to these resources and their corresponding identification numbers are seen in Supplementary file 1 (e.g. ‘ID1’ refers to document 1).
These resources largely outline the potential benefits of receiving support to manage money and setting up formal mechanisms like power of attorney. One example from the Alzheimer’s Society, the most prominent national charity advocating for people with dementia, includes a list of benefits of making power of attorney, including ‘reassurance’ for the donor and ‘making things easier’ for the donor’s family (ID11), and stresses the agency of the donor both in choosing their proxy and in clarifying their wishes and preferences. A minority of resources explicitly acknowledge the perspective of loss of control and the gravity of the proxy role:
For them, it means giving up financial control and trusting someone else with their money. For you, it means taking on responsibility for someone else’s financial future. So it isn’t something to be done lightly. (ID47)
However, this quote is one of the few examples where the fear of losing control is explicitly acknowledged. It is perhaps unsurprising that the majority of the resources take a positive framing, but our qualitative data suggest that this message may not be connecting with everyone.
The emotional complexity of money tends to be acknowledged around initial discussions about someone supporting someone to manage their finances. Some contain guidance and tips for having difficult conversations about money (e.g. ID47, ID53, ID54, ID65); however, the potential complexities and ongoing challenges are much less articulated. Although some of the more comprehensive resources highlight that ability to manage money is a range of skills on a continuum (e.g. ID15), most resources portray it as a clear binary ability. They also imply that limitations in capacity will be clear and will be jointly recognised by everyone involved, with many examples of phrases like ‘if there comes a time’ (e.g. ID6, ID11) or that someone ‘will come to a point’ (e.g. ID28) when they can no longer manage their finances. Many resources also suggest that there is a clear time when the more formal power of attorney will be needed, which echoes some of our participants’ use of ‘there if we need it’ as a strategy to introduce discussion with their relatives. Examples include ‘the document might sit in a drawer for years before it’s needed’ (ID65) and ‘once registered…it can be used immediately or held in readiness until required’ (ID57). There is very little indication that people may change their perspectives, that a progressive illness like dementia may alter people’s perception and personality, and that people may become suspicious of relatives whom they once trusted.
The resources generally portray managing money on someone’s behalf as having an initial degree of procedural complexity, but ultimately that people can expect things to be straightforward once they have understood these procedures. Many resources are very process-oriented, with clear descriptions of various options such as power of attorney and deputyship, and how to set up and register them. This is particularly the case in government/Office of the Public Guardian (OPG) documents (ID33–ID41), which is unsurprising given that the OPG is the governmental body that polices the actions of surrogate financial decision-makers. Many other resources we identified provide links to the relevant government/OPG pages (e.g. ID18). Overall, there is little within the information resources to suggest the potential for surrogate decision-makers to experience ongoing challenges. Rather, it is generally presented in normative terms of what is supposed to happen, for example once power of attorney is registered, the attorney will be able to interact with financial organisations with no obstacles. There is little acknowledgement that the process may not always work as it should or that it may be extremely stressful.
Discussion
This article highlights the emotive and personal nature of navigating deteriorating money management skills in the context of cognitive decline. Interviews with older people, their families and social sector professionals supporting older people show that declining capacity to manage money conveys inherent complexities that strike at the core of people’s sense of who they are, including concerns about loss of control and threats to self-worth, family tensions and difficulties in framing discussions about future support. These nuances are not well reflected in public information resources, which are largely procedural.
Previous literature has highlighted that refusal of care and support by older adults (especially by those with dementia) is common (Backhouse et al. Reference Backhouse, Dudzinski, Killett and Mioshi2020; Newbould et al. Reference Newbould, Tucker and Wilberforce2022), for a variety of reasons including embarrassment, guilt, perceived threat to independence and different understandings of what constitutes support (Allen and Wiles Reference Allen and Wiles2014; Breheny and Stephens Reference Breheny and Stephens2012). This literature has focused on formal social care input and specific interventions such as assistive technologies or support with personal care. The present article adds to this literature by highlighting that discussions and actions about support to manage money are highly sensitive, may be unwelcome to many older people and require careful approaches. The gendered perspectives highlighted in our findings, particularly that some older men may not welcome discussing money management with female social sector professionals, need to be considered in the context of social care workforce demographics; in England, 82 per cent of care workers are female (Skills for Care 2022).
The findings show that families and care professionals often positioned conversations with older people around capacity to manage money as part of future planning and setting up support that is ‘there if we need it’. This was also a common framing in public information resources, can be a useful way in to discussions and may be reassuring for people. However, this framing can come unstuck in the context of cognitive impairment if people change their minds or act in ways contrary to their thinking at the time they set up the formal arrangements like power of attorney. These findings align with evidence Advance care planning. Two recent evidence reviews highlighted that care planning can generate complex emotions for the person concerned and for their family, with possible strong differences of opinion; in the context of dementia, views might change and people may be inconsistent in their choices (Hall et al. Reference Hall, Rowland and Grande2019; Wendrich-van Dael et al. Reference Wendrich-van Dael, Bunn, Lynch, Pivodic, Van den Block and Goodman2020). The wider literature on proxy decision-making highlights emotional challenges for relatives who are often unprepared for the role (Su et al. Reference Su, Yuki and Hirayama2020), and the present article highlights similar challenges in the financial domain. Crucially, being prepared may come not from having more information but from being comfortable with uncertainty in complex decision-making and from having trusting relationships (Thiede et al. Reference Thiede, Levi, Lipnick and Van Scoy2021). The present article highlights that all these issues appear to be of paramount importance in the context of financial management and cognitive decline, but are not acknowledged explicitly in public information resources; nor are coping strategies suggested. Work conducted in the UK more than 15 years ago highlighted that information resources were focused on legal and administrative issues, with far less detail about the day-to-day realities of managing someone’s money (Arksey et al. Reference Arksey, Corden, Glendinning and Hirst2008). This picture does not seem to have changed very much since then.
Findings about difficult experiences in using power of attorney or in seeking support from financial institutions echo recent third-sector work in the UK that has called for greater inclusivity in the retail sector for people with dementia, and a review of the process of power of attorney (International Longevity Centre 2022). Our findings regarding fears among older LGBT adults of heteronormative assumptions made by financial organisations reflect similar concerns about the potential erosion of LGBT identity from moving into long-term care (Fasullo et al. Reference Fasullo, McIntosh, Buchholz, Ruppar and Ailey2022), showing that this fear is also salient in the domain of financial support, perhaps long before institutional care is needed. These findings all highlight the concept of ‘polyphonic legality’ (Harding and Peel Reference Harding and Peel2019), which holds that legal artefacts like power of attorney are determined not just by rules of official law but by multiple actors (e.g. the individual themselves, the family member acting as attorney, the financial services worker at the end of the telephone) who shape their implementation. It is unsurprising that the majority of public information resources we explored reflect the position of official law and describe what is supposed to happen. However, it would also be useful if these resources were to more consistently acknowledge the contextual complexity in which the voices, perceptions and attitudes of various actors determine real-life interpretation and implementation, so that people are better prepared for the inherent uncertainty and variation in practice.
More broadly, this article makes several significant contributions to the development of theory in this field. First, we add to a growing body of research arguing that we need to bridge economic and emotional perspectives if we are to understand how individuals and families navigate their now highly financialised lifecourses. This is especially important in understanding the sociological and psycho-dynamic processes of everyday life, thinking about how public services and support for families should be organised, and informing the regulation of financial services in consumer interests. Little attention has been given to relational issues and almost none to navigating money management within families in the absence of concerns about financial abuse.
Second, while there are substantial bodies of research globally on intergenerational financial transfers, and on how couples manage their money, the intimacy of money management within families (often across generations) in the face of cognitive decline – increasingly an everyday practice for millions of families across the globe – has received almost no research attention; nor has how social care and support services navigate this complex space. This study suggests a need to focus on the implications of progressive loss of autonomy and the shifting power dynamics that can occur in the presence of a family member with dementia. We might usefully begin to explore how moral economies, care ethics and bounded rationalities might help to explain the relational work that is shown here to take place across services and families.
Third, we add to an emerging field of research challenging the rational actor model in financial guidance (Agunsoye Reference Agunsoye2024; Agunsoye and James Reference Agunsoye and James2024). Policy makers, financial institutions and civil society actors tend to assume that financial management for people with dementia is a straightforward and rational technical process. However, we show that these processes are beset with emotional complexity and distress, which will likely, without more consideration, lead to sub-optimal outcomes for individuals, families, firms and societies.
Finally, we suggest that focusing on this often prolonged and liminal period of life which is private, stigmatised and often hidden (Bisdee et al. Reference Bisdee, Price and Daly2013) can act as a bridge between scholars who argue for a more nuanced understanding of financial behaviour that accounts for the complex interplay between individual circumstances and systemic factors, and those who argue that neo-liberalism privatises social risks, shifting economic responsibility behind the closed doors of the private household (Cooper Reference Cooper2017; Federici Reference Federici2020; Lynch Reference Lynch2022). Household members are left bewildered and emotionally drained in this space, with little help to navigate the emotional and relational landscape in which they find themselves. This active privatisation is widely evidenced in the documentary analysis of government, industry and civil society documentation in this study, where money management was repeatedly constructed as a technical process, with no ambiguous boundaries and no complexities in implementation. These are fruitful areas for future research seeking to understand family responsibilities and experiences under neo-liberalism.
Strengths and limitations
A key strength of this study was its robust qualitative approach to an extremely under-explored topic, using a purposive sampling strategy and engagement with professional and community organisations across a socio-economically and culturally diverse city-region. We interviewed a wide range of professional participants working in a broad range of social sector roles and organisations. However, despite our extensive networks, we struggled to recruit social workers and domiciliary care staff and therefore the perspectives of people working in these roles are limited. We were also able to recruit only older people and family participants who were almost all of white British ethnicity and who were comfortable talking about the topic with professional researchers after a short introduction. We were unable to recruit any older people living alone, which is likely a reflection of the sensitivity of the topic but remains an important gap for future research.
Conclusion
Our study shows that declining mental capacity to manage money can strike at the core of people’s sense of who they are, leading to strong tensions and difficulties in discussing support. Support is often framed as ‘there if we need it’; this can be reassuring, but may be challenged if there are subsequent disagreements and changes in perspectives about the detail and timing of support. These nuances are not well reflected in public information resources, which largely emphasise administrative procedure. Financial organisations may lack empathy that declining mental capacity to manage money is extremely challenging and does not just necessitate the rational deployment of financial skills and administrative procedures. There is a greater need for recognition of the emotional and psychosocial complexities it presents to older people with impaired capacity and to their families and friends who are acting as proxy decision-makers, and for support services.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S0144686X25100275.
Acknowledgements
We would like to thank all the professionals and members of the public who took part in this study. The topics of money and mental capacity can be challenging to discuss; without people’s willingness to take part, we could not have conducted this research. We would like to acknowledge the Greater Manchester Ageing Hub (with particular thanks to Jo Garsden), the Greater Manchester Older People’s Network (with particular thanks to Liz Jones), the Greater Manchester Public and Community Involvement and Engagement Panel, and the Manchester Institute for Collaborative Research on Ageing, for their support with this study and with the preliminary consultation work that informed this research. We would like to thank all the people we have consulted with during the preliminary work and the study itself. Special thanks go to our project advisory group for their enthusiastic support, encouragement and thoughtful input throughout the study: Phil Adamson, Mike Dodd, Pamela Eaton, Kim Hughes, Basma Issa, Dean Owens-Cooper and Maria Walsh.
Financial support
This project was funded by the National Institute for Health and Care Research (NIHR) under its Research for Social Care within Research for Patient Benefit (RfPB) Programme (grant reference number NIHR201863). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Competing interests
The author(s) declare none.
Ethical standards
Ethics approval was obtained from the NHS Social Care Research Ethics Committee in August 2021 (ref. 21/IEC08/0020). All participants provided written or verbally recorded informed consent.
Open access
