Introduction
The risks of people with dementia to general abuse, mistreatment, and neglect are internationally recognized (Kemp and Mosqueda, Reference Kemp and Mosqueda2005; Sethi et al., Reference Sethi2011). When focusing on financial abuse, there are concerns that dementia renders an individual more vulnerable than others because they become less able to protect themselves, have declining abilities to identify and manage risks, may not report concerns, or fail to be taken seriously. These concerns are widespread and are evidenced by international prevalence estimates of the extent of abuse among older people generally. The National Elder Mistreatment Study identified financial abuse by a family member as the most common form of abuse among older community-dwelling people in the USA (Acierno et al., Reference Acierno2010). The UK National Elder Abuse Study, broadening the range of possible perpetrators, found financial abuse to be the second most common form of abuse (O'Keeffe et al., Reference O'Keeffe2007). The prevalence of financial abuse is increasing (Rabiner et al., Reference Rabiner, O'Keeffe and Brown2006; World Health Organization, 2008).
There is particular difficulty in obtaining prevalence estimates of financial abuse among people with dementia whether they live alone, with family, or in care homes. Cambridge et al. (Reference Cambridge, Beadle-Brown, Milne, Mansell and Whelton2006) identified links between types of abuse and residence, finding that only 7% of cases where the victim lived in residential care reported financial abuse whereas they constituted 25% percent of cases among community-dwelling people. It could be speculated that the reasons for this are that care home residents have limited access to money but, overall, financial abuse is generally hard to identify and prove (Mulroy and O'Neill, Reference Mulroy and O'Neill2011). Mansell et al. (Reference Mansell, Beadle-Brown, Cambridge, Milne and Whelton2009) suggested that those living alone are particularly vulnerable to financial abuse by family members, or, to a lesser extent, by home care workers.
Not all studies of elder abuse address financial abuse or exploitation. Cooper et al. (Reference Cooper, Selwood, Blanchard, Walker, Blizard and Livingston2009) excluded financial abuse in their study of people with dementia, and their systematic review of elder abuse (Cooper et al., Reference Cooper, Selwood and Livingston2008) noted that researchers do not often ask family carers about financial abuse. This is worrying as evidence suggests that inability to manage finances can be one of the strongest predictors of perceived carer burden (Razani et al., Reference Razani2007). Lack of mental capacity appears to spur action when suspicions arise (Davies et al., Reference Davies2011). This may account for differences between prevalence rates of research and professional experiences. Notably, those at risk may experience several types of abuse; a recent Irish study (Clancy et al., Reference Clancy, McDaid, O'Neill and O'Brien2011) reported the most frequent combination was psychological and financial abuse (20%).
Financial abuse is differentiated, to some extent, from crime, although much depends on legal definitions (Sethi et al., Reference Sethi2011). In England, early definitions were wide: “Financial or material abuse, including theft, fraud, exploitation, pressure in connection with wills, property or inheritance or financial transactions, or the misuse or misappropriation of property, possessions or benefits” (Department of Health (DH) and Home Office, 2000, p. 9). Recent definitional debates highlight the importance of trust: “Being attacked or robbed by a stranger or an acquaintance is assault or theft but not physical or financial abuse. However, harms inflicted by those who have a formal relationship of trust or those who have otherwise assumed responsibilities and duties of care towards the victim, is both an assault or theft and physical or financial abuse” (Dixon et al., Reference Dixon2010. p 21). Other studies observed that relatives of people with dementia may not intend to abuse but may be confused when managing other people's money (Langan and Means, Reference Langan and Means1996; Baxter et al., Reference Baxter, Glendinning and Clarke2008) or hold “distorting” views about their “entitlement” to these assets (Tilse et al., Reference Tilse, Wilson, Setterlund and Rosenman2005; Setterlund et al., Reference Setterlund, Telse, Wilson, McCawley and Rosenman2007).
The aim of this study was to understand experiences and views of professionals responsible for adult safeguarding in local government (generally social workers appointed as Adult Safeguarding Coordinators (ASCs) in English social services departments), focusing on financial abuse of people with dementia. We were keen to identify risk factors or triggers for safeguarding referrals to local authorities (the lead agency in England and Wales). In the UK, ASCs are mostly specialist senior social workers, working with a range of professionals in social care services, health services, and commercial and voluntary services to protect vulnerable adults. They liaise with the police and criminal justice agencies. Their job role usually incorporates responding to enquiries, investigating suspicions, support for victims, together with providing leadership and expert advice in local areas.
We also wanted to explore barriers and facilitators in minimizing risks of financial abuse for people with dementia. Despite concerns about financial abuse, few studies have done this. To the best of our knowledge, this study is the first to report adult safeguarding professional experiences about financial abuse among people with dementia in the context of specific legislation (Mental Capacity Act (MCA) 2005). The MCA provides a substantive legal framework for decision-making in England and Wales when a person has lost decision-making capacity such as in severe dementia, notably the right to appoint proxy decision-makers in advance of loss of capacity (Lasting Powers of Attorney (LPA)) and a system of substitute decision-making through court-appointed decision-makers (Deputies) if LPAs are not in place. These English experiences are offered as evidence of professional responses to concerns about the risks faced by people with dementia to financial abuse. These may be relevant elsewhere. In the USA, for example, in the absence of formal or oral directives, the “substituted interests’ model” is also adopted (Sulmasy and Snyder, Reference Sulmasy and Snyder2010).
Methods
Participants and recruitment
The recruitment of participants was guided by a purposeful sampling approach aiming for representation of this diverse professional group, rather than theoretical diversity. Participants were recruited from London, southern, eastern, and north-west England. This was the third round of interviews with some ASCs and all 15 from Time 2 were invited to participate. Of these, five individuals were new in post and five new local authorities were contacted to supplement those that declined participation. Fifteen interviews were conducted in total, two of which were with job-sharers. The questions asked were follow-ups of two earlier surveys of ASCs: (1) about their expectations of the MCA 2005 when it was newly implemented (2007–8) (Manthorpe et al., Reference Manthorpe, Rapaport, Harris and Samsi2009); and (2) emerging experiences around the use of the MCA (2009–10) (Manthorpe et al., in press). Building rapport was easier due to earlier interviews, and the interviewer was able to sensitively raise related topics that had been brought previously.
Interview schedule
The current interview schedule (Box 1) was developed based on responses raised in previous interviews and updated to include further exploration of financial abuse, investigation of concerns, and decision-making. ASCs were asked about a list of 12 possible factors that might form grounds for suspicion of potential financial abuse (Box 2). This list was compiled following analysis of multi-agency safeguarding policy and procedure documents, from findings of a review of money management in retirement that noted the absence of data about day-to-day financial transactions (Arksey et al., Reference Arksey, Corden, Glendinning and Hirst2008), and from research (Dixon et al., Reference Dixon2010) exploring conceptual definitions of elder abuse that touched on “gray areas” of financial abuse, legally and morally. An additional focus was the controversial question of selling one's home to pay for care. Data concerning direct payments to fund social care are not included in this analysis but are reported elsewhere (Manthorpe et al., Reference Manthorpe, Samsi and Rapaport2012). In preparation for the interviews, discussion was held with a representative of the national Alzheimer's Society to discuss experiences drawn to their attention.
Box 1: Interview schedule
1. How often do you come across cases of suspected financial abuse which involves a person with memory problems, cognitive impairment, or dementia?
• Never
• Not very often
• Quite often
• Frequently
2. From the list below what would you consider to be potential financial abuse or grounds for suspicion?
• Big differences between finances and living conditions
• Evidence of stealing from home or person
• Unknown befrienders or rogue traders
• Financial anomalies in accounts or bills
• Paying someone to do your shopping who charges £50 to do this
• Withdrawing unusually large amounts of money
• Well-recognized scams (e.g. winning the lottery abroad)
• Being asked to pay a workman/care worker cash to avoid VAT or National Insurance
• Misuse of Lasting Power of Attorney (financial provisions)
• Exerting undue influence to change wills or receive gifts
• Being required to sell your home to fund your care
• Other (please specify)
3. Do you take a different approach if you suspect a case of financial abuse which involves a person with memory problems, cognitive impairment or dementia from the investigation of any other allegation?
4. What is the best way(s) to prevent financial abuse in people with memory problems, cognitive impairment or dementia?
5. In your view, what would be the possible warning signs that someone may be ‘`at risk” before financial abuse actually takes place or is reported/spotted?
6. How could current safeguarding processes be improved for people with dementia who have been identified as being at risk of financial abuse?
7. Are there any barriers or facilitators you face in your work of safeguarding people with memory problems, cognitive impairment or dementia from financial abuse?
8. How do you think the move to personal budgets/self-directed support will affect the likelihood of financial abuse amongst memory problems, cognitive impairment or dementia? What might be the greater risk of harm and what might be the improved level of safeguarding?
9. Since we last talked to you about the MCA have you taken any actions in your services, e.g. revised policy and procedures? Please outline.
10. How familiar are staff working with people with dementia with the MCA (scale 0–5). Who knows it best, and who needs more training?
11. Have you made any referrals about the offences under the MCA? If so, what happened?
12. It is now some time that the MCA was implemented (2007), what do you think has been the most important development as regards safeguarding from the Act?
13. And have you been disappointed by anything?
14. Is there any thing else you would like to add?
Box 2: Grounds for suspicion
Big differences between finances and living conditions
All ASCs thought that this might give rise to suspicion although two cautiously commented that it was only a possible indicator because this could sometimes be a lifestyle choice: “We have some people who choose to live that way and hoard their money” (#6). If a person seemed “unbefriended or isolated, you would look in to it” (#7).
Evidence of stealing from home or person
This would be clearly and certainly an indicator of financial abuse although some added that there would need to be cause for safeguarding services to be involved, such as the person being vulnerable, otherwise it would be a police matter, as with other citizens. For some, their experiences were that stealing only came to light later on in inquiries (#2).
Unknown “befrienders” or rogue traders
This would be of concern to many; one local area had run a campaign about keeping safe around money. Another cited “befrienders” moving into a person's home or using their home to run their electricity (if neighbors), or falsely reporting themselves to be carers (#10).
Financial anomalies in accounts or bills
These could be used to identify fraud, for example if there was misuse of credit cards or similar. Some ASCs had experience of these being used as evidence of theft, citing unusual patterns of expenditure that were easy to identify once alerts had been raised. One ASC reported that they often were alerted to this; sometimes all was well but sometimes there was cause for action or intervention. People with severe dementia who seemed to be able to use an ATM from the evidence of their bank accounts were said to be a “classic case”; how did they know or recall their PIN?
Paying someone to do your shopping who charges £50 to do this
Although most participants saw this as potentially abusive and exploitative, some recognized that paying for care and support was sometimes very costly.
Well-recognized “scams,” e.g. “winning” the lottery abroad
Some ASCs had worked with local police forces on this subject and had run joint training programs. People had “got into a right state”; some had sent off their life savings. Such scams were commonly targeted at vulnerable people. Others were very aware of the vulnerability of some people to such scams who found it hard to terminate contact. Some ASCs thought these were common but that they often heard of such scams too late (#9).
Being asked to pay a workman/care worker cash to avoid taxes (VAT or National Insurance)
Some ASCs saw this as a way of encouraging vulnerable people to participate in illegal acts. It could be a way of overcharging and not issuing receipts or traceable paperwork. There was concern that this meant that the person was not operating “within boundaries” (#3). Others thought this was more of a “gray area” but would be very wary if it was happening to people with dementia as they thought that they would often be far less able to weigh up the risks and could be beguiled by ideas that it minimized the paperwork (#13) or if family or friends were involved. An initial screen of the situation was often needed (#1; #9). One ASC distinguished between a care worker acting in this way – where they thought this would be very suspicious, noting that an audit trail was very useful in carework, but knew that with trades people cash transfers were very common locally and so were generally of less concern (#11).
Misuses of Lasting Power of Attorney (LPA) (chosen financial proxy when decision- making impaired)
This was not an uncommon route for referrals to safeguarding (#12). There was no dispute that misuse was abuse and ASCs would investigate such allegations themselves or ensure that the authorities (Court of Protection) did. They were concerned that the person with LPA might not be acting more widely in the donor's (person with dementia's) best interests. Failure to register the LPA but acting as if it was in place was also reported (#11). Others reported that people holding an LPA could behave as if the money was theirs (#12).
Exerting undue influence to change wills or receive gifts
This was generally seen as “definitely worrying” (#7). Some had had experiences of cases of this (#6). Others reported that the local authority insisted that all their contractors (including social care providers) had clear procedures declaring that anyone exerting undue influence would be dismissed (#2).
Being required to sell your home to fund your care
This was recognized as a matter of public concern (with a minority of ASCs saying that it seemed to them personally to be inherently abusive). There was little to be done if the person was required to sell (e.g. by the local authority) – other than seeing that safeguards were in place about general moves, e.g. the appointment of an Independent Mental Capacity Advocate (IMCA) if appropriate. Others recognized that some families might be forcing an older person to sell and would “make off” with the money or it would not otherwise be in the older person's best interests. Here this might be seen as exploitation and referred to the police (#1).
Others
A variety of other possible indicators were identified, such as the person never appearing to have any money, or looking unkempt (#7). This link with neglect and even apparently self-neglect was raised by several as relevant to people with dementia. Neglect was also a possibility when relatives did not provide a family member with any money in residential care or failed to pay the fees of the care home (#3). The resident might then not be able to afford to have their hair done, or to buy toiletries (#11). In cases where a person was living at home, some bills might be left unpaid without the older person knowing this was happening (#4).
Data collection and analysis
Participants were assured of confidentiality and that questions were not a test of their knowledge. Interviews lasted between 45 minutes to an hour, and were conducted by the same interviewer at Time 1 and Time 2. All interviews were digitally recorded and transcribed. Any identifying details were anonymized. Ethical permission for this study had been acquired as required in 2008 by the local authorities; consent of participants to continue to take part in the study was recorded.
The anonymized data were subjected to framework analysis by all three researchers, involving five stages (Pope et al., Reference Pope, Ziebland and Mays2000):
1. Familiarizing – researchers began with reading transcripts repeatedly to familiarize and sensitize themselves to the data.
2. Identifying a thematic framework – researchers identified and delineated any emerging trends or consistencies in the text as “themes.” Mostly, a priori questions from the interview schedule were starting points for development of themes.
3. Indexing – each subsequent transcript was coded by application of the thematic framework to them.
4. Charting – according to emergent themes, the thematic framework was iteratively rearranged.
5. Mapping and interpretation – typologies are generally drawn up to explain findings. However, in this study, analysis stopped at the fourth stage, as the sample size was not large enough to draw comparisons.
As a final step, based on the principles of “respondent validation,” we emailed each participant and reported back on emerging findings. As most of the interviews had been over the telephone, this was considered a useful “check” of emerging findings to confirm that we were reporting on salient issues.
Results
Five over-arching descriptive themes were identified; these were reflected upon and are explored in detail below: observed incidence of abuse, impact of dementia on safeguarding actions, warning signs of financial abuse, preventing financial abuse, and barriers and facilitators in safeguarding.
Observed incidence of abuse
In order to encourage ASCs to discuss safeguarding and financial abuse, a key opening question encouraged them to consider how often they came across cases of suspected financial abuse involving a person with memory problems, cognitive impairment or dementia. Six participants reported this as “quite often” (participants nos.: 1, 2, 5, 9, 10, 14) and nine reported “frequently” (participant nos.: 3, 4, 6, 7, 8, 11, 12, 13, 15). This was a broad question designed to “test the water.” None felt that such cases arose “not very often” or “not at all.” This question was not designed to quantify referrals which are formally recorded because these are not always categorised by clinical or “user group” of “a person with dementia” or similar (Samsi et al., Reference Samsi, Manthorpe, Nagendran and Heath2011). It captures those queries and enquiries where there are levels of concern about risks of financial abuse to people with memory problems or loss of abilities to manage their daily lives that might be suggestive of a dementia. Most ASCs see this as a major element of their work:
“Financial abuse is one of the second biggest abuse [types] that occurs in [area], it's the second biggest of our alerts. There are a substantial amount of people with memory impairment which leads people to believe that they can get away with it.” (#7)
Current data collection systems make it hard to be more specific about the prevalence of actual abuse or the breakdown of formal referrals. One ASC (#1) noted that although financial abuse featured in about 12% of local investigations, they lacked information about whether alleged victims had dementia or cognitive impairment.
It was described as commonplace that even when family care was insufficient, services might be declined because their cost would reduce the family inheritance (#11). Within families, unusual interest in a person's financial affairs could be suspicious (#1), with some relatives described as being financially motivated (#2). One ASC reflected “having money doesn't protect you from abuse in old age; it can make you more vulnerable” (#2).
Other examples included valuables missing without explanation (#2); undue influence and theft (#3); misuse of direct payments (cash for care) (#13); taking the “free” item under a “buy one get one free” supermarket offer (#3; 11; 12); or “borrowing” money from an older vulnerable person:
“We've had cases where there's been pressure on to [make] ‘gifts’ where care workers have said ‘something's happened at home’ and the person has felt under pressure to give or lend money” (#3).
Outside quality or adequacy of care, ASCs reported cases involving identity theft (misrepresentation) such as falsely obtaining loans on behalf of people with dementia (#10, #11).
The impact of dementia on safeguarding actions
In cases of concerns abut people with dementia in safeguarding investigations and actions, ASCs would take following additional factors into account:
Engagement with the person with dementia
ASCs used face-to-face interviews and communication to recognize specific problems, but identified recall as one typical potential problem. In assisting with interviews or discussions, they sometimes involved an advocate (#11; 10). ASCs would assess a person's capacity or ability to make decisions about taking action (using the MCA); or “best interests” decisions would be made, while in others they would recognize that a person had the right to take some risks (#15).
Work with partner agencies
ASCs worked closely with the police, avoiding making assumptions about criminal behavior themselves. Overall, relationships with the police were described as good or improving. Police officers were useful in talking through what might be “best evidence.” This might mean that investigations or actions took longer. Gathering information could be an extensive process when a person with dementia was involved; for instance, it might involve seeking corroboration from many professionals, or covert action, such as video-recording. Particular care over record-keeping about allegations might be needed. Some found it useful to convene a strategy meeting swiftly to elicit multi-agency perspectives before taking action (#12).
Options
ASCs took account of legal options applicable to people lacking mental capacity, e.g. the offences under the MCA (Section 47). They needed to ensure that people with dementia were protected after the abuse to a greater extent than other people, e.g. if a person had been defrauded then they would arrange higher levels of support (#15). A small number of ASCs worked in local authorities with specialist teams who manage people's money at corporate level when necessary, such as when a person with severe dementia had no one else available or suitable to do this. These teams were generally regarded as expert in cases of suspected financial abuse (#8). They had, for example, extensive relationships with the police and with the Department of Work and Pensions (DWP), and could mount investigations of people's accounts and intervene when necessary. These ASCs were the only participants who spoke of success in regaining stolen assets for people who lacked capacity.
However, a number of ASCs considered each individual to be distinct and felt that there should not be separate processes for people with dementia as a group (#13; #9). As one ASC noted, people are vulnerable in different ways (#12) (Alves and Wilson, Reference Alves and Wilson2008). They argued that the tipping point was decision-making capacity and that a label of dementia did not always accurately reflect people's general abilities, lack of decision-making, or risk awareness (#1; 2; 7). Degrees of urgency of referrals varied and a public protection role needed to be assumed, even if the person with dementia might not immediately benefit, if there was concern about a possible abuser who was working with more than one person. Similarly, secondary prevention efforts were needed among people who had been abused. People with dementia were commonly reported as saying: “I don't want anything to happen, I just don't want them [abusers] to come to my house again” (#3), but the authorities might consider that investigation was warranted in the wider public interest. These decisions were taken in multi-agency strategy meetings. In relation to financial abuse, involvement of the police was considered routinely (#6) as part of a strategy meeting or in investigations. This perspective was summed up by one ASC, “We wouldn't focus on dementia; it's capacity to make a decision to protect themselves from financial abuse” (#2).
Warning signs of financial abuse
ASCs suggested a variety of potential situations indicative of vulnerability to financial abuse. Some focused on the person with dementia; others were related to their environment or social situation. There was general agreement that the appearance or behavior could give an indication that all was not well. Sudden changes were worth investigating. People who were isolated presented special risks – they might be in search of friendship, or they might have been bereaved and unable to manage money. Observation of the person with dementia was important, especially if comparable to a previous state.
External warning signs included the unkempt state of their home, having little food, bills lying unpaid, neglected housework and garden, indicating a struggle with managing daily activities and exacerbating their vulnerability. For example, one ASC reported that rogue traders and thieves looked for signs that a house was occupied by someone who was not apparently managing. ASCs acknowledged that warning signs were not definitive. One noted that there was scope to discuss warning signs with professionals working in dementia services more generally and to engage with people with dementia about possible responses and interventions (#11).
Preventing financial abuse
Almost all ASCs highlighted potential for people with decision-making capacity to draw up an LPA under the MCA. This was widely regarded as the most significant means of prevention. One ASC was cautious about the prevention abilities of LPAs as they felt that this might be more of an ambition than real but accepted that having an LPA was helpful generally. Allied to these positive views of LPAs, and acknowledging that they had to be drawn up while a person was still able to make this decision, ASCs were generally confident in the Court of Protection's systems of Deputies for people without LPAs. One reported that the associated Office of the Public Guardian was proving extremely helpful in managing an errant attorney in complex and difficult circumstances (#12).
For people with minimal income and savings, the DWP system of appointeeship (appointment of a suitable person to collect pension or benefits on behalf of another person, typically a relative) was viewed positively but far from the same extent. There were criticisms of the lack of checking those who took on the role of an appointee although even drawing up an LPA could not ensure protection, as this example indicated:
“We've done one [referral to the police concerning a person who had gained] power of attorney. He befriended a couple when they had capacity. The husband died and the wife gave him power of attorney. He moved into the property and he moved her into a small room. The [person granted] power of attorney was not willing to spend money on her – for nightdresses and things when these were asked for. We've gone to the Court – the Office of Public Guardian has asked for bank statements. We've moved the lady to a place of safety; he doesn't know where she is, while investigations are going on.” (#12)
In addition to individual planning to minimize abuse or common confusions over money management, ASCs referred to other measures, commonly:
• Setting up direct debits to pay bills from a person's bank account
• Restricting access to bank details and personal-identification-number
• Prohibiting junk mail or “cold calling” (unsolicited)
• Reducing unsolicited (scam) telephone calls by barring “number withheld’ calls.
In terms of primary prevention, participants called for the wider public to be aware of risks and to take steps if vulnerable situations emerged. Some ASCs were working closely with local government Trading Standards departments (e.g. around the anti-scamming “Think Jessica” campaign; http://www.thinkjessica.com/) and the police. Experience in primary prevention also covered contractual arrangements; two local authorities insisted that social care providers should prohibit the receipt of major gifts and legacies by staff (#8) and alert staff to the right ways of handing people's money, such as obtaining receipts (#2). One (#15) described financial issues as being of such great concern that they had run publicity campaigns, provided training on preventing financial abuse to professionals, and developed specific procedures for referrals from care homes.
In terms of secondary prevention, when there were anxieties about specific risks, professionals could increase reviews of care plans (#10) and strengthen audit trails (#4). When there was cause for concern or prevention of further abuse was necessary, tertiary prevention measures could include:
• Services from a local authority financial affairs team (not all had such a resource) (#7)
• Setting up a safeguarding plan
• Building up or reinforcing supportive networks
• Working with banks and other financial institutions.
Barriers and facilitators in safeguarding
Four main themes emerged when participants discussed barriers and facilitators to safeguarding; these included problems in working with banks, cultural barriers, other systemic failures, and facilitators.
Financial bodies
Bank procedures and rules reportedly presented significant barriers to safeguarding people from financial abuse. Most participants raised this problem and alluded to the impersonal nature of high street banks, banking staff's reluctance to question suspicious activity and defensiveness about information-sharing. Some ASCs were keen to enlist banks in preventing financial abuse:
“Banks don't really understand safeguarding at all and the need to report safeguarding issues. We try to involve them and very often they're reluctant – ‘a customer is a customer’. They need to understand some of their clients are vulnerable, to check on any unusual runs on their accounts. A person with dementia may say ‘everything is fine dear’ but it's about knowing your customers.” (#2)
Five participants felt that banks’ strict policies about information sharing made it difficult for investigations and enquiries to be instigated. One participant gave the following example:
“We suspected someone was being frogmarched down to the cash-point, virtually every day, to get money for alcohol for the rest of the family, but there was reluctance from the bank to engage. Banks don't see it upon themselves to investigate if they have someone who is possibly being defrauded of their money. I think there's more they could do. If they have an elderly person who seems confused withdrawing some money I don't think the bank would take it on themselves to say ‘can we go and have a little chat about it?’” (#10)
The relationship between banks and the police constituted further barriers. Evidence from a bank was reportedly rarely passed to the police and hence investigations did not proceed or were delayed. Another participant (#4) echoed this difficulty in information sharing and variability of response from staff in the DWP and local police:
“I think with banks it is a nightmare and the DWP hide behind a wall of Data Protection Act – a lack of awareness – I've been involved in a number of negotiations – it's abysmal – pensions – appointees not suitable – there's not a robust system in place. The partnership working with banks – and the police, [although] they are much better now, they are looking at scams – [but] I find at times the body on the ground, the police, there's a lot of ignorance there. It's very badly coordinated. The Economic Crime Unit has been doing work around scams – we've had a tragic case. At a strategic level the police are doing well – on the ground not so good.” (#4)
Another cited problems with the DWP refusing to block an unsuitable appointee from access to a vulnerable individual's account.
Cultural barriers
Some participants discussed what seemed to be cultural barriers around blurred definitions of abuse. They recognized dilemmas facing relatives when a kindly neighbor was providing a good, reliable service but seemed to overcharge for this. There was frequent confusion around family cultures where resources were shared. So when a carer went on holiday using her mother's money, because “that's what mum would have wanted,” one participant felt that there was room for speculation about intent to deprive (theft). A small number of participants felt that financial discussions were “taboo.” Some noted that this made it difficult for practitioners to ask the right questions:
“We don't want to intrude if they are working well but if you don't ask enough questions you don't know if they are working well.” (#3)
Other systemic failures
Some participants also perceived other systemic failures that resulted in safeguarding procedures not being carried out thoroughly. Early suspicions could not always be investigated owing to lack of time. Three ASCs criticized the time it took to conclude criminal investigations and suggested that this placed huge strain on family relationships such that it may deter reports of abuse. Some participants identified confusion about responsibility or duties to report abuse and felt that general practitioners did not do enough in this regard. There sometimes appeared to be some confusion within the police force about responsibilities for responding to financial abuse of vulnerable adults:
“I think one of the things that is still problematic is who in the police deals with financial abuse? Most of our contact on adult abuse is with the police protection Unit but most of the financial abuse is dealt with by CID [Criminal Investigation Department], so it's a bit messy.” (#8)
Facilitators
The police force was described as a potentially strong facilitator in safeguarding vulnerable adults; however, two participants felt that this was related to abuse of adults and not financial abuse per se. A good working relationship with the police was conceptualized as effective partnership and strong multi-agency working. Advocacy services enhanced safeguarding by enabling someone to have the time to talk to “victims.” The strongest example of facilitators came from three participants who talked of the expertise and skill of their local authority finance team in being equipped to investigate accounts, spot discrepancies, and deal more robustly with problems with appointees. Sustaining this resource in local government was deemed appropriate in light of the risks but could be uncertain in the current financial climate in the UK.
Discussion
This paper highlights the necessary dual focus on prevention and response when addressing the financial abuse of people with dementia through exploration of examples of safeguarding practice in England. The interviews revealed confidence in LPAs and associated legal frameworks suggesting that this may be a policy option for other countries. However, the LPA system stands in contrast to the system for managing the money of people with limited financial resources who may be vulnerable to abuse but who do not have potential alerters on their side such as banks, lawyers, and financial advisers. Appointeeships were seen as leaving scope for unscrupulous associates to take charge of the resources of vulnerable people with little oversight and highlight the need for the monitoring of proxies. While amounts being misappropriated may be small in size they might be the entire income of many people with dementia and give rise to suspicions that society is more concerned to protect the assets of the more affluent rather than poorer people with dementia or others who are unable to manage their money. Poorer people with dementia are also suggested to be more likely to refuse services overall (Payne and Gainey, Reference Payne and Gainey2009). This risk to people on low incomes stands in stark contrast with the scrutiny of LPAs and deputies who may be responsible for safeguarding the financial affairs of the more affluent. While an appointee must carry out their duties in accordance with the principles of the MCA and the system must respect the United Nations Convention on the Rights of Persons with Disabilities, 2006, this is still confusing to many professionals (Arksey et al., Reference Arksey, Corden, Glendinning and Hirst2008). Those with greatest experience of adult safeguarding, a sample of whom were interviewed in this study, are not confident that this area is effectively regulated. If this is so for a country as highly regulated as the UK then there are messages here for dementia care practitioners in other healthcare systems. They should not assume that older people with dementia are being honestly supported by members of their social networks.
One new feature of risks encountered by people with dementia was articulated by many participants and is not confined to the UK. Their vulnerability to scams and other electronic crime is increasingly recognized and, because this is not perpetrated generally by those in a position of trust or providing care, its presence or impact on a person's health and well-being may be overlooked. Further work on the identification of social vulnerability (Pinsker, Reference Pinsker2011) and strategies to prevent abuse would be timely because many public educational initiatives about e-crime may not be easy for people with dementia (and many others) to comprehend or recall. There is a difficult balance for family carers and for professionals to strike in safeguarding people from decisions that may reward criminal fraudsters but which also curtail their rights to make unwise decisions. The scope of protective legislation such as the MCA does not extend to this area when capacity loss is only partial. Financial reductions to local government services may diminish local resources to address such problems if they undermine corporate local authority financial expertise in managing money on behalf of vulnerable and isolated older people. This observation, and those relating to relationships with banks and police forces, confirms the need for prevention of and responses to financial abuse to be multifaceted.
Strengths and limitations
This study is limited in that the experiences of the participants might have been atypical and systematic reviews of activity were not accessed. To counter this, interviews were discursive in nature and sought specific examples of activity or analysis of communication and decision-making patterns. The views of other professionals might nonetheless provide alternative explanations of interagency relationships. The limitations of telephone interviews are recognized (Irvine et al., Reference Irvine, Drew and Sainsbury2010) but they facilitate research participation by busy professionals and may be particularly effective in retaining participants who have already been interviewed previously because there is a sense of a prior relationship especially if results have been fed back. The strengths of this study are that participants were experts in their field and were able to compare and contrast cases involving people with dementia with those of other people at risk.
Implications
The findings are potentially relevant to healthcare practitioners as they offer new information from those with expertise and experience about a subject that is of increasing concern. It is suggested that physicians consistently under-estimate prevalence of elder abuse overall (Cooper et al., Reference Cooper, Selwood, Blanchard, Walker, Blizard and Livingston2009). The advantages of planning in advance of loss of decision-making capacity were confirmed and this information may be useful to professionals who wish to alert people newly diagnosed with dementia of their options and of ways in which they can protect themselves from abuse to some degree. Practitioners’ roles could, therefore, encompass providing information about advance care and financial planning, what to do when financial capacity is declining as well as virtually absent, helping family members and the wider care team assess financial capacity, recommending specific support services and expertise to people with dementia and carers at appropriate times and referring them to the right sources of help (Widera et al., Reference Widera, Steenpass, Marson and Sudore2011). Triebel and colleagues have suggested that if financial competence begins to decline during the stage of mild cognitive impairment, when dementia has not been confirmed (Triebel et al., Reference Triebel2009), perhaps there is a need for advance care planning to be put in place in any event. Such arrangements may also clarify these areas of potential concern for relatives (Setterlund et al., Reference Setterlund, Telse, Wilson, McCawley and Rosenman2007).
While the MCA may be framed as helping with advance care planning (Manthorpe et al., Reference Manthorpe, Rapaport, Harris and Samsi2009), this paper has illuminated its important potential in safeguarding. The abilities of people with dementia and their carers to retain control of their assets and thus choices for as long as possible should be set against the risks of exploitation in its multiple forms. Although not explicitly stated by participants, standardized financial assessment frameworks, like that developed by Webber and colleagues in Australia, could help evaluate an individual's financial competence (Webber et al., Reference Webber, Reeve, Kershaw and Charlton2002). These tools for practice could be further investigated. However, we should be cautious of demanding better financial acumen among people with dementia than other people.
Healthcare professionals need to have confidence that bringing their suspicions to the attention of authorities is likely to be in the best interests of their patients. Further research would be helpful to investigate what facilitates cooperation between health and social care professionals and financial bodies since each may hold different views of confidentiality and public protection. It would also be useful for greater numbers of studies of abuse of people with dementia to include financial abuse. Such abuse is commonly experienced, may interact with other forms of neglect and mistreatment, and requires commitment of time and resources to investigate it.
Conclusion
There is increasing evidence that many older people are exposed to more than one form of abuse (Clancy et al., Reference Clancy, McDaid, O'Neill and O'Brien2011). Professional recognition of financial abuse may help to unravel the complexities of such circumstances and thereby increase the potential for responses to diminish these risks or to provide access to justice for older people with dementia. Researchers should be asked to include financial abuse in studies or to justify their exclusion more rigorously.
Conflict of interest
None.
Description of authors’ roles
J. Manthorpe was principal investigator of the study, designed the study, identified recruitment sources, conducted some of the data analysis, and wrote the paper. J. Rapaport recruited participants, conducted a majority of the interviews, and conducted part of the data analysis for this paper. K. Samsi liaised with recruitment sources, managed data collection, conducted part of the recruitment and interviews, and contributed to data analysis and writing of the paper.
Acknowledgments and Disclaimer
We are very grateful to all participants who agreed to be interviewed and shared their views with us. The study forms part of the EVIDEM programme of research (www.evidem.org.uk) (evidence-based interventions in dementia) commissioned by the National Institute for Health Research (NIHR) in the UK under its Programme Grants for Applied Research scheme (RP-PG-0606-1005). The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health.
