How Are People with Dementia involved in Care-Planning and ...



How Are People with Dementia involved in Care-Planning and Decision-Making? An Irish Social Work Perspective

Dr Sarah Donnelly, School of Social Policy, Social Work and Social Justice, University College Dublin Orchid ID: [pic]0000-0002-5436-3195

Dr Emer Begley, Former Policy and Research Manager with The Alzheimer Society of Ireland, Ireland

Dr Marita O’Brien, Health Policy Analyst and Independent Researcher

Key words: Dementia, Capacity, Decision-making, Social Work, Multidisciplinary team, Involvement

Author information

Sarah Donnelly PhD

Sarah Donnelly is an Assistant Professor in Social Work, School of Social Policy, Social Work and Social Justice at University College, Dublin and a CORU Registered Social Worker. Prior to working in UCD, Sarah was employed as a senior medical social worker and worked in a variety of clinical areas including neurology and age-related healthcare. Her research interests include, ageing, dementia, adult safeguarding, decision-making and practitioner-based research. Email: sarah.donnelly@ucd.ie

Emer Begley PhD

Emer Begley is Senior Project Manager with the National Dementia Office (NDO) in the Republic of Ireland. Prior to joining the NDO in January 2017, Emer spent eight years in the Community and Voluntary Sector working with a number of advocacy organisations focusing on dementia and ageing. Most recently she was Policy and Research Manager with the Alzheimer Society of Ireland. Email: begleye@tcd.ie

Marita O’Brien PhD

Marita O’Brien is a social researcher and founder of Co-Creation Support, a social enterprise aimed at supporting stakeholders, service users and providers, to actively shape the design and delivery of person-centred services and supports for older people and people with dementia through ‘bottom up’ engagement processes, research and knowledge translation. Until recently, Marita worked as a health policy analyst with Age Action, an older people’s advocacy group. marita.obrien@

Acknowledgements:

Mr John Brennan, Irish Association of Social Workers

Age Action Ireland

The Alzheimer Society of Ireland

Irish Association of Social Workers

Abstract

In recent years there have been national and international policy advances around capacity and decision-making and an apparent burgeoning rights-based approach to the issue, all of which have the potential to impact on the experience for people with dementia in Ireland. There is little evidence however on whether these policies and principles are being translated into practice and whether traditional paternalistic approaches to decision-making are being challenged. To gain insight into current practice, research was undertaken with social workers working with older people in Ireland; reporting on the involvement of people living with dementia in care-planning processes.

Data collection included a mixed method approach; an on-line survey of social workers from across the country who reported on their open caseload during the month of June 2015 (N=38 social workers reporting on the experiences of 788 older people). In addition, semi-structured telephone interviews were conducted with social workers working in the nine Community Health Organisation areas (N=21).

Findings show that people with dementia were high users of social work services, accounting for 44.5% of the client group. Social workers reported that there were no standardised approaches to how Health and Social Care Professionals (HSCPs) involved people with dementia in care planning and decision-making. Overall, people with dementia were more likely to be excluded from decision-making processes due to (i) assumptions that they lacked capacity, (ii) family members preferences that the person was not involved, (iii) communication difficulties, (iv) time constraints, (v) little or no opportunity given or (vi) the person delegated decision-making to others. Good practices were identified through multidisciplinary team approaches and formal care planning meetings.

This research highlights variability in how people with dementia participate in decision-making around their care. It sheds light on existing barriers which challenge the full implementation of the Irish Assisted Decision-Making legislation; highlighting the need for appropriate guidance and education for HSCPs. The findings also show that family dynamics and existing relationships can play a role in how people with dementia participate and are involved. To ensure consistent opportunities for participation, effective practices and approaches to supporting the participation of people living with dementia in care planning needs to be developed and rolled out in all care settings through increased training and adoption of standardised approaches.

Introduction

This paper reports on findings from an Irish study investigating how the health and social care system responds to the care needs, required supports and preferences of older people, including people with dementia. Findings reported in this paper pertain to the key aim to investigate older people’s involvement in decision-making relating to care planning, particularly focusing on those with a cognitive impairment and dementia.

The study gathered the experiences of social workers working in age-related care. Social workers play a key role at the interface between the older person, their families, hospital staff and community services (Gibbons & Plath, 2009). As such they are well placed to provide insight into the experiences of older people living with dementia in decision-making about their care and accessing health and social care services. The findings of this study shed light on current practice relating to the involvement of people with dementia in care planning and decision-making.

Policy context

Like other jurisdictions Ireland’s population is ageing, with the number of people aged 65 and older standing at 19.1% of the overall population (CSO, 2016). Alongside this, the number of people living with dementia is expected to increase exponentially. Rising from 55,000 people currently living with the condition, to 94,042 people by 2031 and 152,157 by 2046 (Pierce, Cahill and O’Shea, 2014) if current trends continue. While a person’s experience of dementia will be individual, and people will have varying interactions with health and social care services, as a group, people with dementia are high users of health and social care. For example, one in four acute hospital beds (Timmons et al, 2015) and 37% of all long-stay beds are occupied by someone with dementia (Health Service Executive, 2015).

In many European countries, including Ireland, a climate of austerity and cuts to health and social care budgets, in conjunction with population ageing, is creating particular challenges in the provision of services to maintain older people within their local communities (Lymbery, 2014) which is the preference of the majority (Barry, 2010). There is a heavy reliance on family members to provide the majority of community-based care, with an estimated 89.5% of both personal care and household tasks, provided by family carers (Care Alliance Ireland, 2015). Health and social care professionals (HSPCs) (Dijkman et al.2016) are therefore increasingly reliant on informal caregivers, mainly family members, to provide care and support, with 8,000 more unpaid carers providing care in 2016 compared to 2011 (CSO, 2016). The number of hours caring a day has also increased by 10% in the same time period (CSO, 2016).

In parallel to these demographic and health usage statistics, there is a changing legislative environment. A shift from a status approach to capacity to a functional one has been established as a starting principle based on the presumption that people have legal capacity to make decisions, unless shown otherwise. This change is embedded in the recently enacted Assisted Decision Making (Capacity) Act (ADM) (2015). Importantly, HSCPs will have an increased role to play in ensuring the involvement of people with dementia in decision-making and care planning.

Autonomy, Capacity and Decision-Making

Central to involvement in decision-making is the concept of autonomy; where autonomy is grounded in an understanding of the inherent dignity or worth of a human being to respect and self-determination. It is a core component of well-being and central to person-centred care. The right to self-determination is protected under a number of covenants and conventions which have evolved from the Universal Declaration of Human Rights 1948, the latest being the Convention on the Rights of Persons with Disability (CRPD). The ADM Act (2015) in Ireland is a significant step in enabling Ireland to ratify the CRPD. The Act replaces the ‘best interest’ model currently operating and introduces a model of will and preferences, where people’s values must be central to all decision-making and people’s choices and unwise decisions are to be respected. It introduces a decision-making assistance approach and outlines, for the first time in Ireland, a legal framework for the provision of Advanced Healthcare Directives.

Townsend (1998) believes that “the concept of autonomy directs us to recognize the potential agency in each of us to participate” (Townsend, 1998: 31). Autonomy is therefore nurtured when individuals’ thoughts, actions and interactions are valued. Whilst there is little disagreement in the literature that autonomy is central to older people’s well-being and an essential ethical principle of health care practice, upholding older people’s right to autonomy in care planning seems to rest on the conceptual understanding of autonomy and the individual’s physical and cognitive status.

Capacity and its relationship with autonomy especially for older people with dementia is a recurring theme in the literature; hence, capacity seems to take precedence as one of autonomy’s defining attributes (Boyle, 2008; Harnett & Greaney, 2008; Welford, Murphy, Wallace & Casey,2010). Autonomy understood as a ‘capacity’ based on individual competence, Kitwood (1997) argues, results in the assumption that people with dementia are not autonomous because of their inability to make particular decisions and exercise their choices, justifying surrogate decision-making by HSCPs and family members. Furthermore, older people’s autonomy, particularly where a person has dementia, is often threatened by professional paternalism, institutional self-interest (Hofland, 1994) and risk aversion in practice contexts (Baker, 2017).

Legislative changes have strengthened the formal right for people with dementia to participate in decision-making. According to the CRPD, ‘persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’ (Article 12). This raises important questions however about how decisions are currently made and experienced in practice (Larsson & Osterholm, 2014).

Despite a growing recognition of the importance of person-centred, inclusive and integrated approaches to care planning in Ireland, the experience of older people’s involvement in decision-making varies (DOHC, 2008). Older people’s participation in care planning meetings has been shown to be actively facilitated but at the same time ignored or denied by HSCPs. In addition, people with a cognitive impairment were found to be talked about rather than talked to with usage of the third person grammatical (Donnelly et al. 2013). Rather than involved, people with dementia are more frequently excluded from decisions about their future care (Larsson & Olsterholm, 2014). One of the major reasons for non-involvement is the lack of opportunity to be involved or that there were few or no choices made available to them (Smebye, Kirkevold & Engedal, 2012). In addition, it’s been found that the physical involvement of older people in care planning and decision-making does not necessarily guarantee genuine involvement (Hedberg, Cederborg & Johanson, 2007; Donnelly et al. 2013; Donnelly, Cahill & O’Neill, 2017). Organisational pressures such as discharge deadlines, limited resources and time pressures can make for hurried decision-making practices which can contribute to the older person feeling coerced into processes and plans that are not sensitive to their needs or wishes (Drystad, Laugaland & Storm, 2015). Older people are reported to have lower levels of influence over decisions in comparison with family members, which may result in them being left out of decision-making processes (Donnelly, 2012). Family members are routinely accepted as the key decision-makers (Larsson & Osterholm, 2014) who often fail to acknowledge the wishes of the person with dementia as expressed earlier in the illness trajectory (St-Amant et al. 2012). Furthermore, older people with dementia often face the double stigmatisation of ageing and disease (Scodellaro & Pin, 2011) which can impact on their involvement. Legislation has proven useful in ensuring that the will of the person with dementia is respected. For example, in the United Kingdom, the Mental Capacity Act 2005 enabled social works give effect to the will of the person with dementia, and their rights even though it did not match the will and expectations of the family caregiver (McDonald, 2010). It is envisaged, that once fully commenced, the Irish ADM Act (2015) will play a similar role.

There is also a growing discourse from people with dementia themselves that they want to be involved in all aspects of decision making about their care. For example, “People with dementia have the right to be provided with accessible information and necessary supports to enable them to exercise their right to participate in decisions and policies which affect them” (The Alzheimer Society of Ireland & Irish Dementia Working Group, 2016).

Supported Decision-Making

Arstein-Kerslake et al. (2017) outline the evolution of supported decision-making as a right for people with disability, ensuring people with cognitive disability are provided with the tools to direct their own life. Supported decision-making in relation to dementia, is about removing the barriers that prevent people with dementia from exercising their rights to make decisions by providing them with the support necessary to make decisions and communicate their choice. An evaluation by Westwood Spice (2015) of a supported decision-making pilot project noted the barriers to participation in decision-making were not intrinsic to the individual (i.e. the person’s disability) but due to a lack of supports available to the person. Barriers related to lack of power, information and familiarity with the decision-making process, low expectations by others, conflict of interest in relationships and “the length of time that it takes for someone to be supported to become ‘decision-ready’” (p.13). Key enablers included one-to-one support of the decision-maker by a trusted individual, time to work through the decision-making process, the education and training of people in the supporter role, assistance of a facilitator and “a shift in the ‘mindset’ of the broader service system” (Westwood Spice, 2017: 78). The core of supported decision-making is about taking the time to listen and communicate (Arstein-Kerslake et al, 2017). Its benefits include protection of individual autonomy and personhood, reduction in isolation, increased independence and better outcomes for the person (Stavert,2016). Under the Irish ADM legislation, a person is not to be regarded as being unable to make a decision “if he or she is able to understand an explanation of it given to him or her in a way that is appropriate to his or her circumstances” or because he or she “is able to retain the information relevant to a decision for a short period only”. For people with dementia this is critical, as they require information to be presented in an accessible way and time to process information and to express and communicate preferences.

Few studies to date have specifically explored how older people with dementia participate in decision-making (Smebye et al. 2012) and empirical evidence related to this topic appears limited. As we move towards a position where people with dementia are to be accorded their full right to not only make decisions but be provided with the necessary support, evidence is needed on how people with dementia are currently involved in decision-making processes.

Methods

The study involved two cross-sectional phases of data collection; a survey of social workers working with older persons across the Republic of Ireland (N=38) as well as in-depth telephone interviews (N=21) from a separate cohort of social workers. As the majority of survey respondents were based in the greater Dublin area and were medical social workers, we decided to also carry out in-depth telephone interviews in order to ensure greater geographical representation and also to attempt to gain insights from a greater variety of social workers in different settings. In both phases participants were employed in a variety of settings including Primary Community and Continuing Care (PCCC), Adult Safeguarding, Medical, Psychiatry of Later Life and Adult Mental Health services.

Phase One of data collection, the national survey, consisted of a self-administered on-line survey. Potential participants were contacted through the Irish Association of Social Worker’s (IASW) Special Interest Group on Ageing (SIGA) and other social work networks across the country. This approach was necessary as there is no one register of social workers working with older adults in Ireland and therefore respondents had to self-identify to take part in the research. The survey involved respondents reporting on their open cases concerning older people for the month of June 2015. In total 38 social workers fully completed the survey, reporting on the experiences of 788 older people in their caseload for the month in question. The majority of cases (62%) related to respondents who were working in acute hospital settings and in the greater Dublin area as shown in Table 1.

Area |Medical social work |Primary care |Mental health |Adult safeguarding |Later life psychiatry |Disability |Other |Total cases | |Dublin |433 |16 |49 |45 |1 |2 |37 |583 | |Other |54 |42 | |8 |90 | |11 |205 | |Total |487 |58 |49 |53 |91 |2 |48 |788 | |

Table 1: Number of cases by region and social work specialism

Of the 788 cases reported on, 39% of older people had a formal diagnosis of dementia. Interestingly when asked, social workers reported that they felt a higher proportion had dementia than just those with a formal diagnosis, estimated as 44.5% of the total sample.

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The 21 social workers who participated in Phase Two of data collection, the in-depth telephone interviews, were located across each of the nine Community Health Organisation (CHO) areas in Ireland, with at least two social workers from each area participating. This ensured a good geographical spread and national representation. Interviews lasted between 40-90 minutes. To ensure confidentiality and given the low number of social workers working with older people in some areas and the sensitivities of the issues being explored, all data was anonymised. Both the survey and interview questions broadly related to social worker’s experiences of accessing care and support for older people including community care and long-term care and explored barriers, challenges and waiting times. This paper will report solely on data relating to how older people with dementia were involved in decision-making relating to their care.

Data analysis

Quantitative survey data was analysed using SPSS statistical software to produce descriptive and bivariate results. The qualitative analysis set out to identify, describe and understand phenomena; interpreting the data in order to make sense of it. To ensure this an interpretive inductionist framework was applied (Kuczynski & Daly, 2002). Analysis of the qualitative data also followed an iterative data reduction process (Creswell, 2003; Crabtree & Miller, 1999; Kvale, 1997) – namely that information was extracted and data grouped for identifiable similarities and trends. Convergent themes were then noted and developed and supportive quotations were identified. While data was collected on social workers experiences working with all older people, the findings presented in this paper pertain specifically to data they gave on their experiences working with people with dementia.

Ethical approval was submitted to the Human Research Ethics Committee (Humanities) in University College Dublin and awarded ethical exemption as research participants were not deemed to be a ‘vulnerable’ population group.

Findings

The involvement of people with dementia in making decisions around their care is central to ensuring their care preferences are recognised. Survey respondents were asked how many of their clients were involved in decision-making related to their care planning. Of those clients who had a formal diagnosis of dementia, 55% were reported to be involved in decision-making. A key reason for non-involvement was due to a diagnosis of dementia, leading to the presumption that the person with dementia did not have the capacity to make decisions. Hence, they were not offered the opportunity to participate in the decision-making process by those involved (HSCPs and/or family members). In other cases, social workers recognised that even when persons with dementia were involved, their participation was deemed to be tokenistic. A formal meeting such as a care planning meeting was cited by many social workers as a key element of the decision-making process between the person with dementia, their families and HSCPs. However, there was no standardised practice for this and there were wide variations in how, and if, people were involved.

No standardised approach to involvement

From the qualitative data, there was evidence of differing approaches to involvement in decision-making across the sample group. The qualitative findings provide an in-depth insight into how capacity affected and influenced involvement in decision-making. Interview participants unanimously recognised the significance of capacity in this regard and the importance of promoting a person-centered approach.

A mental health social worker reported;

“If a person didn’t have capacity, I would try and involve them, or I would advocate on their behalf. There are time implications in involving them, but it is so important to do this. Different professionals have different practices, but overall, there are positive experiences and we would try and follow a person-centred model” (A16, Mental Health, Area G).

The extra time required to actively involve the person with dementia in decision-making was recognised by the social worker and the varying approaches of different professionals highlighted. At other times, a status approach was clearly taken, where the person’s score on a cognitive test, the Mini Mental Sate Assessment (MMSE) determined whether they were involved or not, regardless of their ability or desire to participate:

“For the person with dementia an assumption is made based on their MMSE score whether they can be involved or not…in principle they should be involved but in practice they are not” (A15, Medical Social Worker).

Social workers repeatedly talked about the disconnect between the principle of involvement and participation and the absence of this principle being implemented in practice situations. Furthermore, some social workers alluded to the possible tokenistic involvement of people with dementia and that decision-making can take place in a covert manner. A medical social worker reflected;

“For people with dementia it does tend to be tokenistic…decisions can’t be made against them, but plans are often made behind their backs and they’re not really actively involved. They are either ‘in’ or ‘out” (A9, Medical, Area B).

Reasons given for non-involvement

Social workers identified a number of reasons why people with dementia were not involved in decision-making about their care. Findings show that some were not given an opportunity, or their family vetoed their involvement, but in the majority of cases they were deemed not to have capacity to meaningfully take part. Figure one below, outlines the main reasons provided for non-involvement:

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Figure 1: Reasons why People with Dementia were not involved in decision-making

The complexities caused by dementia were identified as a barrier to participation by social workers who participated in the interviews. For example, the longer time it took to ascertain the person’s wishes. In many cases the current care system was not seen to be supporting autonomy:

“... the elephant in the room is around capacity ... the current approach is too simplistic and the current system is not fit for purpose ... there is no concept of functional capacity at the moment and everything is very medically led. When they don’t have capacity they’re not really involved and if they are, it tends to be tokenistic “(A19, Community, Area H).

It is clear that the issue of capacity and consent are critical to whether and how people with dementia are involved in decision-making processes. The employment of a status approach to capacity appears to have directly contributed to people with dementia being routinely excluded from decision-making or at best a level of involvement which was deemed to be tokenistic.

Impact of Family Members

Interestingly, experiences for people with dementia were similar and reflected those of older people more generally. Social workers reported paternalistic practices for many older people where family members were assumed, and treated as the key decision-makers rather than the older person themselves;

“Quite often the older person isn’t involved and often the families make the decision for the older person…this would happen in 90% of my cases. The situation is the same for both those with and without dementia” (A21, Community Social Worker).

The interdependency between people with dementia and their family/caregivers was highlighted. HSCPs’ dependency on family carers to facilitate discharge arrangements and provide care was often the reason why the older person was completely excluded from decision-making. The dominant influence of doctors and treating consultants was also reported as well as organisational ageism for example, in the hospital setting:

“The social worker talks with the older person about plans, etc. before any discussion with family members. However, doctors don’t always follow suit. Rather, they often go directly to the family and by-pass the patient. Ageism is rife in the hospital” (A9, Medical, Area B).

Other social workers however had more positive experiences and received support from the doctors involved; “… I would also always seek consent to speak to family members even for those people without capacity and the doctors are generally very supportive” (A18, Mental Health, Area G).

Social Workers acknowledged the difficulties they often experienced in balancing the older person’s involvement and needs and preferences with that of their family members. They stated that often family members assumed that because their relative had a diagnosis of dementia, this meant they were no longer capable of making decisions related to their care planning and health. In these instances, social workers drew on existing health care policy and legislation to ensure the person with dementia’s wishes and preferences were adhered to where possible. A mental health social worker gave the following example;

“Often there can be disagreements between the patient and a family member...If there is family anxiety relating to an older person remaining at home, I would try and explain things from a human rights perspective and also use the legislation to highlight that an older person can’t be detained or sent to a nursing home against their will” (A12, Mental Health, Area D).

Balancing Risk and Autonomy

In many cases the presumed level of risk was key to decision making and family members and the multidisciplinary team (MDT) were deemed to be risk adverse. Risk was repeatedly cited by social workers as a strong influencing factor on MDT and family decision-making. Participants noted how families as well as professionals can be “very cautious and risk averse” (A6, Mental Health, Area E).

Social workers reflected on their own attitudes towards risk and for many they appeared comfortable with dealing with risk as long as the person with dementia had been provided with all available information relating to care options or a particular decision;

“Open and honest discussion with older person re: perceived risks/ concerns and supports available to try and ensure independent living for as long as possible” (A3, Community, Area C).

Other social workers however reported that in some situations, concerns about risk resulted in premature consideration of nursing home placement:

“Panic sets in ... concerns around risk. This directs families to look more towards long term care (nursing home care), even for those older people with only a mild dementia” (A15, Medical, Area J.)

Many social workers acknowledged the existence of risk but attempted to balance family member concerns by fostering and respecting the wishes of the person with dementia;

“…Once we are clear about the risks, that’s the main thing. [If they say] “I would rather take the risk and die at home”, we would try and respect their autonomy. There would be a lot of concern that [the] person might fall and die, but at least they will die having lived their life in the way they wanted to” (A3, Community, Area C).

Social Workers as Advocates

Advocacy was viewed as critical for people living with dementia, particularly when it comes to decision-making. One social worker commented on the challenges of acting as an advocate;

“In relation to people with dementia, it’s much harder to advocate for them as their families are usually more vocal. We would still try to elicit their views and present them to the rest of the team...” (A20, Community, Area F).

Others however commented on the significant role which social workers have as an advocate in their work with people with dementia;

“If I thought the person with dementia wasn’t being involved, my role as social worker would be to take on that advocacy piece and to put my foot down. I have also accessed the services of an independent advocate in a previous case” (A20, Community, Area F).

It is clear that social workers recognised and responded to the strong need for advocacy and support which people with dementia require in relation to their views and wishes being ascertained and upheld.

Structures which supported active involvement

As mentioned earlier, social workers identified time was one of the most critical factors viewed as fundamental in supporting the active involvement of people with dementia in care planning and decision-making processes. Social workers explained this meant not only time to discuss and explain what care planning and support options were available but additional time that is required in family meetings/care planning meetings to fully discuss discharge planning options;

“…more time for older person to consider options, - often family meetings are rushed to facilitate timely discharge if medically fit” (A15, Medical, Area J).

Where dementia specific-staff were available to provide support, positive outcomes were reported; ‘We have a dementia adviser in our area who is very good. Her role is so important as she is seen as someone outside the Primary Care Team’ (A3, Community Social Worker).

Flexibility and creativity were evident with some mental health social workers reporting that care planning meetings would be held in the home of the person with dementia in order to optimise their participation and involvement. Other social workers commented on the challenges of involvement in practice and questioned the focus on active participation for people with dementia in some cases. For example, one social worker queried, “Is it really in their best interests if they are becoming very agitated?” (A15, Medical, Area J), while another reported that some people with dementia “walk away” (A2, Community, Area C), and didn’t appear to want to be part of the discussions.

Suggested Changes to Improve Participation

Social workers were asked what they felt might help improve participation levels and they provided a number of suggestions as to how they believed the participation of people with dementia in care planning and decision-making could be improved.

Adoption of a Systems Approach

Firstly, the importance of adopting a broad systems approach was recognised and the importance of “…a good knowledge of family dynamics” (A6, Community, Area B). In addition, a strong therapeutic relationship with the person with dementia was seen as critical. The embedding of a multidisciplinary team approach in conjunction with the person with dementia and their family caregivers was also proposed as helpful. For example, some social workers recommended the routine use of Family/Care Planning Meetings to formalise care planning and decision-making; “Care planning meetings led by the Medical Social Worker with full participation of the MDT and patient led service adopted by the treating consultant” (Survey Respondent 13). It was also acknowledged that if the person with dementia didn’t wish to attend their care planning meeting, that all available care options and any decisions considered or reached should be fully discussed with them afterwards.

Furthermore, it was suggested that the acute hospital setting may not be the most conducive environment for people with dementia to make decisions, “…decisions should not be made when the person is at their lowest ebb in an acute hospital and feeling unwell” (Survey Respondent 15). Another social worker stressed the importance of a relaxed environment, and that cognisance should be given to the number of people in attendance at the care planning meeting as well as the need for pre-meeting preparation; “… meet before the (care planning) meeting to brief them on what will occur and also get their views so that the social worker can advocate for them” (Survey Respondent 21).

Education and Training

The second theme related to the need for increased education and training of HSCPs. This was identified as fundamental to ensuring older people with dementia were supported to make decisions through standardised practices; “Better education on cognitive impairment and what capacity actually means” (Survey Respondent 9). Social workers believed that a lack of knowledge by HSCPs, in conjunction with the absence of clear policies and procedures, were directly contributing to people with dementia being excluded. A medical social worker suggested;

“Train all members of MDT regarding the right for older people to be involved in decision-making - perhaps develop a specific policy/procedure that must be adhered to within the hospital. Be clear with families that patients have a right to be involved in all aspects of the decision-making process” (A16, Medical, Area G).

In addition, it was also recognised that MDT members would benefit from dementia specific communication training to enhance and improve current practices.

Cultural Change at Macro Level

The final theme to emerge was more macro in nature and related to attitudes and organisational cultures. Social workers suggested that the adoption of a rights-based approach when working with people with dementia required a cultural change and a shift in attitudes both at an organisational and societal level. Social workers believed that people with dementia were not being routinely involved in decision-making processes often due to prevailing ageist attitudes;

“By changing the culture - shifting ageist attitudes by actually including older people, actively engaging them, empowering them, not treating them as separate or talking over them and not automatically handing over the decision-making to their families” (Survey Respondent 6).

Better guidance through supportive policies and full implementation of legislative changes was again deemed critical;

“I think the awaited Assisted Decision-Making (Capacity) [Act] will be helpful in this regard. Also, agency policies that promote inclusion” (Survey Respondent 8).

Finally, the importance of legal implementation of advance care directives was also highlighted, “…Need a system where an individual's prior wishes is given legal standing when they are no longer able to make decision, i.e. putting advanced care directives on a legal footing” (A20, Community, Area F).

Discussion

In this paper, the involvement of older people with dementia has been examined through the lens of social workers involved in their care. A broad spectrum of experiences have been captured through the voices of social workers, including those working in medical, primary care, mental health and psychiatry of later life settings.

Despite national and international policy advances and an apparent burgeoning rights-based approach to decision-making, in theory this was not evident in practice and paternalistic approaches appeared to be the norm. Findings show that there were inconsistencies in how older people with dementia were involved in decision-making about their care and stark variations were described suggesting little standardisation in practice. Social workers reported that many older persons with dementia were excluded from the decision-making process regardless of their level of cognitive impairment. Similar to previous studies, these findings suggest that people with dementia were excluded rather than being actively involved (Smeybe et al. 2012; Donnelly et al.2013; Larsson & Osterholm, 2014).

Results indicate that an overly simplistic approach to capacity has created a situation in clinical practice where it appears people with dementia were often routinely excluded because of their capacity status. Our study provides little evidence that a functional approach to capacity is being employed as outlined in the Irish Health Service Executive Consent Policy (HSE,2013) and suggest that a concerted effort is needed to ensure that the principles of the ADM legislation inform practice in a meaningful way.

The organisational context added to the complexity of decision-making processes in many situations. The attitudes of HSCPs, treating Consultants/GPs and families played a crucial influencing role in determining whether or not people with dementia were involved. Decisions were taken in the ‘best interest’ of the person, with social workers reporting that HSCPs and family members were risk averse even for those older people with a mild dementia suggesting that their expressed wishes and preferences for care and support were not ascertained or acted on in many instances. Findings reveal significant differences in practices by social workers and HSCPs in how, and if, people with dementia were involved. In many instances, the biomedical model was evident, and the opinion of the treating Consultant/GP was deemed to have a powerful influence on whether the older person with dementia was involved or not. The issue of capacity, or lack of, appeared to be one of the key influencing factors contributing to their automatic exclusion in many cases. Hierarchies of power appeared to exist within MDTs with social workers often having to assume a strong advocacy role.

A key finding was that family caregivers and HSCPs dominated decision-making, especially within formal decision-making processes such as care planning meetings. Furthermore, even when older people with dementia were involved in care planning meetings, their participation was often deemed to be tokenistic, with family members presented/treated as the key decision-maker, as in Larsson & Olsterholm’s (2014) study. This may be due to the reliance of HSCPs on family members to facilitate discharge or to provide care and support to the older person with dementia; a reflection of the health and social care system’s reliance on family carers. A theory supported by the increase in family members providing both personal and domiciliary care in Ireland and year-on-year cuts to community care services during a prolonged period of austerity. Hence HSCPs can more actively seek the opinions of the family rather than those of the person with dementia (Tyrell, Genin & Myslinski, 2006) or empathize with family members and form alliances against the person with dementia or exclude them (Gilliard, Means, Beattie & Daker-Whitem, 2005). This is of concern, as at times families can confuse what is in the older person’s best interests with their own interests (Hirschman, Joyce, James, Xie & Karlawish, 2005).

Another possibility is that the person’s wishes are overridden by those of the family in spite of support from social workers and HSCPs. The person with dementia’s preferences to remain at home for example, is often only possible with the participation and support of family carers. It may be the case therefore, that MDTs may place excessive demands on family caregivers resulting in the older person feeling like a burden (Bangsbo et al. 2014). HSCPs appear to be experiencing ethical dilemmas whereby they found it extremely difficult to uphold the autonomy and rights of the person with dementia while also being cognisant of the needs of family members and discharge planning pressures (Smebye et al. 2016).

In addition, there was evidence of underlying ageist attitudes where neither the MDT nor family members viewed the older person as capable of making ‘wise’ decisions. Family members appeared to lack information and knowledge as to the rights of their relative with dementia to make decisions. This often taken-for-granted assumption that these decisions are normally made without participation of the person with dementia, and without taking her/his opinions and remaining abilities into account (Larsson & Olsterholm,2014) must be urgently addressed

Lack of knowledge as to how to balance agendas or share power within decision-making processes may have also been a contributory factor. It should also be considered that perhaps doctors, HSCPs and social workers did not believe that they had sufficient time required to ascertain the wishes of the older person or to develop a therapeutic relationship which would create an emotionally secure environment enabling the person to feel comfortable communicating their preferences. This study suggests a lack of confidence and skills by HSCPs to communicate and involve the person with dementia, combined with prevailing risk averse attitudes and inherent ageism within wider society, resulting in paternalistic behaviour on the part of family members and the clinical practice of HSCPs. This approach denies people with dementia their right to make informed decisions on matters that relate to them.

At the same time, good practices were identified specifically through strong MDT approaches and the participation of the older person with dementia in a minority of care planning meetings. It is interesting that in some cases, Irish social workers employed similar creative strategies to the social workers in McDonald’s (2011) study where social workers respected the will of the person with dementia even if this conflicted with that of family member and drew on relevant legislation and policy to support this process. Pseudo-autonomous decision-making was often explicit and seemingly rooted in family members or HSCPs falsely assuming that they knew the wishes of persons with dementia and acting accordingly. As cognitive abilities decline, understanding relationships and clarifying values seem to take on added importance (Larsson & Olsterholm, 2014) and this was reflected in social workers recognition of the need to adopt a systems approach to their clinical practice.

Conclusion

The discussion highlights the many barriers that must be addressed at a cultural, organisational and professional level if people with dementia are to be supported to exercise their right to make decisions about their lives. These barriers hamper the full implementation of national and international policy and legislative directives which promote supported decision-making.

The study found that the main barriers preventing the involvement of people with dementia in decision-making included:

• lack of standardised practices to involving people with dementia in decision-making;

• lack of awareness amongst HSCPs of their obligation to facilitate and provide practical support to a person with dementia to make decisions and where the person’s capacity is in question, to provide practical support to facilitate the person to make decisions;

• families and HSCPs accepting a person’s right to make unwise decisions;

• reliance on families to provide the care and support the person with dementia needs to execute decisions based on their will and preferences;

• prioritising of institutional objectives for example, hospital discharge

It is envisaged that the full commencement of the ADM legislation will help inform a fuller implementation of a functional approach to capacity in the Irish context. Supported decision-making will only become a reality for people with dementia if effective systems are put in place however, to implement the ADM 2015. These systems require resources for the education and training of HSCPs, at undergraduate and post-graduate level (Hudson, Quinn, O'Hanlon & Aranda, 2009; Donnelly et al. 2013; Reed & Harding, 2015); human rights awareness raising amongst family members and the person with dementia; adequate funding and a statutory right to community care and the monitoring of acute hospital discharge processes to ensure that people with dementia’s right to decide is not superseded by institutional priorities. The full implementation and roll-out of the InterRAI Single-Assessment Tool, which will include a carer needs assessment in Ireland may also help ensure that greater cognisance is given to the needs of carers of people with dementia in a formalised manner. This will mean that social workers will have concrete evidence to advocate for increased formal care and support not only for the person with dementia, but also for their family caregivers.

Ultimately, we must remember that it’s not simply enough to include people with dementia in decision-making, it must also be conveyed to them that their participation matters (Bartlett & O’Connor, 2010).

Limitations of Study

A limitation of the study is that findings relate to the Irish context where there may be cultural nuances and family norms which are different to other jurisdictions. In addition, findings are reported solely from the perspective of social workers. Other HSCPs, older people and family carers may have different experiences and opinions on how older people with dementia are involved in decision-making. The study also only explored the experiences of people with dementia aged over 65, as the Irish system of care provision separates age-related care and general disability and mental health services. It would be important to also explore the experiences of younger people with dementia in decision-making processes. Finally, the numbers of older people reported to have a suspected dementia rather than a confirmed diagnosis were determined by the social workers professional judgement and therefore must be treated with some caution.

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