Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland

Abstract

Introduction

Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges.

Method

Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings.

Findings

Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers’ combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes.

Conclusion

Participants ranked day care and non–means-tested carer’s allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers’ contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability.

Keywords

family carers dementia psychosocial support priorities nominal group technique

Introduction

Worldwide, the number of people with dementia is estimated to be 50 million. There are 10 million new cases every year and this figure is set to triple by 2030 (World Health Organisation, 2019). Currently, the majority of community-based care for people with dementia is provided informally by family carers and friends (Colombo et al., 2011; World Health Organisation, 2012, 2017). This cohort of family members caring for dependent relatives has been referred to as the ‘hidden health system’ (Levin & Idler, 1981), and European formal health systems rely heavily on their support (Spasova et al., 2018). It is estimated that the number of family carers is double the size of the formal long-term care workforce in Europe (Birtha & Holm, 2017), with family carers providing over three quarters of the total long-term care to dependent older people with and without dementia. Given the ageing demographic, demand and costs of long-term care systems across Europe will increase dramatically (Glendinning, 2018), so too will expectations on family carers to supplement, and in some cases substitute, for government provision of care.

In Ireland, where this study was conducted, the 2016 Census of Population reported that 195,263 family carers provided 6,608,515 hours of care each week, averaging 38.7 hours per family carer (CSO, 2017). The majority of family carers are women (60.5%) and just over half of family carers were aged 40–59 years old. In a separate research study, it has been projected that 60,000 family carers provide care for community-based people with dementia in Ireland (Gillespie et al., 2013). Both family carers and healthcare professionals in Ireland have identified funding constraints, limited service delivery and inequitable access as issues within the community care sector in Ireland (Donnelly et al., 2017). The total annual cost of dementia care in Ireland is estimated to be €1.9 billion, with 48% of this cost provided informally by family, only 9% being spent on community-based formal health and social care supports and 43% being invested in residential care (Connolly et al., 2014). Over time, public policy discourse in Europe, including Ireland, has evolved to an ageing-in-place narrative that emphasises community care rather than residential care (O’Shea et al., 2019). While this shift has been generally welcomed by older people, evidence in other countries suggests that ageing-in-place policies have resulted in a redistribution of care work from paid institutional carers to unpaid family carers in the community (Horner & Boldy, 2008; Pickard, 2015; Vreugdenhil, 2014).

Therefore, while family carers continue to be the bedrock of support for people with dementia in many countries, this commitment often comes with significant negative impacts on their health and well-being (Liu et al., 2018; O’Dwyer et al., 2016). As dementia progresses, family carers may have to adapt to increased morbidities and higher levels of disability. This increased dependency means family carers have to spend more hours caring and assisting with a wider range of care tasks (Betts-Adams, 2006; Gaugler et al., 2007; Lethin et al., 2016). In some cases, family carers must also adjust to behavioural symptoms experienced by people with dementia, aspects of caring that can be distressing (Brennan et al., 2017). The availability of tailored, dementia-specific services is low across Europe for both people with dementia and family carers. Even when dementia-specific supports are available, service uptake is often poor (Bökberg et al., 2015). These factors create additional stress on top of the pre-existing emotional concerns that family members have for the person with dementia (Bobinac et al., 2010). In Ireland, the prevalence of clinical depressive symptoms among family carers of people with dementia is three times the Irish national average (Brennan et al., 2017; OECD/EU, 2018).

Alongside personal factors, public attitudes towards dementia have also been shown to influence carers’ health and well-being. Family carers and people with dementia have reported changes in their social lives as a consequence of negative social attitudes towards dementia. The stigma of dementia is still prevalent in Ireland (Glynn et al., 2017), and a type of social distancing or socially isolating behaviour from friends and family often occurs. This has been attributed to a lack of understanding and lack of knowledge on how to communicate with people with dementia (Vikström et al., 2008). Conflict within families also further weakens pre-existing social support systems, particularly in cases where adult children withdraw from the care of a parent (Davies et al., 2019). Increasing caring responsibilities and time commitments can lead to family carers experiencing a ‘shrinking world’, in which maintaining access to social and physical realms beyond the home becomes difficult (Davies et al., 2019; Ward et al., 2018). Decreased financial and economic well-being is another common consequence associated with caring for a person with dementia (Oliveira et al., 2020). Out-of-pocket care-related expenses account for 11% of annual household income for families of dependent people without dementia in the last five years of their life. This cost is even higher for families of people with dementia, with 32% of annual household income going towards out-of-pocket care-related expenses (Kelley et al., 2015). Furthermore, family carers often experience significant loss of income if they are unable to balance employment and caring responsibilities (Neubert et al., 2019; Principi et al., 2014). Given restricted pensions and decreased opportunities to accumulate wealth, family carers’ finances do not tend to recover in their post-caring life (Craft et al., 2018; Nepal et al., 2011).

In response to the above evidence, a wave of research has emerged on the needs and outcomes of family carers of people with dementia. Researchers have identified family carers’ unmet needs (Kerpershoek et al., 2018), developed innovative interventions (Livingston et al., 2013), investigated how service delivery impacts carer well-being (Al-Janabi et al., 2019) and advocated increased focus on positive aspects of caring (Quinn & Toms, 2018). However, for all of the literature on the potential needs of carers, there has been much less focus on eliciting direct carer preferences on optimal responses to meeting their personal needs and, in particular, what services and supports should be prioritised by governments. There has been even less emphasis on wider social supports, including those that impact on family carers’ financial and economic well-being. For policy change to occur, knowing what supports and services are perceived as most valuable by family carers is important, at personal and wider social levels. Given that most long-term care systems for people with dementia rely heavily on family carers, their preferences for supports and services need representation in both research and policy.

This objective of this article is to identify personal and social challenges experienced by family carers of people with dementia and to ascertain their individual and collective preferences for, and prioritisation of, a broader menu of supports and services from government. Typically, when exploring this issue, researchers tend to favour either an individual or social perspective – rarely is there a comprehensive approach that encapsulates both individual and social viewpoints (Bell, 2017). Reframing non-pharmacological interventions for people with dementia as ecopsychosocial interventions to include individual, community and social environments has recently been proposed using ecological systems theories (Zeisel et al., 2016). An ecological systems approach acknowledges that each person exists within a variety of interacting individual, community and broader social systems (Bronfenbrenner, 1979). The current article incorporates both individual and social perspectives in the operationalisation of ‘psychosocial’, as per ecological systems theories, and also allows economic aspects to be considered under the social heading, given the influence of purchasing power on individual decision-making in multiple social areas. This approach facilitates consideration of the broad range of problems and constraints experienced by family carers and provides the framework for a comprehensive enquiry and analysis of what carers value most in addressing the various challenges they face in caring for people with dementia.

Methods

Study design

Nominal group technique (NGT) is a structured approach to focus groups that encourages contributions from each participant and group discussion around individual responses and contributions. A combination of discussion, idea generation, clarification and ranking are used within NGT methodologies. This approach has previously been used to identify service preferences of family carers of people with systemic sclerosis (Rice et al., 2018). NGT methodologies have not previously been used to identify the service needs of family carers of people with dementia but have been used to identify palliative care preferences for people with dementia, including family carers’ perspectives (Dening et al., 2012; Mulqueen & Coffey, 2017).

A modified NGT methodology was employed to explore family carers’ preferences and prioritisation for psychosocial supports and services. This novel approach involved the separation of the NGT into two structured stages: personal challenges, supports and services; and social challenges, supports and services. We have included economic, legal and cultural dimensions under the social heading. Given the more frequent and immediate nature of personal challenges, the research team acknowledged that family carers may be inclined to discuss personal caring issues more than social concerns. Designating equal time to separately consider personal and wider social challenges encouraged family carers to give the same attention to both areas.

A mix of family carers, each with different backgrounds, participated in the research. It has been well documented that family carers at different stages of caring experience different challenges (Sutcliffe et al., 2015), as do spousal and adult child carers (Conde-Sala et al., 2010; Ott et al., 2007). Previous research has also highlighted that former family carers experience a unique set of challenges in their post-caring lives (Corey & McCurry, 2017). To address any potentially negative effects of caring following the death of the person with dementia, post-caring consequences should be considered in the development of supports and services. For this reason, family carers of people with dementia in long-term care or of those who have passed away are represented in this study. During NGT groups, each participant has the opportunity to voice their opinions. The entire group then has the opportunity to ask for clarification on challenges experienced by family carers with a different background to themselves.

NGT methodologies are not individual needs assessments that focus specifically on the particular service needs of a family carer. Given the likely diversity of opinion, experiences and background that any group of people may have when considering any topic, formalised consensus methods facilitate a more objective consideration of priorities within health and social care provision. Participants were instructed to look beyond themselves and when ranking services and supports and also consider family carers of people with dementia more generally. Family carers were also asked to rank supports and services based on the assumption that they would be delivered efficiently and equitably, at the right time and in the right location. Consequently, rankings were based on an optimal delivery of services and supports, rather than on participants’ direct experiences, positive or negative, of these services and supports.

Sample

In total, 17 family carers of people with dementia participated in these NGT groups. The mean age of family carers was 65.9 years; just over one-third were aged 65 years or under. Almost three quarters of carers were women. Close to two-thirds were spousal carers and about one-third adult child carers. Most carers were looking after a person with dementia in the community (82.4%). Over half of carers were providing 80+ hours of informal care per week. The mean age of people they cared for was 79.8 years and most of these people had a moderate to advanced dementia. Just over 40% of carers were looking after someone that they categorised as being in late-stage dementia. Descriptive statistics for the study participants are outlined below in Table 1.

Table 1.

Descriptive statistics.

Family carer profile
Age	Under 65 years	35.3%
	65–70 years	29.4%
	76–80 years	29.4%
	80+ years	5.9%
Gender	Female	70.6%
Gender	Male	29.4%
Marital status	Single	23.5%
	Married/civil partnership	70.6%
	Widowed	5.8%
Education	Secondary	11.8%
	Vocational/technical qualifications	23.5%
	Third-level non-degree	29.4%
	Third-level degree or higher	17.6%
Employed	Yes	35.3%
Employed	No	64.7%
Relationship to person with dementia	Spouse	58.8%
	Child	35.3%
	Relative	5.8%
Care hours per week^a	0–16 h	5.8%
	17–34 h	17.6%
	35–49 h	5.8%
	50–79 h	11.8%
	80+ h	58.8%
Duration of caring	Less than 1 year	5.9%
	Between 1 and 3 years	41.2%
	Between 3 and 5 years	23.5%
	Between 5 and 8 years	11.8%
	More than 8 years	17.6%
Co-residence^a	No	35.3%
Co-residence^a	Yes	64.7%

Person with dementia profile
Age	Under 65 years	5.8%
	70–75 years	17.6%
	76–80 years	23.5%
	81–85 years	23.5%
	86–90 years	29.4%
Gender	Female	47.1%
Gender	Male	52.9%
Residence^a	Community	82.4%
Residence^a	Long-term care setting	17.6%
Family carers assessment of dementia stage	Early-stage dementia	11.8%
	Middle-stage dementia	35.3%
	Late-stage dementia	41.2%
	Passed away^a	11.8%

^aIn cases where the person being cared for had passed away, family carers were instructed to provide details based on last month of life. These people with dementia passed away in 2016 and 2017.

Setting

NGT focus groups were conducted in three separate locations in Ireland between August and November 2019: Dublin (N = 4), Galway (N = 7) and Kerry (N = 6). Family carers who participated were current family carers of people with dementia living in the community or in long-stay residential care or former carers. The use of gatekeepers facilitated the research team to access participants in each location. Ethical approval for the study was provided by the NUI Galway ethics committee.

In all three sites, gatekeepers provided study information sheets to potential participants who agreed to be contacted by the research team. In one site, the gatekeeper recommended that the researcher contact potential participants by telephone to explain the research and answer questions. In the other two sites, upon recommendation of the gatekeeper and request of family carers, the lead researcher facilitated an informal meeting with potential participants to clarify the study’s aims and objectives and deal with any queries. In two sites (Galway and Kerry), family carers were recruited from pre-existing carer support groups and were known to one another prior to the NGT group meeting. Family carers in the Dublin site were not familiar with one another prior to the NGT group meeting.

Group size was determined based on general NGT recommendations of 5–7 participants per group (McMillan et al., 2014, 2016). The research team originally recruited seven family carers per site. However, four family carers did not participate on the day; three people dropped out in Dublin and one in Kerry. Reasons for non-attendance included last-minute absence of replacement care, problems with day care attendance for the person with dementia and unexpected unavailability of transport to the venue.

Materials

The researchers developed consent forms, information sheets, an NGT schedule and an NGT workbook. These materials were initially reviewed by two family carer Public and Patient Involvement (PPI) contributors. The procedure and integration of PPI feedback had been documented in Supplementary Appendix A.

A major material component of the research design was the list of services and supports and accompanying descriptions (see Tables 3 and 5). The generation of the initial list of services and supports, including accompanying description, was guided by the national (Family Carers Ireland, 2018; National Dementia Office et al., 2016) and international literature (European Social Policy Network, 2018). This initial list was reviewed by PPI contributors and dementia-specific service providers to assess the comprehensiveness of the list and the clarity of the various descriptions. The materials and the NGT procedure were piloted to identify any methodological issues. During the pilot NGT groups, service/support descriptions were read aloud to family carers and time was allocated for family carers to ask for clarification on the various definitions. This was also done in the main study.

The process also allowed for the inclusion of additional service/support recommendations from NGT participants during the meeting. For any new supports and services recommended by NGT participants, the group facilitators documented discussions on the rationale for their inclusion in some detail. A summary was then presented to the NGT participants to ensure accurate interpretation of the discussion surrounding their inclusion (see Tables 3 and 5).

Procedure

Each NGT group meeting was audio recorded with participant consent. To ensure consistency, each NGT group followed a predetermined structured schedule. This schedule consisted of six steps repeated for both NGT stages – personal and social (See Table 2). Each NGT focus group lasted approximately three hours; an hour and 25 minutes was dedicated to each stage with a 10-minute break in between.

Table 2.

Nominal group technique steps.

Step 1: General discussion	The participants were asked to silently reflect on the challenges associated with being a family carer. Following this silent reflection, family carers wrote down their challenges in a workbook. The participants took turns highlighting these challenges aloud to other members of the group. These challenges were recorded on a flipchart for group discussion. This stage allowed for the group to become aware of the different challenges experienced by different family carers. Throughout the process, participants were encouraged to think about their own specific needs and the potential needs of other carers
Step 2: Idea generation	Family carers were presented with a list of descriptions of services that are currently available nationally and internationally. The facilitator read out this list of services and gave the participants the opportunity to ask questions on each of the items listed. The facilitator then asked participants to write down ideas and suggestions for additional services or supports that were not included on the initial list
Step 3: Round robin	During this step, the facilitator asked each family carer to state one additional support or service to the group in a ‘round-robin’ fashion. In this context, round robin means that each participant takes turns to speak. This stage continued until saturation of ideas was reached, that is no additional new services and supports were forthcoming. These ideas were recorded by the facilitator on a flipchart
Step 4: Clarification	The fourth stage is clarification of the new ideas for additional services and supports, including agreeing definitions and eliminating any duplication. All items were discussed to ensure participants understood the rationale for inclusion. At the end of this stage, the participants had a list of items consisting of both new and previously outlined supports and services
Step 5: Individual ranking	Family carers were provided with a ranking sheet. As per NGT guidelines, family carers were asked to rank their preferences for each item on a scale where 1 represented most helpful, 2 represented second most helpful, 3 represented third most helpful, etc. While accepting that this ranking would reflect their own experiences, participants were asked to think about overall carer needs during the ranking process
Step 6: Consensus on group ranking	The participants’ individual rankings were then recorded on a flipchart and the overall group ranking was calculated based on aggregation of individual preferences. Participants discussed if the overall group ranking accurately represented the group’s preferences. If participants felt that an item’s ranking did not accurately represent group views, there was an option to adjust the ranking to reflect the emerging consensus

NGT: nominal group technique.

In the event that it was not possible to reach consensus, the researchers planned on recording and reporting conflicting opinions in this article. However, in all cases, family carer participants felt that the overall group ranking that was based on the quantitative aggregation of individual preferences accurately reflected group qualitative preferences. Therefore, it was not necessary to re-rank (see Step 6) or account for conflicting opinions.

Data analysis

Quantitative ranking occurred in three steps: individual ranking in each site, group site ranking derived from the individual responses and final aggregate ranking across the three sites. Individual ranking involved family carers ranking each service/support on the basis of its helpfulness to carers (participants ranked the most helpful service as 1, the second most helpful service as 2, etc.).

Once family carers assigned their own individual rankings to each service/support item, these were recorded by the facilitator. The facilitator then calculated the average of each sites’ rankings for each service/support during the NGT focus groups. The service item with the lowest average combined ranking received a group ranking of 1, the service item with the second lowest average combined score received a group ranking of 2, etc. These group rankings were presented to the participants for discussion and reflection as part of the NGT methodology (see Step 6, Table 2). The final overall rankings were based on the average of the individual scores across the three sites.

For the qualitative content analysis of participant decision-making in relation to rankings, emerging patterns were identified, coded and categorised from the data using NVivo8. The transcripts were reviewed line by line and concepts that explained the reasons for participants’ identification and ranking of supports and services were identified. Concepts were compared within and across groups to develop preliminary themes. Investigator triangulation was conducted with the group facilitator and wider research team. Themes were discussed in detail and, if necessary, revised to ensure that they reflected the full range and depth of the participants’ data.

Once the overall top five ranking for both personal and social NGT group stages had been established, the researchers reread the transcripts and paired the top ranked services and supports with associated qualitative themes or quotations directly or indirectly related to the support or service. A thematic schema was created for each of the top five ranked services in both stages which provided further insight into the rationale and reasoning behind the rankings.

Findings

The findings section has been divided into two sections, personal and social. Each section gives an overview of the final list of supports and services considered by participants, the top five nominal group rankings and the qualitative findings, originating from idea generation and clarification stages that help to explain the observed rankings.

Personal

List of supports and services

The final list of personal supports and services are presented in Table 3. A number of items were added to the list following suggestions by, and discussion among, participants.

Table 3.

Personal supports and services list.

Family carer education programme	A 6-session education course to develop family carers’ knowledge of dementia and caring skills to enable carers to respond more confidently to the needs of the relative or friend you provide care to
Family carer support group	A monthly meeting which provides the opportunity to meet other family carers of people with dementia in a similar situation, to share experiences and access information and practical advice in a relaxed environment
Alzheimer café	A monthly service that has a guest speaker come in and give information on different aspects of dementia. This offers the opportunity to meet others in the same situation to share stories, experience and advice. A healthcare professional or experienced dementia worker is present at each meeting
Social activities	Social activities that family carers and their friend or relative with dementia can enjoy together. Some examples may include dancing classes, singing groups or social clubs
Individual counselling	Sessions with a trained counsellor to listen and help family carers if they feel their caring responsibilities are impacting on their emotional, physical or mental well-being
Family counselling	Sessions with a trained counsellor that bring two or more family members together to improve communication and resolve conflicts
^aDay care	A day care service run by trained professionals for people with dementia to attend outside of the home. This service could run up to 3 days a week for 5 h a day to provide family carers with a break
Short-break respite	A trained professional being available to supervise the person with dementia in their home for a 2 h period every week to provide family carers with a short break
Befriending services	A volunteer being available to spend time with the person with dementia doing an activity they enjoy (e.g. baking, walking and chess) for a 2 h period every week to provide family carers with a short break
Long-break respite	Trained professionals would provide care to the person with dementia for a period of two weeks every year in a location outside of the home (e.g. a community hospital or nursing home) to provide family carers with a break from their caring responsibilities
Emergency respite	Family carers would be able to quickly access respite for their relative with dementia in the event of an emergency, for example hospital admission of family carer or other family member
Case management	Having a dedicated case manager to identify and coordinate health and social care services for family carers and their friend or relative they are providing care for
Personalised care budget	Following an assessment, family carers would receive a formal payment from the government to choose and arrange the necessary care for their relative or friend with dementia (home care, nursing visits, respite care, etc.)
General information helpline	A helpline which offers family carer general advice and information in relation to what dementia is, what services are available in your area and answer any general questions you have in relation to dementia
Emergency helpline	Phone support available from a trained professional in the event of an emergency, that is if there is risk to the immediate well-being of the person with dementia or family carer
^aCentralised data resource	A centralised data resource which would allow family carers to access important medical information if given permission by the person with dementia. This would allow family carers to provide relevant information to healthcare professionals if the person with dementia is not able to

^aAdditional supports and services identified for inclusion by family carer participants.

Nominal group ranking

Family carers in each site ranked personal supports and services as follows: in Dublin, the top personal support was long-break respite; in Kerry, day care was ranked first, while in Galway, family carer support group was ranked number one. Across the three groups, the top five priorities were day care, family carer support group, short-break respite, long-break respite and social activities (Table 4).

Table 4.

Personal supports and services nominal rankings.

Dublin		Kerry		Galway		Overall ranking
Long-break respite	1	Day care	1	Family carer support group	1	Day care	1
Short-break respite	2	Family carer support group/long-break respite	2	Short-break respite	2	Family carer support group	2
Family carer support group	3	Short-break respite	3	Family carer education programme	3	Short-break respite	3
Day care	4	Alzheimer café	4	Personalised care budget	4	Long-break respite	4
Social activities	5	Case management	5	Social activities	5	Social activities	5

Qualitative findings: Personal rankings

The thematic schema in Figure 1 highlights the conceptual links between the qualitative themes that emerged at the idea generation and clarification stages and the final rankings. We identified three main themes that explained participants’ ranking of personal elements: needing a break, social isolation and relationship changes. Full supporting quotations for each theme are provided in Supplementary Appendix B.

Figure 1.

Thematic schema for personal supports.

Needing a break

Higher rankings were given to individual supports or services if they allowed family carers to have a break from caring. Family carers discussed the demands imposed on them by the constant responsibility associated with caring for the person with dementia, describing these demands as physically and mentally draining, and requiring regular breaks to maintain their own well-being. However, admission to residential care was not viewed as the optimal solution from this constant responsibility as permanent separation would be (or had been in some cases) distressing for both the family carer and person with dementia – ‘I wish I could get a place in a nursing home and get a bit of a life. But then I know that it’ll be twice as bad if and when he does go in. I’ll be three times worse as I am now’ (A, wife carer). Consequently, the alternatives of day care, short-break respite and long-break respite were highly valued by family carers as an alternative to admission to residential care.

Despite long-break respite being highly valued, participants identified several issues associated with long-break respite delivery in Ireland. One family carer highlighted that spending a prolonged period of time in an unfamiliar environment could be unsettling for people with dementia – ‘I tried respite years ago. After two days my mam lost it. She refused to eat or drink and we had to take her home. But if you keep somebody in their own environment its half the battle’ (G, daughter carer). Another family carer recounted a separate incident where she was asked by staff to collect her husband from long-break respite prematurely – ‘He was getting quite agitated. I was surprised the nurse rang me because that was something I thought they would’ve been able to deal with. At the time I was gone away so it wasn’t as if I could go and pick him up’ (B, wife carer). In these instances, its not clear whether the service itself was unsuitable for people with dementia, or whether staff lacked the necessary training on complex behaviours sometimes associated with dementia, or both. It does highlight that family carers feel they cannot always rely on long-break respite services.

In relation to short-break respite, family carers highlighted that while two hours per week is valuable, they would prefer more hours per week – two hours was not enough given the pressure that carers are under. In some cases, family carers felt that the only alternative to long-break or short-break respite was to ask other family members for help. However, this could sometimes cause additional conflict within households, particularly if the primary family carer was receiving a monetary carer’s allowance – the implication being that if payment involved the need for respite was less recognised by others.

Social isolation

Family carers reported that their own informal support system and social networks reduced significantly due to their caring role. Relatives and friends were described as sometimes ‘disappearing’ from the family carers’ life. Others felt that relatives and friends lacked insight and empathy into the realities of the caring role, especially in regard to the amount of time taken up in doing the job. During the focus group, family carers highlighted that creating a peer support system with other family carers who understand the realities and challenges experienced was a very useful resource – ‘You can’t tell anyone. And like these [family carers] are my best friends and we tell everything here. We meet every two weeks’ (C, husband carer).

Changing relationship

The family carers discussed their changing relationship with the person with dementia and the implications this had on their day-to-day lives. In some cases, previously shared interests and hobbies were no longer accessible or appealing for the person with dementia, leading to feelings of loneliness and emotional distress for family carers – ‘You go away for a weekend, say you go down to Cork for a weekend, you’re sitting in a restaurant or BnB, you’re on your own and all the couples are around you. Its absolutely horrible, you just feel absolutely terrible you know’ (C, husband carer). In these instances, family carers had tried new ways of socialising and spending time together, but identifying alternative activities was sometimes challenging. Spending time outside of the home with the person with dementia was still considered important for family carers, but appropriate activities were not always available to them or as one carer said – ‘I would have loved to have gone away with my husband for a weekend to a hotel or BnB that offered a minding service’ (D, wife carer).

Social

List of supports and services

The final list of social supports and services is presented in Table 5. A number of items were added to the list following suggestions by, and discussion among, participants.

Table 5.

Social supports and services list.

Legal recognition	Legal recognition and definition of the role of family carers. This would include developing a set of entitlements and rights for family carers. This may include recognition of time spent caring as time at work, tax incentives, workplace policies, etc.
Community awareness programmes	Running an awareness programme within communities to increase awareness and understanding of dementia and try to address stigma
Monthly wage	Family carers would receive a monthly wage from the government for hours they spent caring for their relative with dementia
Carer’s support grant	Receiving an annual lump sum payment of €1700 from the government for the care provided to a person with dementia
^aCarer’s allowance (non-means tested)	All family carers receive a payment of €219 weekly for the care they provide to their relative with dementia
^bCarer’s allowance (means tested)	Low-income family carers receive a means-tested payment of €219 weekly for the care they provide to their relative with dementia. Currently, 20% of family carers in Ireland receive Carer’s allowance
Family carer work policies	This may include paid or unpaid carer leave, flexible working hours or part-time working arrangements to support family carers to provide care to their relative or friend with dementia
Tax credits	A tax incentive which allows tax paying family carers to subtract tax credits given for caring for their relative with dementia from the total amount of tax owed to the government
PRSI credits	Receiving PRSI credits for the period of time family carers spent providing care to a relative or friend with dementia which counts towards a contributory pension
^aComplex scheme navigation	A support service which would give family carers technical support and guidance on how to navigate complex social schemes, for example Fair Deal Scheme, advanced care directives, power of attorney, etc.
^aProfessional education	Education and awareness raising initiatives for professionals who deal with people with dementia and family carers (e.g. healthcare professionals or legal professionals)
^aFair Deal Scheme¹ review	A review of the impact the Fair Deal Nursing Home Scheme has on family carers’ potential to earn income
^aDementia-specific hospital departments	Having separate dementia-specific wards within acute hospitals with trained healthcare staff
^aFinancial aid for legal services	A financial aid scheme for legal costs associated with certain aspects of dementia, for example power of attorney

PRSI: Pay-Related Social Insurance.

^aAdditional supports and services identified for inclusion by family carer participants.

^bAccording to a recent survey, 20% of family carers qualify for carer’s allowance in Ireland (Family Carers Ireland, 2019a, 2019b).

Nominal group rankings

In Dublin and Galway, the top social support was non–means-tested carer’s allowance, while in Kerry, legal recognition was ranked first. Across the three groups the top five priorities identified were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes (Table 6).

Table 6.

Social supports and services: Nominal rankings.

Dublin		Kerry		Galway		Overall ranking
Carer’s allowance (non-means)	1	Legal recognition	1	Carer’s allowance (non-means)	1	Carer’s allowance (non-means)	1
Complex scheme navigation	2	Carer’s allowance (non-means)	2	Dementia-specific hospital departments	2	Legal recognition	2
Carer’s support grant	3	Community awareness	3	Legal recognition	3	Carer’s support grant	3
Professional education	3	Carer’s support grant	4	Fair Deal legislation review	4	Monthly wage	4
Legal recognition	4	Monthly wage	5	Financial aid for legal services	5	Community awareness	5

Qualitative findings: Social rankings

From the qualitative analysis, we identified three main themes that explained participants’ ranking of outcomes in the broader social environment: finances, rights and entitlements and stigma. Figure 2 highlights the conceptual links between the rankings and the qualitative themes. Appropriate supporting quotations for each theme are provided in Supplementary Appendix C.

Figure 2.

Thematic schema for wider social supports.

Finances

Family carers discussed finances at some length in all three sites. This is reflected in the overall rankings as three of the top five highest ranked social supports and services pertaining to finances. Caring responsibilities impacted on family carers’ capacity to earn income in the paid labour market; in some cases, there was a loss of two incomes in the household – ‘I mean finances went out the window on that day that we both stopped working. There’s no income so everything else has to be whatever savings you have which were supposed to be for the future.’ (E, wife carer). In addition to decreased labour market income, significant out-of-pocket expenses were associated with caring, including paying for some healthcare services and additional private social care supports. Socialising separately from the person with dementia was increasingly difficult, given the increased expense (paying for short-break respite care). The current social welfare system was perceived as penalising family carers’ present and future financial security despite their contribution to the care of the person with dementia. Specific examples of financial insecurity were given in reference to pensions, tax credits, means-tested carer’s allowance and the Fair Deal Scheme – ‘Once you qualify for Fair Deal, and then the dementia patient’s pension goes to Fair Deal then you’re not allowed to have any other income. Once they go into a nursing home you lose the Carer’s Allowance’ (E, wife carer). The fact that the current carer’s allowance is currently means tested was an enduring irritation for participants in the study.

Rights and entitlements

Carers perceived the current system as unfair and lacking transparency resulting in confusion around family carers’ entitlements. Eligibility for a service did not guarantee service provision and many carers had to develop skills at finding out what supports were available, when and for how long. Despite investing significant time and effort trying to access information and services, carers usually found that they were entitled to only minimal service provision and almost no monetary support – ‘There’s nothing. No rights exist for you. You have to go forage or fight’ (F, wife carer). Even when carers were entitled to services, inadequate public funding often meant the service was not available – ‘I’m constantly on the phone, I’ve a fantastic district nurse, she knows and will put in for 2 hours or 3 hours [home-care] but still hours going in from last September [one year ago] not approved because there’s no funding’ (G, daughter carer). Some participants felt family carers who were well connected to politicians or influential public figures were more likely to get supports, reflecting the disjointed and fragmented system of provision – ‘I know somebody who gets 38 hours a week home care. She has people coming three or four times a day. She has her four sons and husband. And here I am I’m really on my own and can’t even get out the door. I have 15 hours in total. She knows somebody’ (F, wife carer).

Stigma and awareness

The experience of stigma associated with dementia was discussed in all sites. Lack of awareness of dementia in the community was associated with the increased isolation experienced by both people with dementia and family carers – ‘I feel isolated as a couple because of Alzheimers. The attitude of people was difficult’ (I, wife carer). Participants felt the challenges experienced by family carers on a day-to-day basis are underestimated among non-carers. In addition to stigma among members of the public, a lack of understanding of dementia was identified among some care providers and more universally among the legal profession – ‘I mean the lack of education with us [family carers and people with dementia]! The lack of education in the system that’s supposed to be available to us!’ (H, daughter carer). Given the progressive nature of dementia, this often resulted in family carers and people with dementia not getting timely access to services and supports, such as legal support to organise power of attorney.

Discussion

Family carers are sometimes viewed as substitutes for long-term formal care provision within the policy-making process (Arksey & Glendinning, 2007). They provide the care that the state would otherwise have to fund at significant cost to the taxpayer. Although providing care voluntarily, one Irish study of spousal carers indicated many carers feel they have no other choice but to provide care (Pertl et al., 2019). Emotional ties, lack of care alternatives, economic factors, societal expectations and familial responsibility can be contributors to this perceived lack of choice (Al-Janabi et al., 2018). However, encouraging families not to support people with dementia is hardly a feasible option within the current Irish health and social care system; to do so would leave people with dementia bereft of care (Arksey & Glendinning, 2007; Spasova et al., 2018). Instead, public policy should be looking at ways of providing appropriate services and supports that would improve the lives of carers and facilitate them to care for longer, given that most people with dementia wish to remain in their own home (Rochford-Brennan, 2019). The findings of this article suggest that family carers are willing and able to identify helpful supports and services across personal and social domains. The next step is for government to address the priorities identified by carers.

In relation to personal supports and services, day care and short-break respite were ranked first and third, respectively, in terms of value for family carers. These services were important as they facilitated family carers to have regular breaks during the week. Research has highlighted that day care services provide family carers with a break from the constant responsibility (Dziegielewski & Ricks, 2001; Gaugler et al., 2003), leading to lower levels of carer burden among family carers and less demands on the health and social care system. Day care has also been identified as a potential source of emotional and informational support for family carers through engagement with empathetic and well informed professionals (Tretteteig et al., 2016, 2017). Short-break respite pilot initiatives have been positively received in the Irish context, with family carers and people with dementia placing a high value on meaningful engagement and person-centred approaches (Cahill et al., 2014a, 2014b). Home-based supports which allow family carers a short break can be cost-effective ways of addressing the growing care demands of people with dementia (Genet et al., 2011; Tarricone & Tsouros, 2008). However, our findings also highlight that while access to short-break respite of two hours per week is highly valued, some participants would prefer this break to be longer, giving them more time to do things for themselves.

Long-break overnight respite for a period of two weeks was fourth in the overall ranking of personal supports and services. There were concerns, however, that respite outside the home does not always yield significant benefits for the person with dementia. Carers felt that the person with dementia must also benefit from the respite service through engagement in relevant, purposeful and appropriate activities when in respite care facilities (Donath et al., 2009; O’Connell et al., 2012; O’Shea, Cahill et al., 2017, O’Shea, Timmons et al., 2017; Tretteteig et al., 2017). That was not always possible according to some family carers in this study, who referenced the potential for unhappiness and dislocation for people with dementia availing of long-break respite. Respite, which could offer overnight care in the home, was identified as an alternative to out-of-home respite during the NGT discussions. This had the advantage of maintaining people with dementia in their own home, while providing a significant overnight break to the carer.

Family carer support groups and social activities were prioritised as the second and fifth most important services, respectively. These services represented important sources of social support, socialising opportunities and shared activities. Prioritising the person with dementia, care responsibilities and stigma often result in lower social participation for family carers (Nay et al., 2015). Family carer support groups offered strong emotional and informational support from peers providing reassurance and alleviating feeling of social isolation (Brooker et al., 2017; Greenwood et al., 2017). Several family carers highlighted that their social life was very much tied to the social life of the person with dementia. Social activities that are accessible to the person with dementia and compatible with a caring lifestyle were viewed as important resources. Previous research has reported that shared activities are important in facilitating connectedness, meaningful communication, greater feelings of intimacy and positive effects among friends and family networks (Cassolato et al., 2010).

Three of the top five rankings in relation to social supports were linked to monetary and financial relief, including carer’s allowance (non-means tested), carer’s support grant and monthly wage. This was not surprising, as family carers’ current and prospective financial status has been shown to deteriorate for various reasons, including workforce withdrawal, early retirement, out-of-pocket expenses for caring costs and decline in their own health (Carmichael & Ercolani, 2016; Chen et al., 2019; Jacobs et al., 2014; Neubert et al., 2019). Three quarters (73%) of Irish family carers have reported they do not have enough money to cover care-related costs and meet their other expenses (Family Carers Ireland, 2019a, 2019b). Even family carers who remain employed while caring often experience substantial wage penalties in the workplace (Carmichael & Charles, 2003; Carmichael & Ercolani, 2016; Heitmueller & Inglis, 2007). If availing of the Fair Deal Scheme, spousal family carers will have to contribute 40% of their income for the duration of nursing home care (Health Service Executive, 2020). Therefore, it is unsurprising that financial supports were identified as important by family carers of people with dementia.

Financial support for family carers in Ireland is currently provided through a means-tested carer’s allowance covering one-fifth of all carers (Family Carers Ireland, 2019a, 2019b). It is not surprising, therefore, that carer’s allowance was given significant attention in each of the NGT groups. At the request of family carers, a non–means-tested carer’s allowance was added to the list of supports that participants could choose from – in addition to the means-tested carer’s allowance. The non–means-tested weekly allowance was identified as the most valuable social resource by participants. In contrast, the final overall ranking placed the means-tested carer’s allowance as the least important of all listed social supports. Rather than representing family carers’ true valuation, the low ranking given to the means-tested carer’s allowance may represent a protest vote in response to perceived unfairness in the Irish social welfare system and particularly the means-testing requirement associated with the current payment.

Participants ranked monthly wage in fourth place in terms of priorities. On the face of it, a monthly wage should represent a more formal recognition of the work of carers and, more than likely, be more financially lucrative than a non–means-tested carer’s allowance. However, family carers predicted increased familial disputes if people received a wage for caring, particularly if there was more than one carer in the family. In addition, the identification of verifiable caring roles (personal care, activities of daily living, instrumental activities of daily living, transportation and supervision) could lead to substantial administrative costs for family carers. In contrast, receiving a non–means-tested carer’s allowance was viewed as a simpler and more efficient public recognition of their caring role and would also facilitate access to additional government supports such as medical cards, transport grants, free travel and PRSI credits.

Family carers perceived that, due to the stigma of dementia and the lack of value placed on family carers, their social standing was reduced within society generally and within their own immediate social networks. Not surprisingly, therefore, legal recognition and community awareness were ranked as second and fifth most important social supports and services, respectively. Currently, there is no legal requirement on the Irish State to provide services such as home care, day care or respite care for family carers (Family Carers Ireland, 2018; O’Shea, Cahill et al., 2017, O’Shea, Timmons et al., 2017). Some family carers speculated that having influential connections or ‘knowing someone’ resulted in preferential treatment when accessing services but were adamant that this was no way to operate a system of supports for carers. Community awareness was discussed mainly in the context of reducing stigma experienced by people with dementia and family carers. Research has suggested that people with dementia are often perceived as lower status in their communities (Katsuno, 2005; Milne, 2010), resulting in family carers and people with dementia feeling isolated and unsupported by families, friends and peers (Betts Adams et al., 2008). According to carers, addressing stigma and encouraging a positive view of dementia would make the job of caring easier and less stressful, something that is currently happening in Ireland through the understand together programme (Understand Together, 2020).

Many carer advocacy agencies argue that family carers have been taken for granted within the Irish health and social care system. In 2019, family carers participated in a Carers Against Government Exploitation & Denial campaign to voice their dissatisfaction with current government policy (Family Carers Ireland, 2019a, 2019b). This article provided a direct opportunity for carers to voice their preferences and priorities for services and supports to support them in their caring role and address challenges within the informal care community. Given the wide-reaching impact caring has on all spheres of a carers life, incorporating ecological systems perspectives into future policy development should be central to any future developments. To reflect the diverse challenges posed by family caring, psychosocial approaches should include both personal and social responses, particularly enhanced day care provision and non–means-tested carer’s allowance. Increased investment in these supports would not only maintain family carers’ contributions to community care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability among carers and people with dementia.

Conclusion

Family carers in this study identified a wide range of challenges in relation to family caring, but they also had very clear views on what supports and services they would prioritise, both personal and social, if given the opportunity. Day care and non–means-tested carer’s allowance were two key priorities, the former providing more time for carers and the latter providing monetary compensation for their labour. While carers rank respite care highly, the current system of provision for both short-break and long-break respite does not always work well for people with dementia or for carers and needs to be addressed by policy makers. The current system of income support for family carers was also perceived as inadequate. Participants wanted the current means-tested payment to be replaced by universal provision.

A major factor in allowing priorities to be identified was the use of modified NGT methodology. The latter has traditionally been used to identify attributes of specific services and supports that are important to service users. Our research has shown that NGT methodologies can also be applied to help identify needs and gaps in provision beyond the immediate experience of the service user. The exercise produced a collective ranking of services and supports for family carers that may be of interest to policy makers in Ireland and elsewhere. It might also be interesting to use the NGT methodology to compare priorities among family carers across countries with different health and social care systems and varying cultural norms in regard to family responsibility for caring. Finally, family carers felt that the inclusion and separation of personal and social domains in the methodology was intuitive and reflected their experience and perspective of caring roles and needs.

Limitations

While the NGT approach can be a valuable tool in both policy and research, there are some caveats, not least the huge time commitment required for family carers to participate in this research. In some cases, the participants, already financially stretched as our findings reveal, had to pay for replacement care for the person with dementia for the duration of the NGT group. We recommend that the cost of replacement care is accounted for in future research budgets. We also acknowledge that the service/support lists do not encapsulate the entirety of existing psychosocial supports or services, although there were no constraints on what carers could add to the initial lists. The sample is also small and clearly not representative of the views of all family carers of people with dementia in Ireland, but it does provide important insights into the thinking of carers when it comes to making choices among different services and supports.

Although the NGT approach facilitated multi-perspective discussion of individual ideas which informed individual rankings of services and supports, we cannot be sure of the extent to which prior service use and satisfaction, unmet needs and the availability of services in the three sites may have unconsciously impacted on individual rankings. NGT participants were instructed to consider what services and supports would be most helpful for other family carers as well as themselves during the ranking exercise. In some cases, there was clear evidence that family carers separated their own experiences from the ranking exercise. For example although family carers voiced dissatisfaction with existing long-break respite provision, it was still ranked highly as a valuable service for carers. Conversely, carer rankings of the means-tested carer’s allowance may have been based on negative personal experiences, for example not qualifying for the payment, rather than on the general benefits.

Finally, the ranking exercises took place in areas with different availability of dementia-specific services, leading to unmet service needs among people living there, that could have idiosyncratic effects on the rankings. However, despite significantly lower availability of dementia-specific services in Kerry than Galway and Dublin (National Dementia Office et al., 2016), broadly similar themes and ranking patterns emerged in all three NGT groups. This suggests family carers identified similar services and supports as important, regardless of current levels of provision in their area, demonstrating both consistency and robustness in the methodology and the rankings.

Supplemental Material

sj-pdf-1-dem-10.1177_1471301220984907 – Supplemental Material for Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland

Supplemental Material, sj-pdf-1-dem-10.1177_1471301220984907 for Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland by Áine Teahan, Patricia Carney, Suzanne Cahill and Eamon O’Shea in Dementia

Footnotes

Acknowledgements

The authors would like to thank Tom McCann, Regina Lafferty, Seán O’Sullivan, Patricia Maher and Eilís Uí Fhaircheallaigh for their assistance with recruiting family carers to participate in this research study. We would also like to acknowledge and thank the family carers who contributed to or participated in this research.

Author’s Contribution

ÁT conceived and designed the analysis, performed the analysis and drafted the manuscript. PC participated in the data collection and in revising the manuscript. SC contributed to the study’s research design and participated in revising the manuscript. EOS contributed to the design and conception of the study analysis, provided input to the interpretation of the results and participated in drafting and revising the manuscript.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by the Health Research Board, Ireland, and the Irish Research Council.

ORCID iD

Áine Teahan

Supplemental Material

Supplemental material for this article is available online.

Note

Áine Teahan, is a PhD researcher in the Centre for Economic and Social Research on Dementia (CESRD) in NUI Galway. Áine has worked on several research projects exploring aspects of dementia including prevention, family carer well-being and resilience, community awareness and individualised care. Áine’s current research explores psychosocial supports for family carers of people with dementia from several angles including psychosocial outcomes for family carers, evaluation of supports in Ireland, identifying family carer preference and exploring public support and willingness to pay for additional services.

Patricia Carney, is currently working as a Senior Public Health Research Officer in Health Service Executive Midlands Region in Ireland. Her main expertise is estimating economic, social and health costs through the application of a variety of qualitative and quantitative techniques. Patricia’s research to date focuses primarily on public health and ageing, dementia, social and healthcare policy. She led a national study investigating the needs of family carers of people recently diagnosed with dementia. Patricia previously led the evaluation of The Atlantic Philanthropies' dementia investment in Ireland, determining how the investment impacted the landscape of dementia care in Ireland.

Suzanne Cahill, is an Adjunct Professor of Social Work and Social Policy at Trinity College Dublin and an honorary Professor in dementia care at the CESRD in NUI Galway. She is also an affiliated Professor in health and welfare at the University of Jönköping in Sweden. Suzanne’s research interests include human rights and dementia, young-onset dementia, chronic disease management and dementia and formal and informal caregiving. Her work has been published in a diverse range of medical and social science journals. She is the author of the book titled: ‘Dementia and human rights’. Her new book due out in 2021, is titled: ‘Perspectives on the person with dementia and family caregiving in Ireland’.

Eamon O’Shea is a Professor of Economics at the National University of Ireland Galway and Director of the Centre for Economic and Social Research on Dementia. He is a Health Research Board (HRB) Research Leader in dementia in Ireland

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