Community-based dementia day programmes: Common elements and outcome measures

Abstract

Dementia Day programmes are considered important in supporting the well-being of both people living with dementia and their caregivers. There is, however, limited evidence on the effectiveness of these programmes. This article reports on a study undertaken in New Zealand on the effectiveness of community-based dementia day programmes. The small-scale pilot study was aimed at investigating the elements that make up an effective client-focused dementia day programme and the methods employed by organisations to measure the outcomes of these programmes. A mixed methods approach was employed with multiple stakeholders. The research revealed that effective day programmes comprised five core elements, and that surveys, reporting and auditing processes are routinely used to measure the quality of outcomes of day programmes. Although these findings are reflective of a specific context, it raises concerns about the nature and availability of evidence informing decisions regarding the design and implementation of day programmes internationally.

Keywords

community day programmes outcome measures dementia mixed methods client-focused

Background

New Zealand faces the same global challenge of many other countries; an ageing population with an increased demand on services for older people. As the proportion of people over 65 years of age continues to grow, so too will the demand on health services at the community and national level. The aging Western population brings attendant issues of caring for older people and an increase in age-related health issues, including dementia. Dementia is an important medical and social issue that is only going to increase with an aging population (Aminzadeh, Molnar, Dalziel, & Ayotte, 2012; Bartfay & Bartfay, 2014; Fields, Anderson, & Dabelko-Schoeny, 2014; Phillipson & Jones, 2012; Shanley, 2006). Dementia is not a single disease, but describes a collection of progressive and incurable symptoms which are progressive and incurable, including memory loss, disorientation, wandering, problems with reasoning and communication skills, a reduced ability to carry out daily activities and also depression, anxiety or loss of personhood (Alzheimer’s New Zealand, 2012; Fitzgerald & Associates, 2007; Kirkman, 2006). Although there is a growing prevalence of younger people living with dementia, the vast majority of people are 65 years of age or older (Alzheimer’s New Zealand, 2012). For the purpose of this article, the emphasis will be only on older adults aged 65–90 years, as this was the age range of participants included in the study.

Provision of effective care to people living with dementia is fundamental to addressing this global issue now, and in the future. Community-based care is designed to reduce financial costs, but increases the emotional and physical costs on family and other informal support networks (Bartfay & Bartfay, 2014). Day programmes seem to provide an important aspect of the care continuum supporting the well-being of both older people living with dementia and their caregivers and an example of care provided outside the home but within the community. These day programmes are designed to provide psychosocial or physical health functioning benefits to participants as well as respite for caregivers (Dabelko & Zimmerman, 2008). In many contexts, day programmes are also referred to as day care programmes, or adult day services (Kim, Kim, Yoo, Hahn, & Yeom, 2002). There are significant within-model variations in service delivery, but generally speaking, day services can be divided into three models: the medical model, the social model and the combined model (Van Beveren & Hetherington, 1998). A key drive of these day programmes is to try to keep people living with dementia in their homes for as long as possible (Gaugler, ‘Process of Adult Day Service Use’, 2014; Gústafsdóttir, 2011). The focus of the research reported in this article, was on a day programme regarded as a non-residential day service utilising a social care model and although based in the community, excluded home-based services.

Adult day programmes, also called adult day care or adult day services, are discussed in the international literature from a range of perspectives, including the impact on carer well-being (e.g. Gaugler et al., 2003), improvement of client functioning (Gaugler & Zarit, 2001) and quality of life for participants and carers (Camic, Williams, & Meeten, 2013; Curran, 1996; Gústafsdóttir, 2011) or the value of such programmes for particular populations (Grinberg & Phillips, 2009). While research indicates improvement for carers, more research is needed on the positive impact for service users (Dabelko-Schoeny & King, 2010). Western day programmes have dominated this research, but non-Western countries are now starting to be examined (e.g. Taiwan, see Liou & Jarrot, 2013). It has been noted that there is variation in the models of day services used by different countries, and some comparative research in this area may be beneficial to gain a global perspective (Iecovitch & Biderman, 2013).

Existing day programmes are not always well utilised by those they are intended to serve. As Iecovitch and Biderman (2013) state, regardless of the important goals of adult day services, they need to be utilised to be of benefit. Their study of non-use of adult day services (not dementia-specific), cited numbers as low as 7% of those entitled using the services (Iecovitch & Biderman, 2013, p. 562). Barriers to service use included programme content, perception of the other participants, perception of no need for the service and preference to stay at home (Iecovitch & Biderman, 2013). Another identified factor in non-use is that carers do not always perceive the benefits for people living with dementia (Brodaty, Thomson, Thompson, & Fine, 2005; Phillipson & Jones, 2012). Possible ways to improve service underuse include improvement of programme activities and environments, caregiver assessment and support, training staff in dementia care (Phillipson & Jones, 2012), better promotion of services (Gaugler, 2014), destigmatising dementia and encouraging referrals from health professionals (Brodaty et al., 2005). Shanley (2006) found programme flexibility to allow more tailored services could increase use.

While recognising that the disparity of programme types, providers and participants creates challenges in measuring participant outcomes, the task of assessment and evaluation is of increasing importance to health and social service agencies (Dabelko & Zimmerman, 2008). At a policy-level, many countries have articulated that dementia is a matter of national priority. Australia, England, Scotland and Wales have either formally recognised dementia as a national health priority or have advanced national dementia strategies. The United States Congress passed legislation in late 2010 to help lay the foundations for a specific dementia policy in the near future (DementiaToday.com, 2013). Policy recognition affects the amount of funding available and associated services for dementia-related care has notably increased in these countries (Department of Health, 2009; National Ageing Research Institute, 2007). Most pertinent is that community-based care for people living with dementia such as day programmes are recognised as a significant and beneficial service for clients and their caregivers by the Australian, English, Scottish and Welsh governments.

Guided by the international literature and the paucity of evaluative research on New Zealand programmes the research focused on evaluating the effectiveness of day programmes and investigating how those programmes are measured for quality of outcome. The result was two overarching research questions that guided the project:

What are the elements that make up an effective client-focused day programme for people living with dementia?

What are the methods employed by organisations to measure the quality of outcomes of their day programmes?

Programmes for people living with dementia in New Zealand

Mirroring the international situation, New Zealand’s population is aging, and with this comes greater numbers of people affected by dementia – either as people living with dementia or as family of people living with dementia (Ministry of Health (MoH), 2013). In 2011, there were just over 48,182 people with dementia; by 2026, it is predicted that 74,821 people or 1.5% of the country’s population will have some form of dementia and that this proportion will only continue to grow (MoH, 2011). An increase in numbers creates increases in financial costs. In New Zealand in 2011, the total financial cost of dementia was estimated to be $954.8 million (NZD). Only three years earlier, the figure was almost a quarter of a billion New Zealand dollars lower at an estimated $712.9 million (NZD) (Alzheimer’s New Zealand, 2008). Gallrach (2010) notes the importance of developing a systematic national approach to dementia care and suggests that a range of psychosocial and financial incentives are likely to be key in the future to supporting people living with dementia to remain at home with support of their caregivers. These financial pressures highlight the need to ensure services, such as day programmes are effective and provide good outcomes.

Another aspect of New Zealand’s future dementia population is the projected increase in non-European people affected by dementia (MoH, 2013). In 2011, Maori (4%), Asian (3.7%) and Pacific people (1.9%) only accounted for 9.6% of the total number of New Zealanders with dementia. By 2026, it is estimated that this will rise to 16% (Maori 5%, Asian 8.4%, Pacific people 2.6%) (Alzheimer’s New Zealand, 2012). This shift in demographics raises issues for day programmes to have greater awareness around cultural and language-based needs. The Ministry of Health noted that different cultural views on dementia may be factors in delaying families seeking support, stress for carers and quality of life for the person with dementia (MoH, 2013, p. 2). It is within this context that the research reported in this article was undertaken.

New Zealand’s policy framework for the provision of care for people living with dementia is based on two major government strategy documents that were published in the 2000s. Firstly, the Ministry of Social Development’s Positive Ageing Strategy which was released in April 2001 (Ministry of Social Development, (MSD), 2001) and secondly, the Ministry of Health’s Health of Older People Strategy (MoH, 2002). A primary objective of the Health of Older People Strategy is to support older people ‘to age in place in the community’ with an increased emphasis on primary and community health care (MoH, 2002, p. 46; Schofield, Davey, Keeling, & Parsons, 2006, p. 275) and reflects international trends towards ‘aging in place’ through care at the community level (Kirkman, 2011, p. 3). Older peoples’ quality of life within the community remains of central importance in the Health of Older People Strategy (MoH, 2002). Important objectives included the desire to give older people the power to make choices which would enable them to participate in the community, live a ‘satisfying life’ and have a ‘healthy lifestyle’, but also have access to a range of services necessary to ‘live with confidence in a secure environment’ (MSD, 2001). Such policies are limited in their generalised nature rather than being specifically designed for individual needs (Cox, 2005, p. 44). Although this policy framework helps guide the provision of dementia care in this country, the role or effect dementia plays in the lives of older New Zealanders is not adequately addressed in this second policy document, nor does the New Zealand Government currently have any significant policies in place that specifically addresses dementia.

Dementia: A Strategic Framework (Alzheimer’s New Zealand, 2014) calls on the government to provide a New Zealand Dementia Strategy. New Zealand has been slow to recognise dementia as a national health priority, though there are indications of a shift in this area with the recent New Zealand Framework for Dementia Care (MoH, 2013). The framework recognises that dementia services need to be ‘improved nationwide in a way that maximises the independence and well-being of the person with dementia and their family and whānau while ensuring the safety and affordability of services’ (MoH, 2013, p. 1). Although not addressing day programmes specifically, the above is in line with the internationally recognised rationale for day programmes.

There is a dearth of academic research on New Zealand day programmes. Parsons, Rouse, Robinson, Sheridan, and Connolly (2012) in their article on ‘Goal setting as a feature of homecare services for older people: Does it make a difference?’ identify the importance of shifting from the philosophical stance of ‘taking care’ of the client to provision of care which maximises independence, self-esteem, self-image and quality of life, and reduces the care required, is also relevant to client goal setting in day programmes. The New Zealand Council of Christian Social Services highlighted the need to (a) document the extent and scope of day programmes for people living with dementia and (b) the role of day programmes as part of community support and respite care needs to be evaluated to identify the outcomes for people living with dementia and their carers (The New Zealand Council of Christian Social Services, 2009) . Major challenges of day programme provision include the need for staff training in dementia care as well as recruitment and retention of dementia care workers (Alzheimer’s New Zealand, 2010; The New Zealand Council of Christian Social Services, 2009). Government policy and organisations describing their own work and programmes (highly accessible on the Internet) form the bulk of information about older adult day programmes in New Zealand.

The organisations in New Zealand which provide day programmes for people living with dementia are predominantly non-government organisations (NGOs) that offer a range of services at the community level. There is no one central repository of identifying day programmes in New Zealand. Numerous organisations advertise their day programme services via the internet and while these programmes cover main cities and many towns, those in the rural communities have difficulty accessing services. The research reported in this article relates to day programmes offered by Presbyterian Support Northern (PSN), a large NGO with several hundred employees covering the upper North Island of New Zealand.

Methodology

Design

As mentioned earlier, the research was guided by two overarching research questions: (a) what are the elements that make up an effective client-focused day programme for people living with dementia and (b) what are the methods employed by organisations to measure the quality of outcomes of their day programmes? In an attempt to answer these questions, this research employed a mixed methods approach (Johnson & Onwuegbuzie, 2004). It allowed for the two research questions to be considered from both an in-depth and contextualised qualitative perspective, alongside measurable quantitative data.

A case study design was implemented and two PSN Enliven day programme sites were sampled to explore the research question: the Counties Manukau Programme and the Hamilton day programme. Data collection was exclusively situated within these two sites. According to Yin (2014), case studies allow researchers to focus on a ‘case’ (in this instance two sites delivering a particular programme) and to retain a ‘…holistic and real-world perspective’ (Yin, 2014, p. 4). Prior to the fieldwork, and alongside the international literature review, a document review was undertaken to identify common elements of effective programmes and measures utilised to assess outcomes. The document review included two key organisational documents such as policies, procedures, client forms and reports from the organisation under study (PSN) regarding the initial establishment and delivery of the day programmes (Enliven, 2013; PSN Enliven Services for Older People, 2011). The document review provided a background for the fieldwork and informed the questions for the questionnaire and interviews.

Study setting

The research was undertaken in partnership with PSN, a large NGO offering a range of social services in the upper North Island of New Zealand. This organisation offers day programmes through Enliven, a service division of PSN, which caters for older people in need of health assistance at both the domestic and community level. Enliven runs community-based day programmes in five locations, funded by the District Health Boards (DHBs) in those areas. Two research sites were selected by PSN based on location and population demographics: Hamilton city (attracts mainly European and Maori clients) and Auckland city (attracts mainly Pasifika, Maori and European clients). The programmes are offered up to five days a week with between 15 and 25 people per day (PSN Enliven Services for Older People, 2011). The number of days a week that a client attends depends on their needs. The programmes are run by staff trained in the care of older persons, including people living with dementia. Food is provided, and transport to and from the day programme is available. The programmes encourage community connectedness with various opportunities for social interaction and a range of different individual, group or functional activities. Relief or time out for caregivers (e.g. spouses or family members) is an important feature of the PSN day programme service (Enliven, 2013; PSN Enliven Services for Older People, 2011).

Sampling and recruitment of participants

Two PSN Enliven day programme sites were selected through convenience sampling: the Counties Manukau Programme and the Hamilton day programme. The participants in this study included all individuals involved with these programmes as staff or clients, including people living with dementia and their caregivers, support workers from the day programmes, drivers and key stakeholders, namely managers from the organisation (PSN) and managers from the contracting health board (DHB). Due to the fact that only two sites were identified in this small-scaled study and the small sample size, no demographic information was collected from any participants to ensure confidentiality.

All participants except the senior managers of the DHBs were approached initially via senior staff members of PSN. This was part of the convenience sampling strategy to enable maximum participation with an externally contracted research team. Client participants and their caregivers were approached together by senior staff members to ensure their understanding of what the study was aiming to do and how they would contribute. To adhere with ethical guidelines and to ensure that no participants felt obliged to participate, all participants consented individually to the researchers by providing written consent. No information about staff participation or non-participation was shared with the employer, nor were non-response to participation followed up by the researchers.

People living with dementia and their caregivers are central to this study: their experiences and ideas were fundamental to the data set gathered and the ability to answer our research question about effective day programmes. Clients and caregivers were divided into two groups related to their involvement in the research. ‘Group A’ comprised eight people living with dementia (four from each site: four males and four females), who completed the photovoice and their caregivers (eight in total) who completed a questionnaire and participated in a phone interview. ‘Group B’ comprised 29 caregivers, who completed only the questionnaire. These groups were used to ensure a greater reach of client perspectives, and Group A was carefully selected to provide a mix of male and female, as well as Maori, Pasifika and European clients. The age range of the participants in the day programmes is 65–90 years. The ethnic mix of the day programmes tended to reflect the demographic composition of the wider community. In Hamilton, the Team Leader noted that the majority of their attendee population was comprised of middle class, European heritage clients and a few Maori. The Counties Manukau day programme on the other hand is located in Manurewa in South Auckland which has a significantly higher Maori and Pacific population compared to Hamilton.

Support workers and drivers are an important part of the social world of the day programme, providing a service while also forming relationships and gaining the trust of the people with dementia and their caregivers. These participants (4 drivers and 17 support workers) all provided insights into the effectiveness of day programmes.

From a management level, nine key stakeholders (five PSN managers and four DHB managers) were included to gather an understanding of the effectiveness as well as the quality measures of day programmes. DHB managers provided ideas about quality assurance and contributed views on the provisions of day programmes, especially in the context of keeping older peoples in their own homes for as long as possible. PSN managers delivered a strategic view, with a view on programme design, the restorative nature of day programmes, thinking around challenges for future planning and the question of generic versus tailored programmes.

Data collection methods

Various methods were used to capture various stakeholders’ views (see summary in Table 1). The range of methods allowed for a triangulation of the data, which provided confidence in the credibility of the themes identified in the thematic analysis. The data from both Hamilton and South Auckland sites was collected individually but combined for analysis and reporting at the request of PSN.

Table 1.

Summary of participants and data collection methods.

Participants	Participants	Data collection methods
Site A		Site observations
Site B
People living with dementia (65–90 years) Group A only	8 (4 males and 4 females from each site)	Photovoice
Caregivers
• Group A	8 (4 from each site)	Telephone interviews Questionnaires
• Group B	29 (representing both sites)	Questionnaires
Drivers	4	Face-to-face interviews
Support workers	10	Emailed questionnaire
	7	Face-to-face interviews
Key stakeholders
• Managers/team leaders PSN	5	Face-to-face interviews
• Managers DHB	4	Face-to-face interviews

Site observations

We have used observations at both sites prior to face-to-face interviews in order to allow the research team to observe the various activities and to meet some of the clients and staff in an unstructured way. This enabled us to record clients’ experiences from an ethnographic, participatory perspective. The physical site where day programmes are held has been noted in the literature as an important consideration for how service users interact with those spaces (De Bruin et al., 2009; Gaugler, 2014)

Photovoice

Photovoice captured a day in the life of a client living with dementia before, during and after attending the day programme. As work with photovoice and dementia has shown, everyday experiences and activities, including leisure, have meaning for identity and personhood and such an approach privileges the voices of people living with dementia (Genoe & Dupuis, 2013). Photovoice entrusts cameras to the hands of people to enable them to act as recorders in their own lives and potential catalysts for change such as to improve services (Wang & Burris, 1997, p. 369). Team leaders at each site identified eligible clients and their respective caregivers to be approached for potential participation. In addition, drivers and day workers worked with clients to take photos. A total of eight (two males and females at the two sites) clients consented.

Questionnaires

Questionnaires were used to explore the benefits to caregivers and their family member attending the programme, along with suggestions for programme improvements. A total of 29 caregivers in ‘Group B’ were sent questionnaires with 15 completing the questionnaires. Questionnaires were also given to the four caregivers from each site (eight in total) from ‘Group A’ which they completed. An additional 10 support staff members completed a questionnaire by email that aimed to explore the dimensions of the programme, the maximising independence approach, meeting client’s individual needs, staff training, staff client data collection and use of technology in the programme. The completed questionnaires totalled 33.

Interviews

We conducted face-to-face interviews with four drivers who transported clients to and from the programmes and often interacted with their caregivers. They provided insight into how the clients were presenting and informal social engagement coming to the programme, arriving and going home. The support staff took part in either a face-to-face interview (seven staff) or an email survey (10) as discussed above. The key stakeholders (five senior managers from PSN and four from the DHBs) took part in face-to-face interviews designed to illicit their views on organisational programme implementation, strategic overview, elements that make up an effective day programme, culturally appropriate programmes, staffing, funding and quality measures of effective day programmes. Clients and their caregivers comprised eight people (four from each site: four males and four females), who completed a phone interview, alongside the photovoice and questionnaire (as highlighted above).

Ethical considerations

Impact Research NZ conducts its research in line with the Association of Social Science Researchers standard guidelines. The ethical considerations pertained mostly to anonymity and confidentiality. Participants’ informed consent was obtained in writing. Prior to embarking on the fieldwork, the researchers followed up with all participants by phone to ensure all ethical considerations were addressed. A number of authors highlight the ethical issues, such as capacity and accessibility when using photovoice with populations experiencing various forms of illness and disability (Frith & Harcourt, 2007; Lal, Jarus, & Suto, 2012; Wiersma, 2011). The involvement of participants in the collection of data and the careful attention of informed consent by caregivers in consultation with their family members were effectively utilised to manage these challenges. Moyle (2012) highlighted the influence of age and extent of cognitive impairment can impact on the level of participation. Taking this into consideration, we decided to have those closest to the client help out with the photographs and provide context. Although this is a fairly new method in the field of dementia research, we believe it was effective to enable participation at some level of the person living with dementia.

Analysis

The range of methods used for data collection allowed for a triangulation of common themes across the data set. The data from the face-to-face individual interviews as well as the recorded telephone interviews were combined and analysed using inductive thematic analysis (Thomas, 2006). This involved reading the transcripts and comments to establish keywords and emerging themes, and repeat readings to check and refine established themes. Themes were organised into broad categories and selected quotes from respondents’ accounts were used to illustrate the themes. We used the data from the photovoice (photos and supporting scripts from participants) to provide the client voice and used our notes from the site observations to augment the data.

All the quantitative data from the questionnaires were entered into a spreadsheet and basic descriptive analysis was conducted. The aim of descriptive methods is to produce a scope of the characteristics of distributions. This can be done by various methods, including the use of frequencies (Bryman, 2012). Analysis of this data using constant comparison between cases provided a distillation of participants’ experiential knowledge.

Findings

The findings from the study are described here in two parts. The first part focuses on common elements which answers the first research question and highlights five elements that emerged from the data: a client service based on individual support plans that incorporate activities aimed at improved client functioning, service processes, caregiver benefits, workforce capability and cultural responsiveness. The second part focuses on Methods to measure the quality of outcomes, which answers the second research question, and briefly highlights two methods, namely reporting and auditing processes as well as surveys.

Survey data were gathered from 23 caregivers (10 from Auckland and 13 from Hamilton).The majority of the caregivers were female (87%) with the remainder being male. The age distribution of the 23 caregivers highlighted that more than 50% of the caregivers were older than 65 years of age themselves, while 50% were of working age.

Caregivers highlighted the importance of being able to opt into a range of days for their spouse or family member to attend day programmes based on their changing needs over time. Forty percent of the clients attended one or two days a week, while 60% of the clients attended three days or more a week with several participants attending a full five days a week. While some clients have been attending the day programme for several years, other attendees had only been going for one to four months. The majority of clients lived with a family member or caregiver while a few lived independently with a daily visit by a caregiver who helped with their daily routine and providing transport. The level of individual diagnosis and duration of each client’s engagement with the day programme obviously impacted the data.

Common elements

Common elements of day programmes derived from the document review were considered alongside relevant literature and findings from the data to inform research question 1.

Client-focused service

One of the key themes from the data to emerge was the client-focused nature of the day programmes. Being attentive to the individual needs of each client is a key aspect reported by interviewees and survey participants as a point of difference to other dementia-based services. Through specifically recognising that every client has different interests and needs, the day programme staff are reportedly able to support attendees to strive to achieve their individual goals. This is done through having individualised support plans, which build on the original Needs Assessment and Service Coordination Service (NASC) assessments and subsequently offering a variety of activities that are based on the client’s interests and hobbies on a day-to-day or weekly basis. While some activities are carried out with support workers on a one-to-one basis, other activities are provided to clients as a group. The day programmes reportedly offer a wide range of activities across each week, depending on client interests and their individualised support plans. Over 90% of the caregivers indicated that they believed the staff were effective in meeting the individual needs of the clients.

Activities aimed at improved client functioning

One of the strongest themes that emerged from participants’ responses, related to particular activities aimed at the people living with dementia. Social and physical activities were widely regarded as an effective intervention to improve social skills and social inclusion, raising self-confidence and self-esteem, and minimising the risk of depression. One caregiver said: ‘I know it’s working because she waits for the van to come and pick her up. She tells me that it’s her saving grace almost, because when Dad died she was just terribly lonely’ (Caregiver 4). Another identified the social interaction: ‘He’s happy there,…. So it’s good for him to go and meet other people. He arrives home quite bright and chirpy’ (Caregiver 2).

Survey results indicated that the majority of participants (74%) agreed that the day programme made a positive difference for their spouse or family member, while 17% had a neutral response and 9% disagreed. Several caregivers indicated that their spouse or family member participated in a range of activities across each week and that they remembered some aspects of their weekly attendance such as singing, cooking, gardening, arts and crafts, and going on outings to places of interest.

I know that they do some gardening and they do craft activities. They have singing (Caregiver 4).

We’ve got a good choir group in here. There’s [also] one guy here that can play the piano…we just put them all around the piano and away they go (Support Worker 2).

Caregivers also reported the benefits of programmes that cater for particular groups of people living with dementia. One such example is the ‘Bloke’s Club’ at one site (Hamilton). Men meet at a socially acceptable time (early evenings) once a week and engage in meaningful activity, such as carpentry and outings to places of interest. The men took ownership of the club, with one support worker identifying that ‘My role is as a facilitator, I see it as an empowerment role where my job is to support the men who belong to the [Bloke’s] Club to make the decisions the Club wants to make’ (Support Worker 1).

Several caregivers reported that they would like to be able to discuss what had happened on the days their spouse or family member goes to the day programme

I think that was one of the biggest disappointments for me the first time he ever went, when he came home I thought he would be able to bring something home that we can talk about. He goes off and I don’t really know what they do all day because he can’t tell me. (Caregiver 2)

We utilised photovoice as a method as it enabled the clients’ (family member living with dementia) voices in the day programmes to be heard. We loosely interpreted ‘voice’ as the photographs representing the experiences’ of the clients and shared interpretation of them by participants taking the photos and the researchers interpreting them. The aim of using our version of photovoice was to enable people close to the client to engage with the client through recording and reflecting with them their experiences during one day of attending a day programme. Analysis of photovoice and interview data indicated that photos are regarded as an innovative way to document the way that various activities are used to both enhance client learning and generate feelings of success. In response to the photovoice exercise, caregivers reported that the photos and comments from all involved helped them to know more about what their spouse or family member participated in on the programme and this meant that they were potentially able to try and engage with their family member in more meaningful dialogue.

Service processes

Communication between programme staff and caregivers was identified as providing a link between the home and programme environments. More communication was identified as a need, as eloquently captured in this statement by one caregiver:

Maybe they could write out a little programme of what they’ve done for the day, just quickly, a little what they’ve done and what they had for lunch. If he brought a note home with him, we could talk about that then. (Caregiver 2).

In the programmes under consideration, clients have either free or paid access to transport arranged by the programme provider and food provided throughout the day. This was highly valued by all participants, as providing transport and food reportedly helped create a routine and security for the clients.

Caregiver benefits

One of the core elements of the day programmes was regarded as relief to caregivers. Over 90% of the caregivers indicated that having their family member attend the day programme with well-trained staff made a significant difference to their and other family members’ well-being and life enjoyment, while the remaining 10% were neutral in response. Caregivers reported that having relief from caring enabled their participation in work and leisure activities, a reduction in stress and to support the client better. Three main themes emerged from the interview data on perceived benefits to the caregivers themselves by having their spouse or family member attend the day programme. These are: (1) ability to keep working: ‘It allows me to work, to still have an income. I can meet all my family’s needs’ (Caregiver 5); (2) a reduction in stress:

Knowing the ladies that are there. I know that she is in safe hands. I know that I don’t have to worry, if I call in during the day, whether she’s going to be off somewhere and losing her way, not being able to find her way back (Caregiver 4);

and (3) being able to enjoy other activities:

The main benefit for me is that I have some times during the day to do a few jobs that need to be done…. For me it’s good. I can do the supermarket shopping or things like that without having to take him with me. (Caregiver 6)

Additionally, the potential of delayed nursing home placement for the person living with dementia through focusing on the needs of the caregiver was raised:

…it might just be two days a week; if they can [have] just two days a week…. That might be the package that keeps them out of a residential care facility. Now that’s a very small cost in money but the cost on that family if they don’t have [those days] is very high (Key Stakeholder 1).

Workforce capability

Key stakeholders reported that developing the targeted programmes required a focus on ‘increasing our workforce, skill base and capacity in managing dementia’ (key stakeholder 1). Training was identified by the managers of both sites as a key element of an effective day programme. A sub-theme generated from the interview data comprised the need for both paid staff and volunteer staff training. The ability of staff members to not only ‘do the job’, but understand the complexity of dementia and have absolute clarity on their respective duties, was highlighted as a key factor in effective engagement with the programme. Another theme focused on the key qualities of staff, including having ‘a damned good sense of humour’ (Support Worker 2) and being ‘calm, have a lot of empathy for the elderly’ (Support Worker 4). It was not only caring for the person living with dementia, but caring about them.

Cultural responsiveness

The day programmes were reported as responsive to clients and caregivers’ cultural needs and participants often mentioned that staff members are able to care for clients in a culturally appropriate manner. One caregiver noted that: ‘It was good to see Maori [indigenous population of New Zealand] women on the staff, it gives me a feeling of safety’ (Caregiver 8). But more broadly than this, both programmes adopted a bicultural framework, recognising Maori as tangata whanua (indigenous people), through culturally responsive activities such as karakia (prayer) before eating and some use of Te Reo (Maori language). One caregiver noted the changes towards a more multicultural awareness with ‘non-English greetings often used’ (Caregiver 5). The site observation further supports this view, for example, with the celebration of the Pasifika festival taking centre stage with Pacific-style decorations, food and activities.

Methods to measure the quality of outcomes

The document review provided insights on the methods employed to measure the quality of outcomes of day programmes, which were considered in the context of relevant literature. The findings from the data were used alongside these insights to develop an understanding of the methods employed, in response to research question 2.

Reporting and auditing processes

The contracting government agency (DHB) have clear expectations that community agencies will report on quarterly and six monthly bases and engage in auditing processes. This enables providers to use these measures to demonstrate what they are doing well, that the needs of the clients are being met and identify any problems with how their service provision. Quarterly reports are further augmented with a narrative report which is due every six months and is an ideal opportunity for service providers to put forward as one of the key stakeholders put it, ‘the good news stories as well as the issues’. During the interviews with the several key stakeholders, they described how the day programmes, their facilities and staff are routinely audited every two to three years. Although a possible limitation of the auditing process is that the exercise is ‘only ever valid for one point in time’ (the day of the visit), one interviewee indicated that this problem is addressed by the service planning and monitoring that goes on at what could be described as ‘the client level’.

Surveys

While the majority of the reporting and auditing activities are formal and prescribed, there are other methods available to the day programmes to produce evidence documenting and informing the extent to which they meet their external obligations. The day programmes under investigation, for instance, participate routinely in results-based accountability (RBA) surveys to encourage client feedback and to monitor the quality of service delivery. These measures are aimed at both monitoring client outcomes and service improvement and signal a focus and commitment to best practice.

Discussion

The research revealed that effective day programmes comprised five core elements, including activities aimed at improved client functioning, service processes, caregiver benefits, workforce capability and cultural responsiveness. These reflect the participants’ perception of what makes an effective day programme. Evaluating the actual effectiveness of these elements was outside the scope of the study. Measuring the effectiveness may be a useful focus for a future project.

In terms of activities aimed at improved client functioning, it was clear that targeted activities for particular groups of clients were valued. However, the heterogeneity of programs, participants and funding sources creates challenges in defining and measuring participant outcomes of adult day services, with previous studies reaching mixed results (Gaugler & Zarit, 2001). Such flexibility is supported in the literature as increasing service use (Shanley, 2006). This remains a challenge for agencies delivering services to people living with dementia, but it is recommended that continued attention are given to the development of targeted activities. Supposedly, ‘minor’ elements of day programmes such as transport and food, may well be a major aspect for some participants and caregivers (O’Sullivan, 2011). Alongside this core finding, it became clear that one of the core elements of the day programmes was regarded as relief to caregivers. Families continue to be the greatest resource in keeping older people in their homes, but the stress of such care provision can result in a range of well-documented negative consequences, including clinical depression, health problems, social isolation, financial difficulties and mortality (Schulz & Beach, 1999). Even though the primary focus of day care will be on the people living with dementia, the benefit of caregiver relief should not be underestimated. Participants regarded well-trained staff as important. This was also highlighted by Alzheimer’s New Zealand (2010), with key qualities including the ability to build and maintain relationships, and clarity about their duties and expectations to manage challenges. Part of this core element, but also an element in its own right, is the cultural responsiveness of day programmes. In New Zealand, the integration of a bicultural framework could help increase Maori people living with dementia’s use of day programmes (Martin & Paki, 2012).

The research team was unable to locate any significant literature on the advantages or disadvantages of dementia-specific programmes versus general day programmes for all older people. There are multiple studies reporting on the effectiveness of particular interventions for people living with dementia, for their caregivers and for workforce development in this context. However, the utilisation of these studies and related recommendations are not evident in the design of the day programmes under study. Although the preference for dementia-specific programmes in the context of adult day services for older people is not clear, meeting the requirements for an effective day programmes assumes growing trends and directions for targeted interventions with specific populations, including caregivers.

In reviewing the information available on selected day programmes in New Zealand, no reported outcomes for the programmes were identified. None of the programmes offered evidence with regard to the impact or effectiveness of the programmes or any component thereof. Similarly, there was no information on methods employed by these programmes to measure the quality of outcomes of the programmes, other than reference to financial support received and the implied contractual obligations requiring engagement in reporting and auditing processes. It was therefore not possible to do any synthesis on this issue. This does raise questions about the nature and availability of evidence informing decisions regarding the design and implementation of day programmes. It is strongly felt that the results of this study identify useful ways for organisations to detect key elements of effective programmes, which will enable better targeting of resources.

In order to answer our research questions about the perceived effectiveness of day programmes, a mixed methods approach was employed. This allowed for both quantitative and qualitative results, a triangulation of the thematic analysis and enabled the voices of the participants and their carers to be heard. Both a conceptual framework and tools to measure the effect of interventions are lacking. A need exists to better describe and conceptualise individual and programmatic outcomes that can be implemented and measured in practice. RBA frameworks (e.g. Friedman, 2005) can be a useful mechanism to adopt an outcomes-focused reporting framework for the delivery of day programmes for people living with dementia and their caregivers.

Conclusion

The aging population along with government policy to keep people in their homes as long as possible highlights the importance of services for older people, including people living with dementia. The subsequent increasing financial costs highlight the need to ensure services, such as day programmes, are effective and provide good, measurable outcomes. An effective day programme must improve client functioning, provide caregiver benefits, have a capable workforce, be culturally responsive and ensure good service processes. Adopting a RBA framework would enhance outcomes-focused reporting. By recognising what makes a day programme effective, and building this into the design of the programme, the limited resources available can be better targeted to the needs of the population. Although this study focused on people living with dementia, the results are relevant for the design and delivery of all day programmes. We recommend that more day programme research be undertaken that could look at the extent, coverage, intended outcomes and quality measures of day programmes in New Zealand, which was beyond the scope of this study. This research would inform not only future policy and planning within New Zealand for both DHBs and NGOs, but advance our understanding internationally of the effectiveness of day programmes.

Footnotes

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) received no financial support for the research, authorship, and/or publication of this article.

Annie Weir (PhD) is director of Impact Research New Zealand and an Honorary Research Fellow with the School of Critical Studies in Education, Faculty of Education, The University of Auckland, New Zealand. Annie Weir has worked in research and evaluation in New Zealand and the UK for over 20 years and her interests include: healthcare management, quality assurance in higher education, third sector social services provision and building organisational capacity in evaluation and research. Recent investigations into marginalised and vulnerable groups in New Zealand include: early childhood intervention programmes, child and youth wellbeing, social housing, justice, refugees and support for older adults in the community including those living with dementia.

Christa Fouche (PhD) is associate professor in Social Work at the Faculty of Education, The University of Auckland, New Zealand. She is a Research Associate at Impact Research NZ. Her teaching and research expertise centres on workforce development in the social services. She is a registered social worker and has extensive professional experience in the field of community health care delivery. Throughout her professional career, the focus of her work centred on chronic illness and the psychosocial impact of health conditions for various populations in diverse contexts.

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