We conduct independent research and evaluation in the social services, health and education sectors

Dementia Day Programmes Research

Overview What is dementia? Aim Research methods Introduction to photovoice Experiences with photovoice Research findings

What is dementia? As the population ages, the number of people with dementia also grows. Dementia describes a collection of symptoms which are progressive and incurable including memory loss, problems with reasoning and communication skills and a reduced ability to carry out daily activities.

Research aim We aimed to find out what are the elements that make up an effective client-focused day programme for people living with dementia?

Methods International literature review (Australia, UK and USA) Field work in two sites (Hamilton and South Auckland) Document review – organisational documents Clients - structured observations and photovoice Family and significant others – survey and telephone interviews Day programme staff - interviews and online questionnaires Drivers – interviews Stakeholder interviews

What is photovoice? A process by which people can identify, represent, and enhance their community through a specific photographic technique. Using images created and composed by research participants, allows them to capture questions to be asked about not only their understanding of the image but also the context and circumstances of its production.

Why use photovoice?  Photovoice (Wang & Burris, 1997) is a qualitative research method that has been used effectively with vulnerable and marginalized populations. We wanted to give ‘a voice’ to people living with dementia who attended a Day Programme.

 Moyle (2010), the influence of age, extent of cognitive impairment and activity limitation with dementia can impact on the level of participation and should be used with care.  This method might therefore be more effective with early-onset dementia patients, but involvement of the caregiver in the interpretation of photos can be very effective, as discussed by Wiersma (2011).

Using photovoice Photovoice as a data collection method requires clear instructions to participants on the number of photos to be captured during a specified period of time and on the purpose of the images.

Photovoice The participants: Eight clients (person living with dementia) Eight family caregiver(s) Driver (on the day the photovoice exercise took place) Several Support Workers from the day programme (on the day the photovoice exercise took place)

10 photographic situations  At home – prior to going to the Day Programme  Leaving home – being driven to the venue  At the Day programme  Going home – being driven home  At home – after the day programme

Photovoice experiences Capturing a day in the life the person living with dementia was a cooperative exercise. The client had those people they loved and trusted workers share their experiences. Family members could see that having photos of their loved one doing activities during the day gave them insight and opportunity to discuss with them.

Photovoice - moments in time “At the back of the house on the deck by our garden. My wife is having difficulty with the camera.” “I read the paper while I wait for my wife to drive me to Enliven.” “Sanding the shed in preparation for painting. Discussing with other clients about the project.”

Photovoice experiences “I liked the way she got up early and is excited to go. I observed she is not nervous as she used to be going to Enliven. I thought she was happy” “ X is trying on jewellery at the studio we visited today – and she likes what she has chosen.” “X meets the musician who is here to entertain us.” “X arrives home and gives her daughter-in-law a cuddle. Mum at home 20 minutes after Enliven and looks very happy watching rugby league”.

Engagement with activities The photovoice data supported the interview data on the importance of a variety of activities throughout the day to enable clients to engage with others in groups and one-to-one. Activities included:  Physical exercise sessions and walking  Arts and crafts-related activities and music/singing  Cooking/baking and gardening  Individual activities (e.g. reading the newspaper or magazines)  Group-based games (e.g. board games, pétanque, bingo)  Watching DVDs and using the internet/computers  Visits/outings to places of interest and shopping  Group meals  Interaction with animals  Interaction with children  Conversations between participants

What did we learn about photovoice? The clients participated with the help of those closest to them – it was inclusive and supportive. Providing guidelines to participants was essential and supporting them through the process.

What did we learn about photovoice? Thinking about a client’s day and suggesting 10 key situations for photos to be taken made it easier for data analysis. The participants selected the moments to take photos within the 10 situations and they reflected client’s experiences and what the participants thought was important to convey.

Reflecting on the evaluation methodologies The international literature review The document review The participants The fieldwork The report

Researching with vulnerable people The approach to research ‘on’ people – especially those with health and disability concerns is often questioned and advocates for participatory approaches to research increasingly emphasise the importance of research methods that facilitates the involvement of these individuals.

The elements identified as core to effective day programmes:  improved client functioning;  caregiver benefits;  a competent workforce;  and cultural responsiveness.

Thank you Dr Annie Weir, and Dr Richard Griffiths Impact Research NZ Website M