i feel alive

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with “a cuppa and a biscuit” which has worked well .... join in the water activities and the cuppa ..... know, the cup of tea and everything like that and that's all.
“I FEEL ALIVE”

An evaluation of Dementia Canterbury’s community-based activity respite programme

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

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We would like to acknowledge the contribution of  the Rata Trust as principal sponsor of the pilot  the collaborative partner organizations and their staff and volunteers  all the Dementia Canterbury staff who have helped to develop and run the programme, collate reflective records, and collect questionnaire data. Special thanks to Maria Scott-Multani, Shelley Wright, and Beverley Seabridge  the Dementia Canterbury volunteers  the participants and their care-partners  Dr Susan Gee for collating this report

Citation: Gee, S. and Dementia Canterbury (2018). “I feel alive” An evaluation of Dementia Canterbury’s community-based activity respite programme. Christchurch, NZ: Dementia Canterbury.

Address: 314 Worcester Street, Christchurch Postal Address: PO Box 32074, Christchurch 8147 Ph: 0800 444 776 West Coast: 0800 259 226 Email: [email protected] Website: www.dementiacanterbury.org.nz

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Contents Foreword………………………………………………………………………4 At a glance…………………………………………………………………….5 Introduction………………………………………………………………….6 About Dementia Canterbury……………………………….7 Why is it important to support activities?.............8 The pilot programme…………………………………………10 The evaluation……………………………………………………12 The groups…………………………………………………………………..13 Artzheimers……………………………………………………….15 Gardening…………………………………………………….…...18 Next Chapter library groups………….…………….…....21 Water memories……………………………………………….24 McBakers………………………………………………………….27 Life Stories………………………………………………………..30 01 Our Vision, Mission & Values 04 Financial Highlights Court theatre…………………………………………………...33 06 Chairman’s Letter Recent groups…………………………………………………..36 08 Board of Directors Impacts………………………………………………………………..…….38 10 Departments Report For individuals with dementia…………..……………..39 12 Facts & Figures Capital 14 Appeals Global Market For care-partners……………………………………………..44 15 Statistics For community partners and volunteers………….49 16 Events In 2016 Conclusions……………………………………………………..51 18 Future Plan References………………………………………………………………..53 19 Statement of Financial 20 Position Insert LOGO Conclusion 22

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

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Foreword

With or without dementia, meaningful activities and meaningful relationships are at the heart of a positive and enjoyable life.

The core of supporting people living with dementia is enabling person-centred, purposeful, stimulating experiences and activities that offer hope and means to maximize quality of life. With or without dementia, meaningful activities and meaningful relationships are at the heart of a positive and enjoyable life. We are proud to share our positive experience of offering an activity programme that concentrates on providing meaningful community based activities for people living with dementia in normal social settings. Thanks to the wonderful support of Rata Trust we have been able to offer this 2-year pilot program. These groups have become an invaluable component of our aim to support people living with dementia to lead fulfilling lives and break down barriers to enable people living with dementia to participate in and enjoy activities in the community. The programme is supported by research and policy that increasingly endorses the benefits of maintaining and enriching social and physical environments and opportunities for people living with dementia.

This activity program provides another respite option for carers whilst encouraging social involvement and connections. It increases opportunities to challenge stigma and raise awareness in our community about living with dementia. This report provides a snapshot of the groups in 2017. The activities programme has continued to mushroom in growth. Our emphasis on partnership with the community to deliver normalised activities is going from strength to strength and we are seeing these environments embracing the concept of “dementia friendly”. Alongside describing the groups themselves (all of which are based in existing community environments and delivered in partnership with other community providers), we are pleased to share the benefits for those involved – both people with dementia and care partnerss.

Darral Campbell Manager

“I feel alive”: An evaluation of Dementia Canterbury’s community-based activity respite programme

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

at a glance 100%

Initial needs assessment

A range of activity groups at the gallery

discussing literary extracts at a local library

gardening at the botanic and community gardens

water activities at a local pool

getting involved with the arts

creating a life story book at the library

appreciating art

walking with community organisations

baking for families with children receiving medical treatment

of care-partners noticed a difference in the person with dementia

making something DIY at a hardware store

76%

84%

% of people with dementia who wanted to do something but couldn’t over the last week

% of care-partners who felt stressed trying to meet other responsibilities

For care-partners %

%

For people with dementia Enjoyment and feeling normal

I feel alive. Can we do this every week?

Getting out in the community

If I wasn’t doing this I’d be at home climbing the walls

Social connection

It's been very good because of the people …have a good laugh

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

Chapter 1

INTRODUCTION

The context for offering a community-based activity respite programme

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Introduction One the principles of living well set out in the New Zealand Framework for Dementia Care is that people with dementia are supported to “live in their communities with a sense of purpose and confidence” [1]. It recommends services that “engage the

person with dementia in personalised everyday and social activities that are meaningful to that person”. Dementia Canterbury has embarked on a two year pilot of such a service, with an ambitious programme of community-based activity respite groups.

About Dementia Canterbury In the early 1980s there was little public awareness of dementia in New Zealand and few support services were available to people living with dementia and their care partners. This prompted a small group of social workers to form the first ever support group in New Zealand dedicated to helping people support those with dementia. This grew into a federation of 20 regional groups around the country under the umbrella of Alzheimers New Zealand. In 2016 Alzheimers Canterbury left the federation and rebranded as Dementia Canterbury. Dementia Canterbury continues to offer free person-centred services for people diagnosed with a dementia and those that support them. Dementia Canterbury’s aim is support people to lead fulfilling lives after a dementia diagnosis, to raise community awareness and break down barriers associated with all dementia and work towards a dementia-friendly and responsive community, one where people living with dementia feel safe and confident to participate in activities in the community. Left: Celebrating a completed life history book Previous page: The finished product – showing off a handmade bird feeder

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Why is it important to support activities? “Two thirds of people with dementia live at home and we know one of the hardest things after diagnosis is the isolation and inability to do the things they enjoy. By support…they stay in familiar places, doing things they enjoy with the people they love” George McNamara [2] There is widespread acceptance that the opportunity for meaningful activity and social engagement impacts on quality of life and outcomes for people living with dementia [3-6].

Above: Smiles at Water Memories group.

Living with a dementia can involve many challenges for engaging in activities and society. Changes in cognitive abilities, motivation, and communication can make activities fraught with difficulty. People living with dementia can experience negative attitudes and stigma that hinder engagement [3]. For example, a recent survey found that over a third of New Zealanders felt it was better if people with dementia were cared for in a facility or would worry about how someone with dementia might act if they were in public with them [7]. While the universal need for meaningful activity does not change when living with a dementia, the amount of support needed does, both at an individual and societal level. Supporting engagement is the core of a dementia friendly

society, which has been defined as “a cohesive system of support that recognizes the experiences of the person with dementia and provides assistance for the person to remain engaged in everyday life in a meaningful way” [3]. Feeling lonely and isolated from the community is a difficulty for many people with dementia [8, 9]. The negative consequences of loneliness and social isolation are well-established, including being a reason for entry to residential care [10]. Activity groups can be particularly effective in facilitating social interaction as the activity can provide a nonthreatening focus for engagement [11,12], especially if the group member ship is small and consistent. Supported meaningful activities in a group setting can     

override the stress of cognitive impairment elevate mood provide positive manageable stimulation reinforce personal identity and encourage social interactivity [13].

When these activities are located in the community in can further 

 

Increase familiarity, facilitating competence and reminiscence Increase engagement in the wider community and help breakdown stigma [3, 14]

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Meaning in activities

Supporting care-partners

Activities offered are more likely to be engaging and beneficial when they are personalized to be consistent with the interests of the person living with dementia [15,16].

Care-partners play a critical role in supporting people with dementia and enabling them to remain in their own homes. Caring for a loved one with dementia can be rewarding, but also demanding, worrying and exhausting [18, 19].

Alison Phinney and her colleagues talked with people with dementia to better understand what constitutes meaningful activity [17]. Their work suggests that activities can be meaningful in three main ways:   

providing the participants with an experience pleasure and enjoyment fostering a sense of connection and belonging helping maintain a sense of autonomy and personal identity.

Their work also suggests that a familiar social and physical environment promotes involvement and helps provide a sense of continuity.

Care-partners can need support to continue to cope. Respite care offers support by providing an alternate care environment for the person with dementia to enable care-partners to have a break. High quality respite care can be perceived as beneficial to both the person with dementia and the care-partner and is highly valued by carepartners [20-23].

Above: Enjoying Life Stories. A group member and her son working on her book with Shelley from Dementia Canterbury

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

The pilot programme Dementia Canterbury embarked on a 2 year pilot to implement a communitybased programme offering activities that were developed in response to the interests of local people diagnosed with dementia. The service has been designed to both provide respite for the care-partner and meaningful activity for the person with dementia. The objectives of the service are to: 

Provide respite for the care-partners



Help alleviate social isolation for the person with dementia



Provide meaningful activity for people with dementia



To collaborate with existing community based organisations to offer activities for people with dementia, helping to raise community awareness of dementia and normalising the service for people with dementia.

The pilot was supported by funding from the Rata Trust for .7 FTE for coordinator / facilitator roles. Running the groups involves Dementia Canterbury staff, the partner organisations, and considerable volunteer support. At the time the pilot was launched, Dementia Canterbury already had three types of community groups in place: art gallery based art appreciation, library based literary discussion, and Botanic gardens based gardening. A staggered approach was used to introduce a range of new community groups across the pilot with community gardening, pool based water activities, library based life stories, ‘McBakers’, and Court Theatre. The programme continues to expand including community walking groups, guided walks in the Botanic gardens, and a DIY group at Bunnings. Since the pilot some activities are also being replicated in different areas, from DIY in Ashburton to Next Chapter library group in Kaikoura.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme



Where possible part of the structure is a social time at the end, usually accompanied by a hot drink and biscuits.



Groups are coordinated by a Dementia Canterbury staff member, often alongside facilitators from community organizations.



The person with dementia and their care-partners are also able to access a range of other Dementia Canterbury services.

Trained Dementia Canterbury Volunteers are involved in each activity.



For groups with a physical involvement a medical clearance is required.

Partner community organisations have access to training for their staff involved in the groups



The focus is on a stimulating and enjoyable meaningful activity, maximizing opportunities to share opinions and reminiscences.



The coordinators invite the people with dementia to help plan and /or choose tasks, topics etc



Transport for those unable to access the activity through personal means is supported where possible by volunteer transport, group transportation, or access to the Total Mobility scheme.

Characteristics of the groups 









An initial discussion with the person with dementia and family/whanau helps to determine activities that will be a good fit for the person. The client is encouraged to develop a portfolio of activities.

All the groups are held at a venue in the community, rather than at Dementia Canterbury premises. The groups are limited in size, usually up to 8 people, to ensure that each member is involved and has support to engage successfully.



The sessions range in length from one to two hours across the groups.



Involvement in the group is open-ended. The exception is the Life Stories group, which runs as block of 6 weekly sessions.



To foster familiarity the groups have a regular structure or rhythm, although the specific content may vary.





Care partners can attend the groups, sometimes as active participants e.g., for walking or swimming groups, and sometimes as observers e.g., Artzeimers. For care-partners using the groups as respite, feedback is provided about the session.

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Above: Opawa community garden, with plants grown by the gardening group Facing page: A Next Chapter group member discusses memorabilia with a librarian in themed costume

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The evaluation A variety of sources of data have collated for this report. We fully embrace the international catch cry of “no research about us without us”, but we also recognise that formal questionnaires may not be the most appropriate technique for many people with dementia. We therefore used a range of techniques to understand the experience of the people living with dementia.

Initial needs assessment During initial meeting with clients, and their carepartners for those who had one, to determine goals and possible activities of interest, Dementia Canterbury staff invited them to complete needs the assessment questionnaires. People with dementia. Participants were invited to answer some questions about how they have been feeling over the last week.



a focus group with participants



brief ‘pop vox’ interviews of participants at activities



reflections from collaborative partners



structured observation of two activity groups, using the Outcomes-based Observation Tool [27] and the Menorah Park Engagement Scale [28] brief surveys with volunteers



Follow-up After 6-months, a subsample of participants and care-partners were asked to repeat the needs assessment questionnaires. Repeated measures were collated for 27 people with dementia and 21 care-partners.

The 13 item measure of mood from the DemQol [23] was generally conducted verbally as an interview. The scale was completed with 53 people with dementia.

30 care-partners completed a feedback questionnaire about the impact of activity programme and their comments about positive aspects and possible improvements.

Care-partners The support people of individuals living with dementia will be invited to answer questionnaires about the well-being of the person living with dementia, their own levels of stress, and their positive experiences of being a carer. These were adapted from the DemQOL [23], Zarit Burden Interview [24] Caregivers’ Stress Scales [25], and COPE index [26]. The measures were generally selfcompleted. Questionnaires from 32 caregivers were collected.

Ethics and confidentiality

Field data This included 

Reflective records completed by Dementia Canterbury staff

As this was a service evaluation, no formal ethical approval was required. All the people with dementia signed a simple assent form for the formal data gathering, and the care-partners gave signed informed consent. The quotes included this report have been anonymised, and the names used are pseudonyms (marked by an asterisk), except where the person has explicitly given extra content under their own name. Photos have been taken with permission to be used by Dementia Canterbury. This permission does not extend to use for other purposes, and we ask that this is respected by readers.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Summary To provide respite and meaningful activities for people living with dementia, Dementia Canterbury piloted a programme of activities to help people living with dementia to continue to engage in activities they enjoy and lead fulfilling lives, in collaboration with local existing community services. The aim for the person living with dementia is to provide an engaging an enjoyable activity ‘in the moment’, and though the provision of these opportunities on a regular basis to improve their overall well-being. The aim for the care-partner is to reduce the stress associated with their caring role and improve quality of life.

This evaluation project was initiated to enable Dementia Canterbury to document evidence of these outcomes. It also aims to provide insights to guide the development and improvements of the programme into the future.

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

Chapter 2

THE GROUPS

The range of activity groups offered

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

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Artzheimers I love the artwork. I’m no good at it myself but I really appreciate it. Really see something in artwork. I made up my own little stories for what I think it’s about. That’s what it does for me. It makes the old brain think and that’s what I need.” - Participant - Phil Jackson Art appreciation can provide stimulation and socialisation for people from all walks of life and abilities. Art offers a powerful mechanism for evoking memories, stimulating emotions, and encouraging people to share their thoughts and ideas in a non threatening environment [29]. People living with dementia maintain their consistent preferences for particular art styles [30], and the ability to express their opinions can provide not only a stimulating experience but also a reinforcement of their personal identity [31, 32].

Aims

About the group



To provide opportunity for reminiscence and opinion based discussion of art within the gallery environment.



To increase opportunities for meaningful social engagement and interaction in a community setting of value for individuals who have an interest and love of art.



To provide training and support for the art gallery to enable them to outreach to people living with dementia

Artzheimers meets at the Christchurch Public Art Gallery fortnightly for an hour. An art gallery volunteer guide leads the group to specific pieces of art. While the group sits, the guide tells them about the artist before encouraging discussion and reminiscence. At the end of the session, group members are given a printed copy of the art to take home with them. Running the group involves collaboration between Christchurch Art Gallery and Dementia Canterbury volunteers and staff. Carers are welcome to attend, but are asked to be silent observers during the discussion. Dementia Canterbury provides training for the guides to complement their knowledge about the art.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

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What we see With the re-opening of the Art Gallery participants are experiencing the benefits of viewing original art pieces, enjoying the ambience of the art gallery and being a part of the community. One of the strengths of Artzheimers is the success of the reminiscence and opinion-based discussion in encouraging people to express themselves. The participants have a very enjoyable experience, but moreover for some it provides a boost to confidence that extends beyond the group. One example is a gentleman who was inspired to take up painting again through his experiences with the group. Care partners and support people are encouraged to attend. Feedback from care partners suggests that coming to Artzheimers together is an

opportunity to share an experience and step out of the role of ‘carer’ and back into the the role of partner, family member, or friend. This group provides a safe place for entering Dementia Canterbury’s service for people who are newly diagnosed and /or higher functioning. As a very ‘normal’ activity, Artzheimers can sometimes serve to reduce hesitancy in participating in other community based activities. In the future there could be benefit in starting further groups to provide welcoming environments for people who are further along in their dementia journey.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

As the group begins to arrive for a session, we see a general level of excited anticipation among the group. While talking about an artwork members of the group tap into their own memories, knowledge and experience to make comments. Some recall topics and artworks from previous sessions. We have definitely seen an increased confidence now with which members comment and contribute thoughts about the works of the day. Some comments are highly insightful and pertinent... There is always a lot of laughter and we now notice a reluctance to end the session. It is as if dementia is no longer to the fore. The programme is mutually beneficial for all parties because it provides social interaction around a subject of interest in a structured but flexible, purposeful and enjoyable environment. The feedback has always been very positive and it is a collaboration the gallery is very proud to continue. Lana Coles, Christchurch Art Gallery public project and education team leader.

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

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Gardening The environment is beautiful, I like gardening, I like [to] tidy, you can’t beat it, I love the history of it. It’s refreshing, I love it”. - Participant

Gardening has received attention as a beneficial age-appropriate activity that has been enjoyed by many at different stages in life. As a familiar activity gardening can often stimulate reminiscence. It also provides a range of sensory stimulation and access to a natural outdoor environment. Gardening can provide a chance to nurture and to give and be useful for people who may increasingly find themselves as the recipients of care.[33]

Aims 

  



To provide an opportunity to work in the therapeutic garden environment, and be outdoors To provide opportunity to meet other people managing dementia To provide opportunity to make a meaningful contribution. To reinforce and re-engage skills in gardening, fine motor skills, physical exercise. To provide opportunity to engage in an activity independent of their care partner.

About the group The original gardening group has been running since 2014 in partnership with the Christchurch Botanic Gardens. A second gardening group was initiated at the Opawa Commnity gardens in October 2016. Both groups meet monthly for an hour and a half. Running the groups involves a facilitator from the garden, a staff member from Dementia Canterbury, and sufficient volunteers to support all the group members to participate fully and to be safe. Gardening activities are seasonal and involve a range of activities such as deadheading roses, planting, watering, raking leaves and general care.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

What we see The Gardening Groups are a valuable opportunity for people who enjoy being physically active and appreciate doing something for the ‘greater good’. At the conclusion of each group there is a real sense of satisfaction at the visible difference achieved together. Group members often express their delight at the beauty of the gardens and talk about the feeling of “doing a good job”. Several males and people with younger onset dementia attend the group as the physicality and job-like nature of it seems to appeal. The social aspect of the group is also a key component of its success and the act of working alongside each other generates a sense of camaraderie. The Botanic Gardens is a rich environment, unaffected by the earthquakes, and a repository of memories for many. The opportunity to give something back to this iconic treasure of

Christchurch has great appeal. This might range from raking leaves outside to bagging bulbs for the shop in the greenhouse of the visitor’s centre. The Opawa Garden group meets at an established community garden, complete with shady trees, chickens, and bees. The collective garden setting enables participants to choose tasks they wish to engage in, with adaptation of the task by the facilitators as required. One participant said “it’s a little piece of heaven. I can do what I like here”. She now attends social gatherings at the garden with people from her neighbourhood. The group finishes with “a cuppa and a biscuit” which has worked well to bring the group together socially. People are able to take produce from the garden, reinforcing the value and satisfaction of their work and prompting conversations with their care-partner. On rainy days the group has been welcomed into the neighbouring church.

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

Mick* says that when he was diagnosed with dementia it felt like family and friends placed him in a cocoon of protection. He no longer felt able to do things the way he once did. He describes the gardening group as reopening up his world.

Right: Potting seedlings at Opawa community garden

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

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Next Chapter library groups [I enjoyed] the trip down memory lane recalling when we were young - Participant

Reminiscence involves sharing life experiences, stories and memories. Recalling these types of memories is often a strength that remains even as short term memory becomes problematic. Talking about the past in a supportive environment can be an opportunity to engage in an activity that is based on maintained strengths, to talk and give rather than receive and listen, and to relive happy memories and pleasant times. For people with dementia tapping into all the sense can help to trigger memories. Looking at a picture, listening to a poem, touching an object, or even a smell or taste, can all take someone back in time [35,36]. The Next Chapter group draws on the many literary, photographic, and digital resources of the library.

Aims 

To provide cognitive stimulation and engagement with literature.



To provide opportunity for reminiscence, discussion, and positive social interactions within a library environment.



To provide thematic sensory stimulation opportunities which aid in triggering positive memories.



To provide opportunity for reinforcement and maintenance of meaningful roles, interests and routines.

About the group This group is run at both the South Library and Riccarton Library. Each group meets fortnightly and is facilitated by the librarians, with support from an Alzheimers Canterbury staff member present. The librarians set a theme for the group such as communication, war time, seasons, or transport. As well as literary readings they provide a range of audio, visual, tactile resources which help to form the basis of discussion and reminiscence related to the theme. The group enjoys refreshments together at the completion of the activity. In July 2017 a Next Chapter group was launched at the Kaikoura library.

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

What we see The sessions are organized thematically around such subjects as Anzac day, spring, dance halls, the beach etc. Literature related to the theme, such as poems, short stories and diaries, are read by the librarian and the group to spark discussion and recollections. Archival resources and other props related to the theme are also utilized to make a very multi-sensory stimuli, including items from the libraries’ memory boxes and clips and images played on-screen. The focus is on gathering together people at a similar stage of dementia, presenting them with a range of evocative library and digital resources, in a stress-free environment that foster discussion, memories, and humour. The library staff provided wonderful props to trigger memories in reminiscence. For example, one theme was ‘At home during the War’. The group talked about the women and children at home, food

rationing, and the home guard. Video clips from Youtube were used, and photographs were handed around. This prompted a lot of animated conversation and reminiscence. One of the librarians wore a genuine vintage 1940’s dress – this provoked lively discussion that segued into memories about cars and learning to drive. The librarians are adept at using well-chosen openended questions to spark discussion, reminiscence, and cognitive stimulation. For the participants it is “very enjoyable talking about the olden days”, or as another participant exclaimed - “I loved it, absolutely loved the reminiscing. It was fun!”

Above: Props for a summer-themed session

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Christchurch City Libraries run three “Next Chapter” library programmes in partnership with Dementia Canterbury. Librarian Kim Slack says that the first programme was developed in 2014 to provide a fun and engaging story-based service for those living with dementia disease in Christchurch. The initiative has gone from strength to strength: “we have introduced two more classes that are based in the library. The success is growing with relationships forming with Waimakariri and Kaikoura Libraries to establish similar programmes.” Kim sees benefits not only for the participants but also for staff, including positive interactions, a better understanding of dementia, and recognising the importance of accessibility. On a personal note, Kim says she loves “the involvement and the opportunity to connect and for people to share their stories. It truly is such a privilege.”

Right: Librarians dressed up for a Next Chapter session

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Water Memories When I heard about this group I thought Oh my gosh, that’s for me. I am a swimmer, it feels so good to get back into the water... So many happy memories it brings back for me. -

Participant

Many people living with a dementia have positive memories of swimming and water-based activities that can be rekindled by pleasure-based water activities. Water memories swimming clubs were developed in Australia to combine the benefits of a fun social activity that evokes happy memories, with the positive benefits of physical exercise for people living with dementia [34].

Aims 

To rekindle positive memories of swimming and water activities



To actively engage in water based activities



To provide the opportunity for positive social interactions



To provide opportunities for therapeutic sensory stimulation (e.g., cool pool, hot pool / spa)

About the group The first Dementia Canterbury Water Memories Group commenced in October 2015. Collaborating with two Aqua Centres, Water Memories groups are offered both in North Canterbury (Dudley Complex Rangiora) and Christchurch City (Graham Condon Aqua Centre Papanui). Each group is offered on a monthly basis and includes options of aqua based exercises with an instructor, lane swimming, and general fun. Participants also enjoy the opportunity to gather together for a coffee at the end of each session.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

What we see The swimming groups are a favourite with staff. Participants are more animated during and after their time in the water. This was especially apparent for one participant with an early onset dementia which was progressing very rapidly. Out of the water she initiated little movement or conversation, but in the water she came alive - singing, laughing, and diving. She was able to interact with and even embrace staff. It was a remarkable transformation for the time she was in the water, and for a short time afterwards. Another participant commented several times that as soon as he was in the water he no longer felt that old. As well as volunteer helpers, some care-partners join in the water activities and the cuppa afterwards. This has been a very rewarding

experience, with one of the care-partners saying “In the water my husband comes back to me a little, I can’t tell you what this means to us”. The initial instructor for the structured part of the session, was, in one participant’s view, “very good like an Olympic person or something…[but] everyone was tired... we were a bit behind it”. A care-partner has now taken on the role of instructor and “no one was getting flustered, worried, or thinking I can’t keep up with them”. The shared van ride has proved to be part of the social experience for those taking it. It provides an opportunity for laughter and chatter. One helper said “they are hard case these guys, you wouldn’t know any of the troubles they have when you see them in the van”.

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

Water was the catalyst for change for Graham as he struggled at times with his occipital vascular dementia and all its ongoing limitations. At first he slowly responded to directions from the instructor, until his enjoyment overcame his lack of confidence as time went by during the months that followed. There is often a great sense of loss when family see the sometimes crippling mental deterioration of their loved one, that is why such positive group activity which brings some semblance of normality is so beneficial to all concerned. I watched my husband and other participants happily multitasking without effort in the pool when the sense of fun overcame the would-be challenges in other circumstances. This was a special activity where his limitations were forgotten and success became the reward during a relaxing fun time for all of us! For me, personally , I made a choice to stay and enter in the pool not only in support for everyone concerned, but to show support in our belief that this activity creates a great sense of achievement and well being in an environment where we all have things in common, like cold water, etc. I noticed the chatter and social interaction increased as friendships grew while barriers were broken down. My husband said that he also enjoyed the social interaction between us all, it helped to foster positive memories about living with Alzheimers. This was the beginning of lasting friendships I now value more than ever now that Graham is no longer with us. - Allison Campbell

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

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McBakers I enjoyed going out to baking group…it was an experience... good to get out of the house. [I] reminisced about not knowing how to cook! Participant

According to National data, the amount of time spent volunteering peaks in later life [37]. This likely reflects not only the availability of time but also generations of people who have been brought up to value “good citizenship”. The most commonly reported benefit of volunteering for older people is experiencing satisfaction [38]. A sense of purpose and self-worth are important components of quality of life, including for people with dementia [39], who are often positioned as recipients of help.

Aims 

  

To provide opportunity for participants to give back to the community in a voluntary capacity – reinforcing their sense of personal value and worth. To engage in meaningful activity which aids in maintaining function and self -worth. To form and maintain positive social connections with people who share common interests. To increase opportunities for social engagement and interaction in a community setting

About the group The McBakers Group commenced in November 2015. The group operates in the kitchen /dining area at Ronald McDonald House, to prepare baking for sick children and their families staying at the facility. The group members are involved in the planning and decision making around food preparation, in addition to actively contributing to the baking process. A Dementia Canterbury staff member and volunteer/s assist the members of the group to undertake a task of their choosing. Above: Food prepared by McBakers

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

What we see Collaboration with Ronald McDonald House meant positive benefits for both parties. As volunteer bakers, the group participants have the opportunity to experience the benefits of feeling needed and valued, in addition to enjoying being part of a social group. In turn the children and families at Ronald McDonald House benefit from snacks being provided on a monthly basis. Clients often speak of the value of the baking for the sick children. They enjoy interacting with the children, sometimes allowing the children tasters.

Within the group, clients formed connections and friendships with each other.

Some people spoke of enjoying baking again after years of not doing it. One client said that she really enjoyed making herself a cup of coffee in the group, as she was no longer allowed to do this at home. Some clients have re-gained confidence in cooking ability and repeat the recipe at home.

The kitchen facility and the open plan dining and Ronald McDonald House has been conducive to the group being able to function efficiently as a whole. Staff at the facility are very welcoming and appreciative, and over they say they have gained more of an understanding of dementia through the contact with the group.

One helper to every 2-3 clients ensures that everyone remains involved in useful tasks People with all levels of baking ability could be accommodated within the group. Some clients are dropped to the office by carers and travel in as a group with coordinators or volunteers , as parking can be difficult in the city for care-partners to drop off and pick up participants.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Claire* has early onset dementia. She had declined all formal day programme options because she felt too young to be part of their services. She was willing to give McBakers a try however, and loves it: “Mc Bakers is the best...it is lovely there [and the] people running the show … have some good giggles…so nice to be out with younger people…[we] didn’t know each other now we are good friends.” On one occasion while the group was baking they met two four-year-old twins, one of whom was undergoing chemo. “Seeing the twins…put things in perspective…a bit of a wake up”. The coordinator has noted how purposeful Claire seems to feel for the two hours while the group bakes. Previous page: Busy baking This page: Healthy snacks

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

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Life Story group I remember more when I look at the photos. The memories all flood back. - Participant

Life Story work involves the person with dementia being supported to gather and review their past life and build a personal life story or biography. The process helps people share their unique and rich stories and positively enhance their sense of identity. It provides opportunities and support for individuals to individuals celebrate their life and reinforce and communicate their identity This can be a way It can help those around them to connect, understand them as a person, and develop closer relationships. [40-42]

Aims 

To provide opportunity for the gathering of a detailed Life History.



To provide opportunity for positive social interactions and build confidence in utilizing facilities within a library.



To provide thematic sensory stimulating opportunities to help trigger positive memories and support an enriched sense of wellbeing and self -worth.



To provide opportunity for reinforcement and maintenance of meaningful roles, interests, and routines

About the group Building on the success of the Next Chapter Group, staff from Christchurch City Libraries collaborated with Dementia Canterbury to start the first Life Story Group March 2016. This group is held weekly for six weeks. Library staff facilitate discussions at the beginning of the session to introduce a general theme or stage of life. One to one support is provided to facilitate conversation, support storytelling, and assist structuring stories and gathering of data into Life Story document. At the end of each session participants gather to share stories. .

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

What we see

reluctant for it to end.

The Life Story groups operate with a very successful partnership between Library staff, volunteers and care-partners. Each participant is paired with a support person to help gather the stories. Photos are scanned and added to the document. At the end of the 6 weeks a booklet containing an illustrated version of your “life story” is presented to each participant.

Another client said that his family would learn about him from his story: “This will give me something to show the family. I think it will bring us closer. There will be some things they will learn about me, some things they did not know”.

The more frequent weekly sessions have helped the group members to bond and become familiar with the facility and the activity. The group discussions at the beginning of each session have worked well to help orientate clients to the life stage being covered. The group discussions at the end of each session encouraged the sharing of stories and connections. One participant shared with excitement that “It’s lovely to be able to remember all of this. I feel alive again. Can we do it every week?”. Several clients were

To create the Life Story was often a deeply meaningful experience: “It meant a heck of a lot to me to attend the Life Stories Project. It helped bring back memories from my past, still does. It rekindled memories about things and people I had forgotten about”. The one on one helper to story teller ratio is essential to this group. Close alliances are formed and volunteers and family members find it an incredibly rewarding .One care-partner reported it was the most valuable experience her husband and her had done together during their retirement. A daughter who was helping her Mum with Life Stories said “this is one of the most important things I’ve done with my mum…It’s fabulous”. Volunteers who take part in the Life Story Project speak of being privileged to be involved.

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

This is the third time I have volunteered at Life Stories and feel very privileged to hear stories and be able to record them. .. I am working with Jack* this time and I can't type quick enough to keep up with his story telling. He is animated, happy and talks fast so we can get everything down and in the time. The catch-up at the end of each session I think is invaluable. A few weeks ago different ones were telling highlights of their morning and then Dave* stood up and very sincerely said how much he looked forward to a Friday mornings and how he appreciated all the help he was being given to get his memories down. It brought tears to my eyes. - Dawn, volunteer Right: A participant with a precious photo

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Court theatre The theatre group especially … he keeps talking about how good it was and it makes him happier - Care-partner

The creative, imaginative, and emotional parts of a person often remain relatively strong even when the effects of dementia are apparent in other areas [13]. However attending the theatre with the potential for intolerant staff and patrons and crowds can be a confusing and stressful prospect that tends to be avoided [2]. The Court Theatre works in partnership with Dementia Canterbury to deliv er a targeted theatre and story-telling programme for people living with dementia. This provides a very rich experience drawing on the benefits of artistic stimulation, life story work, and intergenerational connections.

Aims

About the group



Performances (5 times a year): A member of staff from the Court Theatre and from Dementia Canterbury meets the group and leads them through to their seats for the play. Verbatim (twice a year). A group of young actors and a staff member from the Court Theatre work alongside the participants to produce a performance of Life Stories. Costume and Backstage Tour (twice a year) These tours provide an opportunity for a behind the scenes experience with Court Theatre staff.

   

Increased opportunity for meaningful social engagement and interaction in a community setting of value for individuals Providing carers with the option of sharing the experience Opportunity to engage in inter –generational work with youth members of the Court Theatre. Creating a Dementia Friendly environment within the Court Theatre to enable increased accessibility Increasing community awareness of the experience of people living with dementia to reduce stigma and strengthen relationships.

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What we see The Court Theatre group is a collaboration between Dementia Canterbury and the Christchurch Court Theatre and has been supported by a grant from the Christchurch City Council’s Creative Communities Scheme. Performances: By the end of the trip to the performance there is a great sense of camaraderie with increased interaction. It was clearly visible that the participants and their care-partners enjoyed the session, with much laughter from the lively group. The participants were keen to sign up for the next performance. Verbatim: Participants meet with the youth actors group and tell anecdotes and stories from their lives. This proved to be a fabulous opportunity for inter- generational sharing. The young actors, coached by Court Theatre staff then produced a polished professional performance of the material. The stories were re-enacted using word for word transcripts, with the aid of imagery and music

overlays. The participants were still making positive comments weeks later. Costume and Backstage Tour: The enthusiastic and dynamic Court Theatre staff provide a back stage experience. On one tour the costume team talked about costume development for recent shows with scrapbooks, photos, and programmes. The participants looked at and tried on costumes. They were invited to design and decorate sunhats with flowers, ribbons, butterflies, which was an animated activity. On another tour they visited the pops department and dressing rooms, finishing with a grand finale as people tried out their dramatic “stage entrances”. Inviting care partners to be part of this group enabled them to step out of the role of carer, into the role of partner and enjoy the social and cultural aspects of the group within a community setting.

Above: Off to a show at the Court Theatre Previous page: Canterbury youth theatre verbatim

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Working with the Court Theatre Youth Group was terrific. The two young lads who interviewed me asked some searching questions. It helped me, it helped them. I felt proud to see them tell some of my stories, and for one of them to say “wish you were one of my history teachers”. Young actors listening to stories from a participant

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

Recent groups To other people who might be in my shoes I’d say ‘Don’t be frightened. Open your mind to other things that you can do’. - Participant

The range of groups offered by Dementia Canterbury in collaboration with community partners continues to grow. Several new groups have been added to the established programme after the pilot period.

Botanic garden guided walks

Avebury walking group

In October 2017 a guided walk group at the Botanic gardens started. This has proved to be very popular, with a substantial wait list. The availability of easy access parking, smooth pathways, and free wheelchairs and electric scooters at the gardens opens up accessibility for clients or carers with mobility issues. The group is hosted by an experienced and knowledgeable guide at the Botanic Gardens who shares stories, facts and observations about the garden and the flora and fauna. The group has become very interactive and intellectually stimulating with participants sharing knowledge.

Since September 2017, a walking group meets at Avebury House in Richmond, run by Avebury Community Trust. The house itself is a historic homestead and gardens owned by the council. The group strolls around the gardens and walks by the Avon River and finishes with a warming cuppa in the homestead.

Above: Finished products at Bunnings DIY

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

DIY at Bunnings In October 2017 the fortnightly “DIY at Bunnings” group was launched. This is a new partnership between Dementia Canterbury, Bunnings (Marshland Road) and Linwood Men’s Shedz. In the first session eight enthusiastic men and helpers set too with drills, saws and screws, and within an hour and half they all had planter boxes to take home. Some had skills from years in the building trade and clearly enjoyed the opportunity to be back using tools again. Others were able to benefit from assistance from staff or from their more experienced group attendees to produce something useful. There is much enthusiasm in this group, with many future projects planned.

Avebury House Garden A second community garden group began in October 2017. The group meets monthly at Avebury House where a group of volunteers and staff are developing a community edible garden in some of the red zone land neighbouring the historic homestead. The participants are involved in a range of tasks from laying bark pathways, to putting pea straw around plants, to watering and harvesting produce. The group values the opportunity to be serve the community and help the post-quake regeneration. This was especially important to one participant who was finding it difficult to adjust to

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the new replacement home he moved to after the quakes.

Artscape In November 2017 Dementia Canterbury partnered with Scape, to hold a creative workshop based upon the public artwork around Christchurch. The participants created botanical prints. Some participants have proudly framed and hung these on display at home. There are plans to offer workshops and opportunities for art appreciation in the coming Scape season in 2018.

Art making In early 2018 a new collaboration between Dementia Canterbury and the Christchurch Art Gallery will be launched. This will be a “creative making” group in the purpose built workroom at the Christchurch Art Gallery. This will be led by art therapists from the gallery and dementia Canterbury twice a month.

Expansions The models of successful established groups are being expanded to regional communities. The Next Chapter group has expanded to Kaikoura and Kaiapoi. A gardening group will begin at Fyffe House in Kaikoura in early 2018. There are plans to expand Water Memories to Westport and Bunnings DIY to Ashburton.

Above: Ready for walking at Avebury House

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

I decided that the only way I was going to gain knowledge on this involvement was to join some of the activity groups. The first activity I joined was the Gardening group. …My fellow colleagues and I were ushered to a very overgrown area in the Botanical Gardens, provided with spades, trowels, gloves and set to work. It was not easy work but I was so impressed how everyone ”rolled up their sleeves” and worked tirelessly to complete the task we had been given. When we finished, we all agreed it was a job well done... My next outing was Artzheimers group… The enthusiastic and knowledgeable guide from the Christchurch Art Gallery presented a selection of 34 paintings and the group sat around and shared individual thoughts on what we individually “saw” in the painting. I was totally amazed how insightful members of our group were. .. My final outing was “McBakers” at Ronald McDonald House. From the minute I sat down I

could see that I was surrounded by a number of expert bakers. Of course this was balanced by some who were enthusiastic but not so expert but happy to play a supportive role, which they did so well. There was much laughter and sharing of personal experiences as we measured, melted and mixed and by the end of the morning the array of “goodies” we had made for those people staying in the house was impressive... What did I learn from joining these three community groups? I learnt how important the involvement and camaraderie is for those who attend. I learnt how valuable this interaction with the community is for raising dementia awareness. I personally learnt how to be a better gardener, art critic and baker – all in the company of such amazing people.” Wendy Fleming, Patron of Dementia Canterbury

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Chapter 3

IMPACTSS S The benefits of the activity groups for participants, carepartners, and volunteers

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Impacts for the individuals with dementia Engagement in meaningful activity can provide in the moment pleasure that can be seen in behaviours like laughter and smiling, engagement, alertness or leaning forward to listen, sharing conversation and offering opinions. These in the moment experiences can be a reprieve from the stress and frustration of the challenges of living with dementia [6]. Across 15 short structured observations in two activity groups there was support for the groups providing positive in the moment experiences. After an initial opening period which primarily involved passive engagement (e.g. paying attention but just watching or listening), the participants in every observation were actively engaged and showed in the moment pleasure.

54% Irritable

Fed up

65%

The structured observation of activity groups found that each participant observed: 

were involved in constructive engagement for the majority of the time



showed sustained attention



were content or showed positive pleasure



were observed to smile

The participants, care-partners, and coordinators all talked about the enjoyment and laughter of the groups and loving the experience.

%

Things they want to do but can’t

76%

Initial needs assessment: % of people with dementia experiencing issue at least sometimes over the last week

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Continuity Atchley (1989) emphasized the importance of continuity in adapting to ageing [43]. This can be threatened by dementia, as one care-partner described “there is a great deal of grief associated with the loss of the person as they used to be …”. As dementia progresses and familiar activities can be more challenging, the support provided by the group help participants to maintain familiar activities and interests and reconnect with the life they have lived. Participants talked about being able to do things they were “already interested in” and things they “used to like and do”

Above: Enjoying swimming



My husband and I used to go to the theatre …generally seeing what they were doing in the productions, the different sets. I felt connected to my time as a teenage going on to the stage. (Participant)



One participant described getting back in the water as “like being home” (Participant)



I feel great when [she] is in an activity with Dementia Canterbury. It…allows [her] to continue activity which she used to do before a diagnosis. (Care-partner)



I like to see [her] happy and doing things she can no longer do at home . . . [she] told me she made a pizza. I thought she was joking, but she was so chuffed. (Care-partner)

The participants and care-partners talked about feeling “comfortable”, and “normal” through doing “normal things” in a setting where living with dementia was a shared experience rather than a mark of difference. “

talking to people in the same boat” (participant)



And if I had not come here I would not have …realised there are other people so special like me who forget things too.



There is often a great sense of loss when family see the sometimes crippling mental deterioration of their loved one, that is why such positive group activity which brings some semblance of normality is so beneficial to all concerned (Carepartner)



Dad won’t go to any daycare programmes but he loves these groups. We would be lost without them. (Care-partner)

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

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Getting out The world can narrow for people with dementia, and life can feel limited to within the walls of the home. The activity groups offered the participants a way to expand their world and be out in the wider community: “

It’s good to get out of the house (Participant)



If I wasn’t doing this I’d be sitting at home climbing the walls (Participant)



It allows [her] to link up with others, in a community setting. Socialising with others is great for [her] (Care partner)



He seems to enjoy going, meeting people, and doing something … Joining in a group. Getting out and about with a group of people. (Care partner)

Something to talk about This expanded world was reflected in having something to talk about to care partners: “

He appears contented when I have returned home from work and is able to talk to me about what he has done…[He] is brighter when I get home and able to chat about what he has been up to (Care partner)



She does other things and meets other people….Other things to talk about (Care partner)

Something to look forward to The activity groups offered a sense of purpose and anticipation, with some care-partners noting that people would get up and ready on activity days: “

Something to look forward to (Participant)



I feel like I’ve got a job (Participant)



It gave [her] and I a purpose to get up and do something. Kept us engaged (Care-partner)



It gives [her] an activity to look forward to and to meet up with people she has got to know (Care-partner)

Above: A young actor listening to life stories from a participant at the Court Theatre Verbatim.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

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2

Social connection People with dementia have an increased risk of isolation. Familiar activities can be put aside as the challenges increase. Friends and sometimes family may distance themselves from the person or couple living with dementia. Conversation can become more difficult as dementia progresses: short term memory loss, word finding difficulties and trouble with concentration can all complicate communication. It can be more enjoyable and less stressful to socialise in contexts such where the focus is on sharing an activity or reminiscence [44]. The activity groups can be seen as providing an affirming environment that made it easy to be with and socialize with like others [45]. The participants talked about “meeting people”, of “strangers becoming friends”, and “not [feeling] isolated”. The care-partners too talked of the socialization and laughter. “

It's been very good because of the people I know and we just gel together…... and laugh together have a good laugh, you know, the cup of tea and everything like that and that’s all part of it (Participant)



I know she enjoys the socialisation and is happy, bubbly, and jovial while with others in an activity group (Care partner)

Confidence People with dementia may experience many frustrations and failures as the changes in their brain make everyday activities challenging and difficult [44]. The activity groups could provide a boost to self esteem and confidence: “

I used to bake a lot. This is the only time I get to do it now. If I had a recipe I could do it at home now (Participant)



You bring out quite a lot. A lot of them for a start off are frightened…that just brings them out (Participant)



seeing the enjoyment on his face, seeing the confidence.. . . it’s a time where we he can forget his disability. It’s a place where he cannot fail. (Care partner)



[He] loves the days he has been swimming. He feels good about himself and although he repeats himself a lot he is positive after attending (Care partner)

44% Lonely

Nor at all or a little confident

Not at all or a little full of energy

43%

79%

Initial needs assessment: % of participants reporting issue over last week

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

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Other differences noted by care-partners

Mood

Physical benefits

Some of the care-partners noted a short lift in happiness and animation when the participant returned home,

Care-partners valued the “exercise” and keeping opportunity to keep “physically active” that some of the groups provided. This sometimes helped the participant sleep better:



[He] is brighter when I get home and able to chat about what he has been up to



She may only be able to give me "the bones" of what she has done, but she always says that she enjoyed herself and seems more animated for a short time once home again

For others the lift was more generalized “

[It} helps with [his] general mood which helps with family life as he's more settled. He really enjoys the social aspect and talks about his group in a real positive way. It makes his mood much lighter and gives him a sense of purpose



[He] seems more settled and connected…he keeps talking about how good it was and it makes him happier



he sleeps well always after attending



He loves this outing and will talk about it when I get home. His sleep pattern is always better after attending the group

Delaying care Two of the care-partners said that they felt the activity groups helped the person with dementia to stay in their own home for longer than they otherwise would have: “ It helps him stay pain free, more relaxed so our time is better together. Less pain definitely. Kept [him] at home longer before needing care “

100%

I always felt too far away to be able to support [him] fully I was just an ear at the end of the phone. Keeping [him] involved in the activity group, I think contributed to him remaining in his own home for longer.

All of the care partners agreed that they noticed a difference in the participant and that the groups were good for the person with dementia.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

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Impacts for care-partners Life can undeniably be tough when living with dementia or supporting someone who has dementia. Exhaustion, uncertainty, loss and frustration are all part of the mix, but with enough support so too are love, humour, and discovery (Dementia Canterbury, 2015).

83% Not enough time for self

The initial needs assessment found that of the 34 carerpartners:

100%

felt that they had grown as a person in at least some way

100%

felt they were more aware of their strengths at least sometimes

100%

felt that being a care partner was worthwhile at least sometimes

100%

reported some feelings of stress

Many of the most commonly feelings of stress reported by the carepartner can be seen as relating to the difficulty of balancing their caring role with other the time demands: time for themselves, their other responsibilities, and their social life. Almost three quarters of care-partners perceived the respite programme as reducing their stress after 6 months.

%

%

84% Stressed trying to meet other responsibilities

Social life suffers

74%

Initial needs assessment: % of care-partners reporting issue at least sometimes

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

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2

A break There was a strong theme for caregivers to appreciate the time when the person living with dementia attended the group without the caregiver as “a break”, “free time” or ”time alone” when they could “do their own thing “ and “get things done”. This was a chance to balance their time and competing demands. For example: “

I enjoyed my free time while [she] was in the group as it gives me a chance to get things done (e.g., shopping etc).



It gives me some time alone . . . It gives me a chance to think more about other family members, friends etc, and to get things done around home without worrying [her].

Safe hands

76% Lost control of life

Uncertain about what to do with relative

80%

The care-partners were positive about the ”fantastic”, “amazing”, and “inspiring” group leaders and the experience they provided. “

The lovely friendly, relaxing atmosphere is great. It is reassuring for me to know that [she] is in a safe hands while in an activity group (and without me).

Particularly for care partners who were in full-time work, knowing their loved one had the positive experience of the activity groups could relieve worry about their loved ones engagement: “

It makes me happy to know he is doing something he loves, with others that enjoy it too. He is well supported, and transported home. I am still in full time employment so it has been of huge benefit to know that he is out socialising with friends (the group) and keeping fit and not at home.



I am still working so it gives [him] an opportunity to join in with others. ..It is good for me to know that [he] is doing something physical or creative, I feel less pressured.

Feel should be doing more for relative

80%

Initial needs assessment: % of care-partners reporting issue at least sometimes

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Quality time For care partners who joined in activities alongside the person with dementia experience the groups can be a comfortable, engaging, and joyful experience outside of daily routine. The groups can provide a special opportunity for people to have meaningful and interesting experience together with the person with dementia. “



It gave [her] and I a purpose to get up and do something. Kept us engaged …I think it was beneficial as it allowed us time together doing something we would not necessarily do together. I enjoy the activity we can all share as a group. Something normal. I know that we carers enjoy the normal activity of fun and physical exercise and stimulation also.

The groups offered a chance for positive social

interactions for the care-partners too: “

I enjoy the social aspects and getting a chance to talk with social worker.



We both liked the cup of tea in the group at the end of swimming.

The care-partners values the chance to be in a group with others who were in the same boat: “

It gave us an opportunity to stay involved with others suffering from the illness.



I’m exhausted trying to get people to … understand my husband’s illness. It got too hard and embarrassing for me. I love being here, it is so good being out in a group with people in the same situation.

Above: Mother and daughter at Life Stories

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“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

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Transport In some situations Dementia Canterbury staff or volunteers provided transport. Six of the carepartners mentioned this as one of the best things about the group. This was not only convenient, but part of the social experience: “

It was lovely to hear him talk about enjoying the group, company, and staff who picked him up. One group participant spoke of being intensely humiliated by being a burden. He enthused about the transport and the opportunity to do something “completely independent’ of his care-partner. Transport could also help the care-partner connect with those involved in running the groups: “

[She] was lucky, as she was picked up by her social worker to attend and it allowed me a chance to talk with Jackie.

The Dementia Canterbury coordinators report that clients living alone often had specific needs to enable group attendance. Most would not be able to navigate the planning require to use public transport or a taxi. The provision of transport (and reminder calls) was essential to ensuring access for this client group who are particularly vulnerable social isolation. Transport was also essential for other group attendees who had care-partners who working or unable to drive. For care-partners who provided transport themselves, this could cut into respite time: “

It gave me space, but not enough time mostly to complete what you needed to do before picking her up again

Above: One of the participants being driven

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. Dementia can cause apathy, or a difficulty in getting going, that was mentioned by three care-partners. Where transport was provided the staff could help the person ‘get going’, but for a care-partner coping on their own this was difficult: “

Transport was difficult for me as [her] motivation was low, and I did struggle to get her there, but I know she enjoyed it as she talked about how much she enjoyed it

Increased provision of transport was one of the few suggestions for improvement that were offered by the typically grateful care-partners: “

If [she] could be picked up or dropped off, that would be fantastic

Frequency Both participants and care partners expressed enthusiasm to participate more. The desire for more frequent engagement was the most common suggestion in the care partner satisfaction survey –more groups, more often “ “

I wish we could do this baking every week (Participant) I feel alive again. Can we do it every week? (Participant)

“ “

More groups, more regularly would benefit us (Care partner) We would go more if it was on more (Care partner)

The group coordinators reported that they noticed advantages for groups that ran more often compared to those offered monthly. Clients were better able to anticipate the regular routine – for example one gentleman remembered that he had “something really important on Friday mornings”, even when he could not identify what it was. Frequency was also seen as helping connections develop more quickly and to foster orientation and familiarity. To maximise participation it will be important to timetable groups so that they do not clash with each other, to enable people to build a portfolio of participation.

Above: Gardeners at work

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A desire for more frequent attendance may not only merely reflect of the popularity of the groups and the advantages of frequent attendance, including perhaps efficacy. While the groups are effective in creating positive ‘in the moment’ experiences, frequent engagement may be required to provide the required “dose” in the context of the natural deterioration in dementia to have a positive overall effect. For example it is recommended that cognitive stimulation therapy is engaged in twice a week to be effective.

We compared the clients who at the 6 month follow-up were attending groups less than 4 times a month (on average) with clients who were attending groups once a week or more (on average). As the graphs below show, there was a pattern for participation to have impact for the clients who attended frequently.

While this pattern is interesting, any interpretation must be tentative without larger numbers to enable statistical analysis across frequency. In addition, the care-partners of high frequency While the evaluation was not specifically designed participants had noticeably higher carer-stress to look at the question of frequency, the staggered initially, and this may have driven the higher introduction of the groups meant that a third of the frequency of engagement. It is also clear that the participants picked up new groups after the 6care-partners and clients overall reported positive impacts in their comments and the satisfaction month follow-up. questionnaire at follow-up, not just those who were attending weekly.

Improvement in quality of life for participant

Decline in carer stress 32 41

27

36

22

31

17 12

26 Before High freq

After Low freq

Before High freq

After low freq

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Impacts for community partners and volunteers Community partners For community partners, the collaboration with Dementia Canterbury could be a useful mechanism for meeting their aims of increasing access and inclusion: “ [The Court Theatre] had some accessibility initiatives previously but there was so much more to do to meet the needs of our diverse audience. “

the programme embodies the strategic goals of the organisation, local council and Public Libraries of New Zealand



From the Gallery’s perspective, having such a programme …contributed to the gallery’s objective of arts access for all.

The collaboration has provided opportunities for staff to expand their skills and empathy in working with this group “



[Artzheimers] has heightened staff awareness and understanding of dementia considerably. This especially has had a marked impact on our visitor hosts who show more compassion and understanding when dealing with elderly visitors. The volunteer guides are passionate advocates for the programme and are continually expanding their knowledge and presentation skills by engaging with the needs of this particular audience. The relationship with Dementia Canterbury has grown with benefits for both clients and staff with positive interactions with a better understanding of dementia

Above: A client enjoying costumes backstage at the Court Theatre

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Recognition In July 2017 the Court Theatre was recognized with the “Arts for All” award in the Arts Access Awards 2017 which recognizes outstanding contributions to accessibility and inclusion in the arts. The theatre was described as a shining example of inclusion for its work including the targeted theatre and story-telling programme with Dementia Canterbury. Rachel Mears, Education manager for the Court Theatre describes the collaboration with Dementia Canterbury as a highlight for 2017: “The project has been incredibly diverse and included intergenerational theatre making, trips to watch shows and time spent exploring the backstage components of the theatre. .. [and] the Theatre making project with young performers …For our team at The Court we get a buzz when we get to see how our work connects with people on a personal and emotional level”.

In October 2017 Dementia Canterbury were finalists in the Champion Canterbury Business Awards in the Champion Canterbury Community Impact section. A mix of staff, Board, volunteers, clients/care partners, collaborative partners and supporters attended the awards ceremony for an evening of celebrations. Darral Campbell, Manager of Dementia Canterbury says that “though we did not take home the Award on the night, we felt like winners. To be acknowledged by the Business Community for our Respite/Activity Pilot reinforces to us the importance of community collaboration in the delivery of meaningful activities in normalized environments for people living with dementia”. Above: Darral Campbell from Dementia Canterbury (middle), with Ross Gumbly and Rachel Mears from Court Theatre at the parliamentary awards ceremony.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

Volunteers The volunteers felt that being involved in the groups altered their understanding of dementia, and helped develop “better understanding and empathy”: “



Just being around different people and different stages of their dementias. It’s been a really positive learning experience I have always had a good understanding of the condition from a medical point of view but being involved has given a more emotive understanding …

The volunteers were strongly positive about the benefits of the groups for the people involved: “

I think the social element as well as the exercise element of swimming is fantastic. I think that for 90 minutes swimming they forget about the difficulties of living with

their conditions and just have fun. It’s obvious that it’s the highlight of their weeks. “

Seeing the …impact on their self-esteem and confidence…I find all of them really coming out of their shell

This made it a rewarding experience to be involved in: “

I think this is such a worthwhile project, not only for the clients but for the volunteers as well



It’s the most rewarding 1 2/2 hours of my month

Above: Kaikoura staff and volunteer at the inaugural “Winter’ themed Next Chapter group

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Conclusions This evaluation found that the pilot activity programme offered by Dementia Canterbury was received enthusiastically and consistently seen as beneficial. The activity groups were seen as meaningful and having a positive impact including providing enjoyment, social connection and opportunities to continue aspects of identity and build confidence [17]. Being located in the community helped to normalize the activities and provided opportunities to get out of the house. These components benefited not only the individual but also the volunteers and community partners.

Positive impacts of the community-based activity respite programme Community-based (getting out, feeling normal)

Individual mood, confidence, maintenance of identity

Care-partner Reduced stress, time to do things, knowing in safe hands, quality time

Helpers, Community Accessibility, empathy, volunteer skills

Doing

Social Interaction

(enjoyment, continuity of normal activities / identity, something to look forward to and talk about)

(social connections, laughter, being with others ‘in the same boat’)

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Statistics The voices of people with dementia, care-partners, observers and helpers in this evaluation speak powerfully of the impact of this activity programme. The continuation of the programme will help Dementia Canterbury to continue to make a positive difference to the lives of those involved.

Phasellus malesuada Recommendations to consider 

Seek funding to increase access to the provision of transport



Continue to sustain and grow the range of activities offered



Investigate further the frequency required to sustain impacts beyond the short term



Consider increasing the frequency of monthly programmes to fortnightly – this may not only help increase frequency but also familiarity and routine



Consider recommendations to clients about recommended goals for frequency



Streamline reflective and feed-back tools to ensure that benefits for participants and care-givers continue to be documented as the programme moves beyond the pilot.

Charts Goes Here

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References 1.

Ministry of Health (2013). New Zealand Framework for Dementia Care. Wellington, NZ: Ministry of Health.

2. Hulme, J. (2013). Theatre makes dementia less of a drama. The Telegraph, May 19. 3. Alzheimer’s Australia (2013). Dementia friendly societies: the way forward. Hawthorn, Au: Alzheimers Australia. 4. Hughes, J. (2012). Society should embrace people living with dementia. Nursing Standard, 26(31), 2627. 5. Hulko, W. (2009). From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia, Journal of Aging Studies, 23, 131-144 6. Willis Newson Inc & Daykin, N. (2015). The Alive! Difference. An evaluation of Alive! Workshops and training. Bristol, UK: Alive Activities 7. Alzheimers New Zealand (2017). Getting our heads around dementia in New Zealand. Wellington, NZ: Alzheimers New Zealand 8. Alzheimers Society UK (2013a). The hidden voice of loneliness. London, UK: Alzheimers Society. 9. Alzheimers Society UK (2013b). Building dementia friendly communities: A priority for everyone. London, UK: Alzheimers Society. 10. Russell, D. W., Cutrona, C. E., De La Mora, A., & Wallace, R. B. (1997). Loneliness and nursing home admission among rural older adults. Psychology and Aging, 12(4), 574. 11. Partington, J., Gee, S., Leith, A-M., & Croucher, J. (2012). “Talking in a new way”: Older indivuals experiences of group work in an acute ward setting. Journal of Gerontological Social Work, 55, 72-86. 12. Bullock, A., & Brannigan, K. (2011). Effectiveness of activity-based group work in community mental health: A systematic review. American Journal of Occupational Therapy, 65, 257-266. 13. Franklin Gould, V. (2013). Reawakening the mind. Evaluation of Arts 4 Dementia’s London Art Challenge: Arts interventions to re-energise and inspire people in the early stages of dementia and their carers. London UK: Arts 4 Dementia. 14. Moody, E., & Phinney, A. (2012). A community-engaged art program for older people: Fostering social inclusion. Canadian Journal on Aging, 31(1), 55-64.

15. Cohen-Mansfield, J. (2010). The impact of past and present preferences on stimulus engagement in nursing home residents with dementia. Aging and Mental Health, 14(1), 67-73. 16. van der Ploeg, E.S., Eppingstall, B., Camp, C.J., Runci, S.J., Taffe, J., & O’Connor, D.W. (2013). A randomized crossover trial to study the effect of personalized, one-to-one interaction using Montessori-based activities on agitation, affect, and engagement in nursing home residents with dementia, International Psychogeriatrics, 25(4), 565-575.

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity programme

17. Phinney, A., Chaundhury, H., & O’Connor, D. L. (2007). Doing as much as I can: The meaning of activity for people with dementia. Aging and Mental Health, 11(4), 383-393. 18. Cheung, J. & Hocking P., (2004). Caring as worrying: the experience of spousal carers. Journal of Advanced Nursing, 47(5), 475-482. 19. Roud, H., Keeling, S., & Sainsbury, R. (2006). Using the COPE assessment tool with informal carers of people with dementia in New Zealand. The New Zealand Medical Journal, 119, U2053. 20. O’Connell, B., Hawkins, M., Ostaszkiewicz, J., & Miller, L. (2012). Carers perspectives of respite care in Australia: An evaluative study. Contemporary Nurse, 41(1), 111-119. 21. Theis, S.L., Moss, J.H. & Pearson M.A., (1994). Respite for caregivers: An evaluation study. Journal of Community Health Nursing,. 11(1), 31-44. 22. Arksey, H., Jackson, K., Croucher, K. . . . & Baldwin, S. (2004). Review of respite services and short breaks for carers of people with dementia. London, UK: National Health Service. 23. Smith, S.C., Lamping, D.L., …& Knapp, M. (2005). Measurement of health-related quality of life for people with dmentia: development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technology and Assessment, 9(10), 1-93. 24. Bédard, M., Molloy, D.W., Squire, L., Dubois, S., Lever, J., & O’Donnell, M. (2001). The Zarit Burden Interview: A new short version and screening version. The Gerontologist, 5, 652-657. 25. Pearlin, L., Mullan, J., Semple, S., & Skaff, M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583-594. 26. McKee, K.J., Lamura, G. ,…& Szczerbinska, K. (2003). The COPE index – a first stage assessment of negative impact, positive value and quality of support of caregiving in informal carers of older people. Aging and Mental Health, 7(1), 39-52. 27. Kinney, J.M., & Rentz, C.A. (2005). Observed well-being among individuals with dementia: Memories in the Making, an art program, versus other structured activity. American journal of Alzheimer’s Disease and Other Dementias, 4, 220-227. 28. Camp, C.J. (2010). Origins of Montessori programming for dementia. Non-pharamcological Therapies in Dementia, 1(2), 163-174. 29. Unforgettable (2017). Picture this: The impact of art and galleries for people with dementia. Wwww.unforgettable.org 30. Halpern, A. R., Ly, J., Elkin-Frankston, S., & O’Connor, M. G. (2008). “I know what I like”: stability of aesthetic preference in Alzheimer’s patients. Brain and Cognition, 66(1), 65-72. 31. Camic, P.M., Baker, E. L. & Tischler, V. (2015). Theorizing how art gallery interventions impact people with dementia and their caregivers. The Gerontologist, 1-10. 32. Spector, A., Woods, B., & Orrell, M. (2008). Cognitive stimulation for the treatment of Alzheimer’s disease. Expert Review of Neurotherapeutics, 8(5), 751-757. 33. Jarrott, S.E, & Gigliotti, C. M. (2010). Comparing responses to horticultural-based and traditional activities in dementia care programs. American Journal of Alzheimer’s Disease and Other Dementias, 25, 657-665.

57

58

“I feel alive”: An evaluation of Dementia Canterbury’s community based activity respite programme

34. Neville, C., Clifton, K., Henwood, T., Beattie, E., & McKenzie, M.-A. (2013). Watermemories: A swimming club for adults with dementia. Journal of Gerontological Nursing, 39(2), 21-25. 35. Social Care Institute for Excellence (2007). Reminiscence for people with dementia. SCIE Care Online. 36. Woods, B., Spector, A. E., Jones, C. A., Orrell, M., & Davies, S.P. (2005). Reminiscence therapy for dementia. The Cochrane Library. 37. Davey, J. (2001). What can the census tell us?. In S. Gee (Ed.) Experience of a life time: Older New Zealanders as volunteers. Wellington, NZ: Victoria University of wellington. 38. Gee, S. (2001). “Those who help others help themselves”: Who helps and what might they gain. In S. Gee (Ed.) Experience of a life time: Older New Zealanders as volunteers. Wellington, NZ: Victoria University of wellington. 39. Bowling, A. (2005). Ageing well: Quality of life in old age. Maidenhead, UK: Open University Press 40. Kindell, J., Burrow, S., . . . Keady, J.D. (2014). Life story resources in dementia care: a review. Quality in ageing and older adults, 15(3), 151-161. 41. Thompson (2011). Using life story work to enhance care. Nursing Older People, 23(8), 16-21. 42. Gridley, K. (2016). Understanding the outcomes of life story work. In P. Kaiser & R. Eley (eds.) Life story work with people with dementia. London, UK: Jessica Kingsley Publishers. 43. Atchley, R. C. (1989). A continuity theory of normal aging, The Gerontologist, 29(2), 183–190. 44. Cosgrove, P. (2014). Don’t fence me in. Living in the community with dementia. Christchurch, NZ: Alzheimers Canterbury. 45. Rebeiro, K. L. (2001). Enabling occupation: The importance of an affirming environment. Canadian Journal of occupational Therapy, 66, 80-89.

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Dementia Canterbury Address: 314 Worcester Street, Christchurch Postal Address: PO Box 32074, Christchurch 8147 Ph: 0800 444 776 West Coast: 0800 259 226 Email: [email protected] Website: www.dementiacanterbury.org.nz