ASNS Annual Report 2021-2022

Annual Report 2021-2022

Strong. Unshakeable. Committed. This was the message we delivered to our stakeholders when we sent you our last annual report in the summer of 2021, which outlined the Alzheimer Society of Nova Scotia’s response to the COVID-19 pandemic. Little did we realize back then that we’d be reporting, yet again, on how we have continued to support our clients on their dementia journey while also managing the realities of a global pandemic. Thanks to people like you, this year the Society remained fully in service to the thousands of Nova Scotians living with dementia, and the thousands more who support them. You can read about how we achieved that, and our 20212022 highlights, in the following pages.

Something else shifted this year. As we continued to deliver safe supports online, we became even more aware of the ever-increasing incidence of dementia in Nova Scotia. A study in 2010 told us that the number of people living with dementia in our country would double by 2039. Twelve years later, there are still barriers that remain for individuals in getting the support they need. Barriers facing folks who live in rural or isolated communities. Barriers to remaining at home for longer and accessing adequate supports to do so.

Barriers to transitioning to long-term care. Barriers for folks who require more culturally nuanced services and information. Even barriers in getting a dementia diagnosis.

We recognized that supporting individuals is only one part of the puzzle. If we are to truly be positioned to manage the continually increasing demand for our services, we need to elevate our advocacy for systems-level change and innovation. We need to work with healthcare systems and partners to provide holistic, wraparound services for every stage of the dementia journey.

We will release our new strategic plan in 2022, and it signals a shift in how we plan to leverage innovation to support dementia care in our province. You can read more at the end of this report.

In the meantime, THANK YOU for your continued support! It’s a pleasure to share our 2021-2022 highlights with you.

Sincerely,

John Britton, CEO

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Table of Contents

2021 - 2022 Highlights............................................................... 3 Responding to the Needs of our Clients................................... 5 A Safe and Creative Space to Connect...................................... 7 Ride for Dementia: 9 Days, 2,400KM........................................ 9 IG Wealth Management Walk for Alzheimer’s...................... 11 Planning for Post-Pandemic Services...................................... 13 The I.D.E.A. of Belonging........................................................ 15 Supporting the Dementia Care Sector.................................... 17 Financials.................................................................................. 19

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2021 - 2022 Highlights Even with pandemic restrictions, we had an amazing year with our clients, staff, partners and donors.

• 4,111 InfoLine contacts made • IG Wealth Management Walk for Alzheimer’s raised nearly $140,000 • Annual Provincial Conference had 356 people attend live online • Held 68 online public education sessions • $30,000 sold in our new online 50/50 initiative • 5 new staff joined our Team • 40% increase in referrals from First Link® partners • Facilitated 97 support groups • Introduced a new young-onset dementia specific caregiver support group

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Responding to the Needs of our Clients We launched a new program this year as a direct response to the growing needs of our clients – a caregiver support group specific to those supporting someone living with young-onset dementia.

When you think about dementia, you likely imagine an elderly person. While age is the biggest risk factor, younger adults can also develop dementia. When symptoms start before the age of 65, it’s known as young-onset dementia.

The symptoms of young-onset dementia present in similar ways, but the experiences of people with young-onset, and their friends and family, can be vastly different. Caring for young children still at home, still being in the workforce, and increased stigma are just some of the things that can make this experience different.

We heard from clients impacted by young-onset dementia that they didn’t necessarily feel like they fit into the other caregiver support groups because their experience wasn’t the same.

Ann Sheree Reynolds cares for her husband, Doug, who was diagnosed with frontotemporal dementia at age 61. She is one of the members of the youngonset caregiver support group, and she had this to say: In creating the support groups for those experiencing a loved one with young-onset dementia, the Alzheimer Society of Nova Scotia has shown the willingness and commitment in providing groups tailored to the concerns and needs of the care partners. This is in addition to the various other supports they have developed over the years. It’s a unique opportunity to share with others who are experiencing the questions and emotions which accompany the diagnosis. Our group is helping to support one another as we navigate uncharted waters and finding hope for the future and sometimes humour for today.

We’re proud we could meet this need in a timely manner and create a space where caregivers of people with young-onset dementia feel like they belong.

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This was clearly a gap that needed to be filled. Our team responded quickly to coordinate with interested clients and find facilitators.

Ann Sheree Reynolds cares for her husband Doug, who is living with young-onset dementia.

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A Safe and Creative Space to Connect Artful Afternoon was our first program to return to in-person sessions this year.

We were able to welcome participants for two in-person sessions before we made the difficult decision to move the program back online when COVID-19 cases rose again this winter.

It was wonderful to have the opportunity to see clients in-person again, and to see them enjoy some much-needed social interaction. Our staff were adaptable, quickly gathering art kits for clients to pick up to participate in the program from the comfort of their home.

Artful Afternoon is held in partnership with the Art Gallery of Nova Scotia (AGNS) and provides a fun and creative space for people with dementia and their care partner to connect with art. This creative program compliments our education and information programs, creating well-rounded support.

We held 10 Artful Afternoon sessions this year with 19 participants. Through this, we’ve received excellent feedback from our program participants that both virtual and in-person formats provide an interesting, social space that is dementia-friendly and accessible to people regardless of their prior experience with art: We always have great interaction with each other during these sessions.

Being able to see each other’s version of what we each take away from each of these sessions is an incredible experience. Learning from each other and from Lux is incredible.

My Mum has something to look forward to, and it is special because it is her activity. She feels good because she knows she is not the only one who suffers from memory loss. The program is most inspirational. She works on the projects for a long time,and it also inspires her to do a lot more. It boosts her confidence and self-worth. It is a program that has benefited her in more ways than is imaginable.

We’re happy to provide a space for people living with dementia to connect with their care partners and each other.

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Both in-person and online, Lux Habrich, an artist from AGNS, leads the group through a gallery tour and an art project using art materials in carefully curated art kits prepared by AGNS for the virtual version of the program. Participants have shared they often use these materials long after the program ends.

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Ride for Dementia: 9 Days, 2,400KM When Dr. John Archibald contacted us in the spring of 2021 with an outside the box fundraising idea, we were immediately along for the ride.

John’s father was diagnosed with Alzheimer’s disease in 2014. While John’s area of expertise is not Alzheimer’s research, he did come to learn a lot about dementia during his time helping his mother care for his father.

He learned about dementia prevalence in Nova Scotia and across the country (17,000 and half a million, respectively). The annual healthcare costs for Canadians with dementia (projected to reach $17 billion by 2031). He learned about the various forms of dementia, risk factors, and that there is currently no cure for dementia.

This experience was his motivation to raise funds for dementia research in Nova Scotia. And to do it doing one of his favourite pastimes – cycling.

On July 1, 2021, John set out on the Cycle of Life: Ride for Dementia – a nine-day, 2,400KM journey cycling the perimeter of Nova Scotia.

He persevered through rain, cold and a post-tropical storm (and a little bit of sun) to raise funds for us here at the Alzheimer Society and for the Maritime Brain Tissue Bank via the Dalhousie Medical Research Foundation.

John’s journey included stops along the way to visit family and friends, and most importantly, a stop on the last leg of the trip in Lunenburg to visit his Dad. With the support of his generous sponsors – Cyclesmith, Jakroo and McInnes Cooper – and many, many supportive donors, he raised nearly $30,000 to support dementia research in Nova Scotia.

We can’t thank John enough for his support and determination.

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John visits his father on the last leg of his journey.

Photo by Anne Launcelott.

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IG Wealth Management Walk for Alzheimer’s We’ve learned a lot about online events and bringing people together from afar over the past couple of years. When it came time for the 2021 IG Wealth Management Walk for Alzheimer’s, we were ready to rally our Walkers for an online event: Walk Your Way in May! Walkers chose their own day throughout the month of May to head out and do their walk, their way. We came together online from across the country at the end of the month for a wrap-up broadcast celebration.

Our top fundraising team, Making Strides, was led by a dedicated volunteer and former board member, Marjorie Sullivan. When asked about why she Walks, she said: The Walk is a wonderful opportunity to bring family and friends together to remember and honour family members we have lost to this terrible disease, and to support family and community members currently living with it. No one should have to face this journey alone. Our fundraising efforts are driven by the hope that we can help people with Alzheimer’s right now and, through research, look to a future without Alzheimer’s.

Thank you to everyone who has continued to support our biggest annual event, and we hope to see you in person in 2023!

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Even without an in-person event, our people showed up and showed their support! With 220 Walkers across 40 teams, we raised nearly $140,000 to support Nova Scotians living with dementia.

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Planning for Post-Pandemic Services Throughout this past year, we’ve been planning for what our programs and services will look like post-pandemic. We know that online programming will be here to stay in some capacity when we invite our clients back in person again. We want to approach this thoughtfully, and we’re lucky to have research partners to help us plan our post-pandemic services.

With the support of Dr. Paula McLaughlin, NSH Neuropsychologist with Seniors’ Health, we’ve been working with Jennifer Haley, NSH Psychologist with Seniors’ Health, to evaluate our virtual Shaping the Journey: living with dementia program.

In 2012, we formed a partnership with the Nova Scotia Health (NSH) Seniors’ Health team. This partnership focused on developing and delivering programs to individuals living with early-stage dementia, including the Early-Stage Forum, Coffee and Conversation, and Shaping the Journey: Living with dementia. Ten years later, this partnership has grown along with our commitment to evidencebased programming, research, and evaluation.

Originally developed by the Alzheimer Society of British Columbia, Shaping the Journey: Living with dementia was adapted for delivery in Nova Scotia in 2012. This psychoeducation and support group program is designed for persons living with dementia (newly diagnosed and/or in the early stages) and their care partners. It is delivered as a series of six weekly two-hour sessions.

When the COVID-19 pandemic started, all of our in-person programs were put on hold. In response, we came together with Jennifer Haley to ensure that individuals living with dementia were able to connect with others through access to programming. Shaping the Journey was adapted for virtual delivery and launched in September 2020. To date, the virtual Shaping the Journey has been delivered five times!

We know that the virtual program was a success during the pandemic. We’re eager to learn if delivering the program virtually long-term is feasible. Preliminary data indicate that the virtual program is well received by both people with dementia and their care partners, and that it can be delivered virtually in a smaller group format across seven weekly sessions.

This evaluation, along with a comprehensive dementia care survey (dementiacaresurvey.ca), is being used to understand whether telehealth and virtual supports are an effective way to improve access to dementia care in Nova Scotia beyond the pandemic.

This unique programming and research partnership between the NSH Seniors’ Health team and our Society continues to help us better identify, evaluate, and improve the supports and services available to Nova Scotians living with dementia.

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Jennifer Haley meets with the research team working on the Shaping the Journey study.

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The I.D.E.A. of Belonging In last year’s report, we spoke about our intention to expand our approach to diversity and inclusion. We’re proud to share that we’ve made huge strides over the past year. We use the acronym I.D.E.A. – Inclusion, Diversity, Equity and Accessibility – to apply a person-centred lens to our work, and ensure we are fostering a sense of belonging in all that we do. It’s always a great I.D.E.A. to help folks feel like they belong.

We started the year with a statement of intention to formally launch our work in Inclusion, Diversity, Equity and Accessibility. At the heart of that statement is the understanding that dementia does NOT discriminate. That the Society must ensure that we’re here to support every Nova Scotian on the dementia journey and that each person who engages with us feels a sense of belonging with the Society.

At the Alzheimer Society of Nova Scotia, we believe everyone affected by dementia has the right to live their life the way they want to live it, whether they’re living with the diagnosis or supporting someone who is. Core to that belief is that everyone has the right to be the person they are; to live without fear or prejudice regardless of race, age, gender, sexual orientation, faith and

INCLUSION

DIVERSITY

BELONGING

EQUITY

ACCESSIBILITY

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belief, or a disability, like dementia. Everyone should have the opportunity to contribute to society in the way that feels right for them. We all have the right to live in a world which demonstrates respect, values diversity and works towards true inclusion for all.

We’re happy to share with you some of the key things we did this year to move the I.D.E.A. of Belonging forward: • Statement of Intention shared publicly in the spring of 2021.

• Our provincial conference focused on diversity in dementia care with the theme Supporting Dementia in all its Diversity (read more on page 18).

• Welcomed Chelsea Slawter-Wright to work directly with African Nova Scotians to engage the communities and provide culturally specific services.

• Held education sessions for the Arabic community through community partners ISANS and Veith House.

• Invested in ongoing I.D.E.A. training for our staff team.

• Became a CCDI Employer Partner and integrated I.D.E.A. into HR processes.

• Implemented a policy of including Indigenous land acknowledgements in all of our events and presentations.

Ngozi Iroanyah, Manager, Diversity & Community Partnerships at Alzheimer Society of Canada, visted Nova Scotia this year for training wth our staff.

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Supporting the Dementia Care Sector To best meet the needs of people with dementia, we recognize the role of the whole care team, including care partners and the many dynamic disciplines that make up the dementia care sector in Nova Scotia. We are always looking for ways to partner with and support the healthcare sector.

This year, we updated our First Link® form so healthcare providers can now digitally refer persons with dementia and their care partners for tailored ongoing support throughout the dementia journey. This direct referral helps to avoid crisis as it means we connect to families up to 11 months sooner than those who self-refer.* We received 592 First Link® referrals this year. This program builds relationships with our healthcare partners as we support their patients and become a trusted source of information outside of the clinical setting.

Some ways we share the latest evidence: • InfoLine Service, to ask questions or source client-facing materials on dementia-related topics.

• January Awareness Month mail out, sharing tips and tools with the long-term care and home care sector.

• U-First! for Healthcare, a six-hour workshop that develops common knowledge, language, values, and approach to caring for people with Alzheimer’s disease or other dementias. It is open to frontline staff of publicly funded long-term care and home support agencies across Nova Scotia. We held 20 U-First! for Healthcare workshops this year.

Mallory is part of our knowledgeable and caring InfoLine team.

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In 2021, we welcomed a record-breaking 356 attendees from across Nova Scotia (and beyond!) to virtually discuss promising practices for Supporting Dementia in all its Diversity.

It presented a diversity that we generally don’t think about. As a care provider, we are diagnosing a person and sometimes don’t realize the cultural impact this has on the person. Some of these presentations have made me think more about the person who is receiving a diagnosis and how it impacts them as a whole, along with the family and community.

- Conference attendee

Holding virtual conferences over the past two years allowed us expand our reach to include people from across the province, country and even the world.

We’re looking forward to welcoming our attendees in person again in 2022, but will now have a virtual option each year to continue to reach beyond HRM.

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Our annual provincial conference provides a space where healthcare professionals, care providers, educators, researchers and students can exchange the latest on research and dementia care in Nova Scotia.

*‘Throwing a lifeline’: the role of First Link® in enhancing support for individuals with dementia and their caregivers. Carrie A McAiney (2012)

Behind the scenes of this year’s virtual provincial conference where we live streamed to nearly 400 participants.

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Financials Revenues

Donations $1,172,399 Individual Giving: $723,753 Corporate & Foundation Giving: $111,745 Alzheimer Society of Canada: $336,901

Government Funding $1,399,718 Administration $48,439 Expenses

Programs & Services $1,816,463 Fundraising $563,013 Administration $204,342 Research $100,870 Accurate at the time of publishing.

Based on draft financial statements to be approved by the Board on June 22, 2022.

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As you can see, 2021-2022 saw the continuation of our evolution as our staff team navigated the realities of our post-COVID world. We have learned a great deal, and we placed significant focus on extensive community consults to help guide our next steps. Our new strategic plan will be launched fully in fall of 2022 and will signal not only growth in direct supports for those on the dementia journey, but also a commitment to systems-level advocacy and innovation. In the closing pages of this report, we are excited to outline our new strategic intentions. We intend to support our partners in long term and continuing care in ensuring appropriate support and care transitions. We plan to work collaboratively to ensure a timely diagnosis for every Nova Scotian that needs one. We will leverage our extensive networks to cultivate dementia friendly communities. And we commit to ensuring that our services are available to ALL people in Nova Scotia on the dementia journey, regardless of where they live or how they identify.

It’s a huge commitment, but an essential one. And we know that with your support, we can make it happen. Thank you for being part of our ongoing story as we look to light the future path for dementia support in Nova Scotia.

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Lighting our Future Path: Strategic Intentions 2022-2027

Our Strategic Vision

Our Mission

All Nova Scotians affected by dementia are empowered through timely, accessible and culturally specific care, support, information and services.

The Alzheimer Society of Nova Scotia is committed to alleviating the personal and social consequences of Alzheimer’s disease and other dementias and promoting the search for causes, treatments and a cure.

What we’re here to do Change the conversation about dementia: Improve public awareness about brain health, promote risk reduction, spark dynamic public discourse, and reduce stigma by encouraging people to take concrete action to make their communities dementia friendly.

Enhance the quality of life of people affected by dementia: Ensure Nova Scotians can receive a timely diagnosis, culturally appropriate support and are connected to our First Link® services. Help those living with dementia, and their care partners, have the skills and resources to live as well as possible at all stages of their journey.

Create communities of practice: Foster a collaborative impact approach to educating staff and volunteers in healthcare settings, municipalities, businesses and public services so they have the skills to include and support ALL Nova Scotians living with dementia.

Influence policy related to dementia: Collaborative and supportive advocacy with healthcare, municipal and provincial partners, leveraging the voices of those with lived experience to ensure focus on solutions to issues that matter most to them.

Shape the future for people affected by dementia: Support provincial and national research exploring causes, therapies and cures, quality of life and care improvements. Promote knowledge translation and uptake of innovation in the community and healthcare.

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In September 2021, we began the process of developing our new strategic plan. A series of consults across all health zones, with diverse communities, and with input from key stakeholders have highlighted the following strategic intentions:

ADVOCACY. Through collaboration & community engagement we will...

• Partner with and amplify the voices of people affected by dementia to identify and escalate key advocacy issues.

• Work with government, healthcare, and sector partners to advance the Nova Scotia Dementia Strategy and support the development of person-centred and dementia-friendly policies, processes and legislation.

• Partner with Alzheimer Societies across Canada to focus on pan-Canadian dementia issues.

REDUCE RISK & STIGMA. Through targeted public awareness & engagement we will…

• Provide relevant, timely and evidence-based public education that promotes the understanding of brain health and risk reduction strategies.

• Empower Nova Scotians to take a proactive role in their understanding and adoption of risk reduction strategies.

• Address stigma through dynamic public discourse about dementia.

• Leverage the Charter of Rights & Freedoms for People Living with Dementia to ensure those affected live in communities where they are welcomed, supported, valued and included.

ENHANCE QUALITY OF LIFE. Through a person-centred & culturally aware lens, we will…

• Use data-driven evaluation to make evidence-based improvements to our programs and services.

• Ensure sustainable and effective supports for every stage of the dementia journey, from diagnosis to end-of-life.

• Provide appropriate and accessible services for people affected by dementia, no matter where they are in Nova Scotia.

• Build the capacity, knowledge, and resilience of healthcare providers, sector partners and care partners.

• Build support to create and promote inclusive, dementia-friendly communities.

ADVANCE RESEARCH. Through support of local & nationwide research, we will…

• Ensure the voices of those with lived experience are included and drive the research process.

• Contribute to the next generation of researchers through local bursaries and the national Alzheimer Society Research Program.

• Partner as knowledge users to advance dementia research in Nova Scotia.

• Facilitate public understanding of the types and impacts of dementia research.

• Allocate resources to ensure advancement of research and knowledge translation.

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