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Research Wrap: Brain Health and Sleep

Let’s talk about brain health: Sleep

As #DAI progresses with its series of monthly research blogs, we thank Laura Garcia Diaz for our April research blog, focused on the impact of sleep on dementia.

Thank you Laura.

“I live in Canada and on March 13th our clocks went forward one hour. Even though an hour difference may not sound like a lot, the week after the time changes (especially when we lose an hour in the process), I always feel off. Since the topic of sleep has been on my mind lately, I decided to dedicate this blog to it. What does the science tell us about sleep and brain health?

Sleep is essential for life, so it may not be surprising to learn that sleep plays a very important role in keeping our brain healthy. Sleep has been shown to play an important role in helping us remember things, known and memory consolidation, and learning (Krause et al., 2017).

It appears that while we sleep our brain is working hard to help us remember everything we did and/or learned that day. Studies have also shown that abnormal sleep-wake patterns and breathing difficulties while sleeping (for example, sleep apnea) are associated with an increased risk of dementia (e.g., Yaffe et al., 2014).

Although the relationship between sleep and dementia is still being studied, sleep is now recognized as a risk factor for cognitive decline and Alzheimer’s disease. Based on this information, it appears that sleep plays an important role in maintaining brain health as we age.

Although the role of sleep on supporting our brain health has been of interest to scientists for many years, the amount of sleep required for optimal brain health is still unclear (Tai et al., 2022). When reviewing the literature, something that I found interesting, is that going to bed late at night and wake up late in the day has been found to be associated with cardiovascular disease and mortality (Knutson et al., 2018; Partonen, 2015). I have always been told to aim for 7-8 hours of sleep each night.

When reviewing the literature, I found that both short (less than 7 hours) and long (more than 10 hours) sleep duration appears to impact cognitive performance (for example, attention and working memory) (Hirshkowitz et al, 2015; Gildner et al., 2014).

However, some studies have also shown no relationship between sleep duration and cognition (e.g., Saint Martin et al., 2012). Interestingly, in a recent study, six or less hours of sleep at night were found to be associated with a higher dementia risk, when compared to sleeping seven hours (Sabia et al., 2021). Similarly, in another recent study, it was found that peak cognitive performance was associated with seven hours of sleep at night (Tai et al., 2022).

Although the science does not appear to have a definitive answer regarding the sleep required for optimal brain health (particularly for supporting cognition), it does appear that there are benefits to getting 7 hours of sleep at night. I did not conduct a thorough research on this topic, so if anyone is interested in learning more about this, please let me know in the comments and I can dedicate another blog to this.

I thought I’d be good to end this blog with some information about sleep hygiene.

Here are some tips for better sleep:

  • Try to go to sleep and wake up at the same time every day.
  • To prevent you from having to go to the bathroom in the middle of the night, try not to drink a lot of liquids before going to bed.
  • If possible, avoid heavy meals too close to bedtime.
  • Try to relax before bed. Something that I like to do is light yoga followed by a 10 min meditation. It always helps me have a better sleep.
  • If you are a coffee or tea drinker, try limiting your caffeine intake in the afternoon and evening.
  • Technology seems to be everywhere these days, and if you are like me, I often have my phone with me everywhere I go. For a better sleep, try turning off all your devices at least 3—45 minutes before you go to bed.
  • Try to move your body every day!
  • If you are a napper like me, try to restrict your naps to a maximum of 45 minutes.

I have not always prioritized my sleep, but since starting my PhD program I have made an effort to develop good sleeping habits. I am now very strict about my nighttime routine and incorporating the strategies mentioned in this blog has really made a difference!

Do you have a nighttime routine? I’d love to learn what helps you get a good night’s sleep!

Laura

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References

Gildner TE, Liebert MA, Kowal P, et al. (2014). Associations between sleep duration, sleep quality, and cognitive test performance among older adults from six middle income countries: results from the Study on Global Ageing and Adult Health (SAGE). J Clin Sleep Med, 10, 613–621.

Hirshkowitz M, Whiton K, Albert SM, et al. (2015). National Sleep Foundation’s sleep time duration recommendations: methodology and results summary. Sleep Health, 21, 40–43.

Knutson, KL, et al. (2018). Associations between chronotype, morbidity and mortality in the UK Biobank cohort. Chronobiol Int, 35(8), 1045–1053.

Sabia, S. et al. (2021) Association of sleep duration in middle and old age with incidence of dementia. Nat. Commun., 12, 1–10.

Saint Martin, M. et al. (2012). Does subjective sleep affect cognitive function in healthy elderly subjects? The Proof cohort. Sleep. Med, 13, 1146–1152.

Partonen, T. (2015). Chronotype and health outcomes. Curr Sleep Med Rep, 1(4), 205–211.

Yaffe, K., Nettiksimmons, J., & Byers, A. (2014). Sleep disturbances and risk of dementia among older veterans. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 10, DOI:10.1016/j.jalz.2014.05.969

Tai, X., Chen, C., Manoar, S., & Husain, M. (2022). Impact of sleep duration on executive function and brain structure. Communications Biology, 5. https://doi.org/10.1038/s42003-022-03123-3

Media release 2: DAI rationale for service changes

DAI e-News April 2022
Detailed explanation of service changes

Dear colleagues and friends,

Further to our recent announcement of the changes in DAI, we wish to share the following more detailed explanation of why it became necessary to suspend so many of the DAI member services as well provide some history for context. Looking back has been essential to moving forward.

Most reading this will know that Dementia Alliance International (DAI) was founded on 1 January 2014 by eight people diagnosed with dementia, all with a dream to provide support for other people living with dementia, and to advocate for others with dementia to live more positively, for better services and support, and for our rights.

The eight founding members hailed from three countries with a collective dream for an international organization being a group ‘of, by and for’ people with dementia.

Exemplifying the nothing about us without us philosophy as the founders had all recognized that people with dementia did not truly have a voice having had it taken away by the stigma and discrimination of dementia. Their dream was to advocate for the autonomy and rights of all people living with dementia.

People with dementia have a human right to self-determination and full inclusion in society (not to be isolated, discriminated against, or segregated from society).

Peer to peer support for people with dementia

The founders learned there was no organization with this shared belief among thousands of organizations whose leadership and missions were all about research for a cure or supporting the carer and that those organizations rarely included persons living with dementia in their governing ranks or in their mission statements. It’s as if people with dementia didn’t exist, except when used as fund raising tools.

Even support groups for persons living with dementia required the participation of a family member or care partner and the conversation was dominated by the one without dementia. We knew persons living with dementia needed and deserved a safe and private place to participate in peer-to-peer support.

We knew this methodology was valid as Alcoholics Anonymous had already proven it works. Many had already been meeting online to support each other and it is that camaraderie and self-determination and the growth of a collective global advocacy that gave birth to Dementia Alliance International, an organization founded and led only by and for persons living with dementia across the globe.

For many years, people with dementia had been promised funding for a global group, as far back as the late 1990’s, when Christine Bryden and others founded the Dementia Advocacy Support Network International (DASNI). The late Dr. Richard Taylor had also been promised the same thing many times but as it was never forthcoming, hence the founders of DAI decided to set it up, as well as fund it and run it themselves.

DAI has always had to fight hard for anyone to support us, and then, it has never been more than piece-meal funding. Typically, just enough to set boundaries on our advocacy.

The Board and many of our members believe the best work that DAI has done is to provide peer to peer support, which in turn has empowered more newly diagnosed people to get back to living.

DAI was using Zoom long before the COVID pandemic; it started the first online peer to peer support group for people with dementia in the world, which continues today, and DAI still hosts the only living alone peer to peer support groups that we know of, in the world.

DAI’s global support for, and advocacy and representation of people living with dementia has been significant and ground-breaking, and we know we have much to be proud of.

Our members continue to report that our peer-to-peer support groups are an amazing, life-giving steppingstone for people more newly diagnosed with dementia to ‘get back to living’. This is truly powerful work, that even in times of covid, no other organisations yet do.

However, it appears to DAI that many people without dementia do not fully support our organisation. We base these assumptions on the actions and attitudes of others, and because so few people or organisations support DAI, promote DAI, partner with DAI, or donate to DAI.

In fact, pre covid, when zoom webinars being hosted by other organisations were rare, DAI tried a few times to add a small registration fee to their monthly webinars to help with financial sustainability.

Shockingly, a great many people in paid employment, including staff members of dementia charities, falsely registered as DAI members, to avoid the fee.

The other truth that DAI has had to face, especially members of DAI who are not active advocates with their national charities, is they are still fighting for Article 19 of the CRPD.

Inclusion is too often still missing, and it continues to be ‘about us, without us’.

For these and a numer of other reasons as outlined below, DAI had no choice but to reassess its future direction and services.

International dementia advocacy requires significant leadership, statesmanship and organizational skills as well as public speaking skills and knowledge of not only of the lived experience of dementia, but of policy, human rights and so on. Just being diagnosed with dementia, doesn’t provide these skills and thus there is a limited pool of talent to draw on. DAI has found it difficult to retain people in our membership with a passion for advocacy, who have the required skills and are willing to serve DAI, as they are often approached by the charities, researchers, and other organisations to get involved with their work.

This leaves DAI ‘dry’ and returning to square one repeatedly having to find and train new members to do the work. Even when DAI is actively working with others, it is mostly without renumeration to, or recognition of DAI or its membership.

DAI has faced some unique and difficult challenges 

Firstly, all DAI members live with dementia, and whilst they are often willing to volunteer, they also have significant time and financial constraints as they tackle the daily challenges of living with dementia, and the lack of post diagnostic support. Beyond that, DAI has faced many other significant difficulties.

  1. Other charities, organisations, researchers, start-ups, and individuals are constantly inviting DAI members to work with their organisations, which then means DAI has had difficulty retaining members to support their own organisation.
  2. Furthermore, other organisations usually have significantly more funding than DAI, and are therefore able to provide paid staff to support their volunteer self-advocates, making it even more difficult for DAI to retain active members.
  3. DAI has increasingly been asked over the last 8+ years to support researchers, individuals, and organisations with their grant applications, to promote their projects and surveys, but then not appropriately included in the work.
    • DAI is very rarely funded in the projects,
    • DAI is rarely included in the activities or focus groups projects, and instead of working with DAI, researchers go to the national dementia charities and their dementia working or advisory groups.
    • DAI is rarely referred to as an organisation for people with dementia, in the research outcomes, yet
    • DAI is expected to promote the surveys and other project activities.
  4. Since mid 2015, DAI has been thrilled to have the support and funding of strategic partners and other donations to fund its operations.
    • In mid 2015, ADI became DAI’s first strategic partner
    • In November 2018, Dementia Australia became a major donor; the following year, DA became our second strategic partner
    • Both partners currently provide $20,000 USD per year
    • DAI receives very few other donations.
  5. Clearly however, this means we have insufficient strategic partners and donors to remain sustainable in our current format, let alone have access to financial resources that can be used to hire paid staff to support our organisation.
  6. The lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.
    • Therefore DAI has had no choice but to modify its structure and services.
  7. We have been well supported by our non-member volunteers, but it is becoming increasingly difficult to find volunteer staff who have the time, or that don’t have an unconscious biases impacting their ability to work within the ‘nothing about us, without us’ philosophy, or hidden personal agendas which we do not fit with DAI’s vision or mission.
  8. Inclusion of DAI members by individuals and other organisations continues to be tokenistic at best.
  9. Recognition of the disabilities caused by dementia and adequate reasonable adjustments and disability support are not provided making it difficult or impossible for persons living with dementia to participate fully or equally.
  10. Finally, whilst others appear publicly to support DAI, most do not want a truly autonomous voice in this very crowded space, notably, when we differ to the goals of other organisations.

Working with DAI in the future

Moving forward, DAI will fulfil any current commitments made to research projects or other projects and organisations. It will also continue to work with the WHO and UN, as it has over the last many years.

However, it will need to limit its involvement with individuals and other organisations in the future.

It is obvious that people with dementia continue to be the only people in the dementia sector who are not paid for their labour and expertise, and where others who get to meet our members, then want them to work with and promote their organisations, but with little or no reciprocity to DAI.

Therefore, DAI will soon release a policy for how individuals, start-ups, researchers, and all others will be able work with our organisation and our members, so that it is fair and equitable for everyone.

Although this has partially been outlined in the documents, Value to a sponsor partner or donor and Opportunities for researchers, partners sponsors and associates, both updated in 2018, it is apparent they are unclear.

Thank you

The board sincerely hopes this rationalization and suspension of four services is temporary, and that some will be reactivated in the future, and we thank you for supporting us as we streamline our operations to ensure our core activity, which is peer to peer member support is sustainable.

DAI’s incredible work and willingness to support and work with others, without reciprocity has been a major contributor to the need to make these very difficult decisions. Hence, we really hope that moving forward, the many organisations and individuals DAI has so actively promoted and supported for the last eight+ years, will consider reciprocating and partnering with us in the future.

“Nothing about us, without us.”

Cheryl Day
Acting Chair
On behalf of the Board of Directors
Dementia Alliance International (DAI)

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Reminder: Effective immediately

DAI will continue to provide the following services:

  1. Free membership for people living with any type of dementia.
  2. Weekly Peer-to-peer support groups for DAI members (no cost to members).
  3. Provide member and data base communications via regular blogs on the website, not through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its CPA to perform the annual financial reporting and required IRS related paperwork.
  6. Retain the award-winning DAI YouTube channel.
  7. Retain the DAI website, which is currently being updated.
  8. Retain the DAI branded Facebook, LinkedIn and Twitter social media pages.
  9. Finally, the Environmental Design Special Interest Group (ED-SiG) will continue to be led by Emily Ong, from Singapore

DAI Human Rights Advocacy

The global human rights work we currently do will continue, although DAI will need to fund an external partner or expert for this work to continue. Kate Swaffer will continue in her role as interim human rights advisor until the AGM in June, while the board decides on its long-term future direction. DAI will continue to work with the WHO and UN, will retain its ECOSOC status at the United Nations, and its Observer status with the International Disability Alliance.

DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars
  2. Monthly virtual Cafe Le Brain
  3. Twice monthly Brain Health Hub Zoom Meetings
  4. The annual WRAD event

Furthermore, to reduce costs, DAI will cease the monthly newsletter and other mailings, and blogs on the DAI website will be used to communicate to members instead. We hope the increased activity on our social media pages will fill any potential communication gaps.

Please note therefore, that all future official and other communications will be through the website as a blog; this mean you need you to subscribe to them to receive our news and any other communications. 

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

Media Release: DAI to suspend some free services

Dear friends and colleagues,

The DAI Board met at a special board meeting on March 25/26, 2022 as we saw the need for a thorough internal review of our services.  This was brought about by the identified strained resources we have, to support the current operations.

We certainly appreciate the unusual world we are living in at the moment and DAI, like many other Not For Profit and Charitable organisations are competing for volunteers and funding to remain viable and sustainable.

We assure you that the DAI Mission and Values were at the forefront of our thinking; and we value the volunteers and supporters around the world who continue to support us; thank you.

This media release is to advise you that following the review, the Board has made the very difficult, but necessary decision to reduce the current services provided by DAI until further review. Our hope, is that we can build up our volunteer base once again and continue to provide amazing resources to ensure “Nothing about us, without us.”

The priority of the special board meeting was to discuss the following two options about the services, sustainability, and future of DAI.

OPTION 1:

  • Wind up the affairs of DAI, and
  • Cancel charity status and disperse funds.

OPTION 2:

  • Revert to peer-to-peer support groups only,
  • Drop all other work, including e-newsletters, webinars, cafe le brain, and brain health hub meetings,
  • Replace newsletters with more activity on social media, and
  • Stop or scale back blog posts.

Following this meeting, the board has unanimously made the following decisions.

Effective immediately, DAI will continue to provide the following services:

  1. Free membership for people living with any type of dementia.
  2. Weekly Peer-to-peer support groups for DAI members (no cost to members).
  3. Provide member and data base communications via regular blogs on the website, rather than through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its registered accountant to perform the annual financial reporting and required IRS related paperwork.
  6. Retain the award-winning DAI YouTube channel.
  7. Retain the DAI website, which is currently being updated.
  8. Retain the DAI branded Facebook, LinkedIn, and Twitter social media pages.
  9. Finally, the Environmental Design Special Interest Group (ED-SiG) will continue to be led by Emily Ong, from Singapore

Effective immediately, DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars.
  2. Monthly Cafe Le Brain.
  3. Twice monthly Brain Health Hub Zoom Meetings.
  4. Annual World Rocks Against Dementia (WRAD) event.

We looked at a number of ways to work ‘smarter’ so we can continue to provide the same level of communications, but in a different way and came up with these options.

To reduce costs, DAI will cease the monthly newsletter and other mailings, which will be replaced entirely by blogs on the DAI website to communicate to everyone, including members. We hope increased activity on DAI social media will help fill any potential communication gaps.

Please note therefore, that all future official e-news and other communications will be through the website as a blog, which will mean you need to subscribe to them to receive our news and other communications.

The global human rights work we currently do will continue, although DAI will need to fund an external partner or expert for this work to continue. Kate Swaffer will continue in her role as interim human rights advisor until the AGM in June 2022, while the board decides on its long-term future direction. DAI will also retain its ECOSOC status at the United Nations, and Observer status with the International Disability Alliance.

Detailed below is a brief explanation of why DAI has been forced to face these changes, due primarily to the following set of unique and difficult challenges.

  1. DAI members who all live with dementia are often willing to volunteer, but also have significant time constraints as they are also tackle tackling the daily challenges of living with dementia.
  2. Significant demand on volunteers around the world.
  3. DAI has been asked and had the opportunity many times over the last 8 years to support researchers, individuals, and organisations with their grant applications; we are working on being appropriately included in the work and funded in the projects.

Since mid 2015, DAI has depended on strategic partners and donations to fund its operations; before that, board members self funded it.

We are very grateful that in mid 2015, ADI became DAI’s first strategic partner. In November 2018, Dementia Australia became a major donor; the following year, DA became our second strategic partner.

It takes time to build up strategic partners and donors to remain sustainable in our current format, and to have paid staff and financial resources that can be used to hire additional staff to support our organisation.

Unfortunately, the lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.

The board sincerely hopes that these changes are temporary, and that some of our services will be reactivated in the future.

DAI continues to be an amazing, life-giving organisation that provides a steppingstone for people more newly diagnosed with dementia to ‘get back to living’, which is truly powerful work, and we will continue to do this.

We thank you in anticipation of your support us as we streamline our operations to ensure our core activity continues, which is to ensure peer to peer member support is always sustainable.

Finally, we will send another email later this week, with a more detailed explanation of why these changes have had to be made at this time.

“Nothing about us, without us.”

Yours sincerely,

Cheryl and Alister

Cheryl Day/Alister Robertson
Acting Chair/Chair (on leave)
On behalf of the Board of Directors
Dementia Alliance International

World Day of Social Justice 2022

February 20 is World Day of Social Justice, a commemorative event that has been held since its first proclamation by the United Nations General Assembly in 2007. The underlying principle is to promote gender equality and social justice for all as stated in Our Common Agenda.

Social justice is closely aligned with human rights and is about fairness – ensuring equality for all people.

The major social injustices affecting the world today:

  • Racial Inequality: Systemic racism in societies around the world has resulted in significant inequalities: job opportunities, housing, healthcare, and legal representation are all affected.
  • Gender Inequality: Discrimination based on gender affects education, jobs, and healthcare. Women and girls are also vulnerable to human trafficking and intimate partner violence.
  • LGBT Inequality: The lesbian, gay, bisexual and transgender communities are uniquely vulnerable to violence and discrimination. Discrimination impacts legal protections, marriage equality, healthcare, and job opportunities.
  • Economic Inequality: According to the World Bank, over 700 million people live on less than $1.90 per day. That’s the line for “extreme poverty”. In the wake of the COVID-19 pandemic, the World Bank estimates that between 40-60 million could slip below the poverty line.
  • Unequal Access to Education: While education is the key to unlocking better job and income opportunities, accessing good education is very challenging for certain populations. In areas like south-eastern Asia and sub-Saharan Africa, wide disparities still exist.
  • Climate Injustice: Those who are disproportionately impacted by climate change are countries which have the lowest carbon-emission.

The theme of World Day of Social Justice 2022 is Achieving Social Justice through Formal Employment, and it focuses on employment resources and opportunities as a prerequisite in reducing poverty and inequality.

At Dementia Alliance International #DAI, we observe World Day of Social Justice because social injustice is rampant when it comes to people living with dementia and their families. As a global organization, DAI has been raising its voice against social injustice and advocating #HumanRightsForAll and United Nations Convention on the Rights of Person with Disabilities #CRPD.

There is a strong biased assumption that post diagnosis employment is not possible for people with cognitive impairments, even those of us with mild dementia. In the workplace, individuals are seen as incompetent workers and regarded as a liability rather than an asset to the organization.

One of the harmful myths of dementia, is an automatic assumption of incapacity which is made early and without any kind of evidence-based assessment of the person’s capacity, knowledge, and ability for continued employment in a specific role. As a result, it is not unusual for these individuals to be made redundant or dismissed for incompetence.

On contrary, there are many individuals and advocates living with dementia who have taken up voluntary or part-time work when provided with accessibility to resources and appropriate support. These examples clearly demonstrated that people living with dementia had the capacity to lead and perform, knowledge to share and ability to remain in the workforce for a duration of time after their diagnosis. DAI is a living proof of such example where people living with dementia lead and manage the organization on day-to-day basis and provide support services to their peers with support from few volunteers.

Continuing employment after post-diagnosis is essential and beneficial because the occupational role not only provide financial satisfaction but more importantly it helps to reduce the risk of depression, prevent loss of identity and self-worth, and loss of social networks. Hence, individuals living with mild dementia must be supported in the workplace through reasonable adjustments and accommodation while they adjust to their diagnosis and make plans to retire when they feel it is time to do so. Continued post-diagnostic employment can be realized when i) healthcare professionals stop ‘Prescribed Disengagement’; ii) employers see it is their responsibility to support workers diagnosed with cognitive impairments to remain in the workforce; and iii) the workplace has an inclusive culture that respects diverse range of ability.

You can read more about “Dementia and Employment: Give us a chance to remain employed” published on the DAI blog on February 13 2021.

REMINDERS OF UPCOMING EVENTS:

1. The 2022 DAI Global Rally Summit, Age With Rights! DAI is hosting a Live Facebook event as part of this rally, which you can join  us here. Read more information about it on our blog here.

Registration is not required; simply join us on the DAI Facebook page for this live event at the times listed below.

Thursday, 3 Mar 2022

  • 2:00 pm PST
  • 3:00 pm MST
  • 4:00 pm CST
  • 5:00 pm EST
  • 10:00 pm GMT

Friday, 4 Mar 2022

  • 6:00 am SGT/AWST
  • 8:00 am AEST
  • 8:30 am ACDT
  • 9:00 am AEDT
  • 12:00 noon NZDT

2. The Global Alliance for the Rights of Older Persons is also hosting a webinar on the 3rd March from 10:00-11:00 ET / 16:00-17:00 CET. There will be interpretation into Spanish, and is hosted by the IFA, and supported by the Soroptimist International. The Summit will showcase the campaigning that is taking place around the world for older people’s rights as part of the Age With Rights Global Rally ahead of the 12th UN Open-Ended Working Group on Ageing session. Click here to register. Click here to download the flyer.

3. Save the date for the next DAI “Meeting Of The Minds” Webinar:  My Life, My Goals: a self-help guide for people living with dementia, by Professor Linda Clare. Registration link and other details coming soon.

4. The 2022 Regional Forum on Sustainable Development for the UNECE region. The deadline for registrations is 18 March 2022, 23:59 (CET). Sessions opened for registration are:

  • 6-7 April 2022: Hybrid plenary sessions of the Regional Forum.
  • 6-7 April 2022: Hybrid peer learning sessions clustered around five SDGs: SDG 4 – Quality education, SDG 5 – Gender Equality, SDG 14 – Life below water, SDG 15 – Life on land, SDG 17 – Partnerships for the goals.

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Research article on Lifespace by Dr Jacki Liddle

How big is your lifespace? How might it reflect and affect health, wellbeing and participation.

By Dr Jacki Liddle, University of Queensland

Many things may affect your ability to move from place to place – and be actively involved in your community, nation and the world! We have certainly seen this over the last 2 years. There is a body of research that focuses on monitoring people’s mobility in their community, the reasons for constrictions and the outcomes related to this.

What is lifespace?

Coming out of 1970s gerontology (the study of ageing), lifespace is a concept that describes the geographic area in which we live and conduct our activities. Originally this was conceptualised as circles, surrounding a person, extending from their bedroom, into other rooms, then outside, into the community and further afield. Since then it has been converted to scores, questionnaires and maps. Basically, it measures how often you leave home (or a room), how far you go, and your patterns of travel. People might be asked to recall, keep diaries, or more recently, carry a phone or GPS device.

(From Liddle et al 2016, showing a participant’s lifespace as a heatmap from GPS information. Please note the location has been changed)

What does lifespace reflect?

Being able to be mobile in your community relies on a number of things working well.

At the person level, your body functioning affects mobility –

  • being able to perceive and interact with your environment,
  • being able to mobilise and coordinate your body parts (without too much pain),
  • and being able to plan, and organise travel,
  • feel motivated and have energy
  • and respond to things as you move

– all affect mobility (along with many more things). But there is more to it than that.

Your community mobility is strongly affected by your environment – this includes things like a home where you can access outside, suitable walking paths (terrain, surfaces, handrails), accessible transportation, weather and conditions (temperature, storms, pollution levels). Environments also can support mobility through signage, appropriate lighting levels and supports for finding your way, places for resting out of the weather, and an overall feeling of being safe. Beyond the physical environment – mobility is shaped by the social environment and infrastructure – social supports, funding for services and transport, and suitable meaningful destinations. People also often need a reason to be mobile – why you are going, what you are doing, who you are with.

So a restriction in lifespace may reflect a change or mismatch between the person and their environment. It may be temporary (like having a broken leg, having a lockdown, or experiencing extreme weather), or it may be more permanent. Changes to body functioning, may require rehabilitation, changes to the environment and supports or both. Changes to usual patterns of community mobility (e.g. retiring from driving) may need specific supports and adjustment to protect lifespace.

What is the impact of restricted lifespace?

Everyone has their own preferred patterns of lifespace – so there is not one optimal amount. However, large population-based studies have indicated that maintaining lifespace (or recovering it after a constriction) may have an impact on future health, cognition, wellbeing and participation, as well as access to essential services, like healthcare. We do need to understand a lot more things about lifespace – but it does seem to both both reflect and affect health and wellbeing. For this reason, it might be helpful to keep track of your lifespace, and anything that might be a barrier to you maintaining it.

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References*

Baker, P. S., Bodner, E. V., & Allman, R. M. (2003). Measuring life‐space mobility in community‐dwelling older adults. Journal of the American Geriatrics Society51(11), 1610-1614.

De Silva, N. A., Gregory, M. A., Venkateshan, S. S., Verschoor, C. P., & Kuspinar, A. (2019). Examining the association between life-space mobility and cognitive function in older adults: a systematic review. Journal of aging research2019.

James, B. D., Boyle, P. A., Buchman, A. S., Barnes, L. L., & Bennett, D. A. (2011). Life space and risk of Alzheimer disease, mild cognitive impairment, and cognitive decline in old age. The American Journal of Geriatric Psychiatry, 19(11), 961–969.  https://doi.org/10.1097/JGP.0b013e318211c219.

Liddle, J., Ireland, D., McBride, S. J., Brauer, S. G., Hall, L. M., Ding, H., … & Chenery, H. J. (2014). Measuring the lifespace of people with Parkinson’s disease using smartphones: proof of principle. JMIR mHealth and uHealth2(1), e2799. https://mhealth.jmir.org/2014/1/e13

Liddle, Jacki; Ireland, David; Harrison, Fleur; Gustafsson, Louise; Brauer, Sandy; Lamont, Robyn; Scott, Theresa; Pachana, Nancy; Sachdev, Perminder; Brodaty, Henry. Measuring the importance of getting out and about. Australian Journal of Dementia Care. 2016; 5(5):54-56.

Liddle, J., Ireland, D., Krysinska, K., Harrison, F., Lamont, R., Karunanithi, M., … & Brodaty, H. (2021). Lifespace metrics of older adults with mild cognitive impairment and dementia recorded via geolocation data. Australasian Journal on Ageing.

* if you would like to access the references, please contact the author here.

 

 

 

Show your Support this Giving Tuesday

Tuesday November 30, 2021 is the 10th #GivingTuesday, a global generosity movement that encourages people everywhere to do good for others in need of help. It started as a simple fundraiser idea in 2012 between the 92nd Street Y in New York and the United Nations Foundation and has become a worldwide charitable campaign.

Our story:

8 years ago, a group of 8 individuals living with dementia from 3 countries came together with the need to have one strong voice, and to provide each other, and others living with dementia, advocacy and support. The aim was to bring a community of people living with dementia together to urge the government, private sector, and medical professionals to listen to their concerns, to provide better support, and to work together to address this urgent global crisis.

Every 3 seconds, someone in the world is diagnosed with dementia, and currently there is an estimated 55 million people, who are not being provided with adequate, if any, support. They are advised to get their end of life affairs in order, and advised that nothing can be done.

They are profoundly stigmatized and discriminated against, losing their right to co-exist and co-participate in their community.

When Dementia Alliance International (DAI) peer-to-peer (P2P) support groups were set up almost 8 years ago, they brought hope and joy to many who had not laughed and spoken since their diagnosis. This continues today, as new members of DAI continue to report DAI gives them HOPE.

And this would not have been made possible without the kindhearted supporters like you who showed up and gifted their time and donation to bring a new life of hope to the members.

Because of acts of kindness and generosity, DAI can continue to provide online peer to peer support groups and other activities for the members free of charge in 49 countries and counting.

Because of that, members of DAI are able to look forward to a new DAI website that is easier to navigate. Until then, DAI needs supporters like you to help to make these services remain available to our steadily increasing number of members from around the world.

Give people living with dementia a chance to regain hope for a future. Help DAI, an organization by and for people living with dementia to improve their quality of life.

Today, on #GivingTuesday, we share this fundraising campaign for Dementia Alliance International. Make a gift of generosity today.

How you can help:

  1. Make a gift to DAI
    Every gift matters equally. Give what you can, when you can. Give once, or set up a monthly donation. It is entirely up to you. You can donate easily and safely here.
  2. Tell your contacts about #GivingTuesdayDAI
    In conversation, by email, on social media… it is your choice. Let them know about the day, initiate a conversation about what matters to themand how they can help bring about positive change for people living with a diagnosis of dementia.
  3. Partner with DAI. Encourage others to do the same.
    Every little bit helps. When you talk about us, donate to us, share our resources, you add your voice to a growing chorus of people with dementia whose vision is a “A World where all people are valued and included.” Your words, your actions, your gifts have power, they help strengthen us to fulfil our mission.
DONATE TO DAI TODAY

100% of your donations go directly to support people living with dementia and their families. We have no paid staff, and no physical offices.

Thank  you.

Books by people with dementia

For our final day of Dementia Awareness Month, and to further celebrate the voices of people with dementia, two DAI members, Christine Thelker and Kate Swaffer have created a list of books written and published by people with dementia.

In contrast to the vast number of books written by family members or care partners, we could only find about 3 dozen written by people with dementia. However,  they are a unique and honest view into the real lives, of real people diagnosed with dementia.

If you know any that have been missed, please let us know!

Listed in chronological order, to highlight how long people with dementia have been speaking out:

My Journey into Alzheimer’s Disease, by Robert Davis, 1989

Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, by Diana Friel McGowin, 1994

Losing my Mind: An Intimate Look at Life with Alzheimer’s, by Thomas DeBaggio, 2002

When it Gets Dark: An Enlightened Reflection on Life with Alzheimer’s, by Thomas DeBaggio, 2003

Just Love Me: My Life Turned Upside Down by Alzheimer’s, byJeanne Lee, 2003

Dancing with Dementia: My Story of Living Positively with Dementia, by Christine Bryden, 2005

Alzheimer’s from the Inside Out, by Dr Richard Taylor, 2006

Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, by Diana Friel McGowen, 2011

Silent Voices: My Battle With Alzheimers Rages on, by Norman McNamara, 2011

Who will I be when I die? , by Christine Bryden, 2012

From the Corner Office to Alzheimer’s, by Michael Ellenbogen, 2013

On Pluto: Inside the Mind of Alzheimer’s: 2nd Edition, by Greg O’Brien, (1st Edn 2014, 2nd Edn 2018)

Nothing About Us, Without Us!: 20 Years of Dementia Advocacy, by Christine Bryden, 2015

Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46, Christine Bryden, 2015

What the hell happened to my brain?: Living Beyond Dementia, by Kate Swaffer, 2016

Diagnosed With Alzheimers Or Another Dementia: A practical guide to what’s next for people living with dementia, their families and care partners, by Kate Swaffer & Lee-Fay Low, 2016

Love Life Loss – A Roller Coaster of Poetry Volume 2: Days with Dementia, by Kate Swaffer, 2016

Dementia Activist: Fighting for Our Rights, by Helga Rohra, 2016

Five minutes of amazing: mjourney through dementia, by Chris Graham, 2016

The Lewy Body Soldier: The Lewy Body Soldier, by Norman McNamara, 2016

Walk the walk, Talk the talk, by Keith Oliver, 2016

Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s, B. Smith, Dan Gasby, et al., 2016

The Dancing Dementia Dude: An Urgent Conversation Between Dementia Folks, Care Partners and God, Dallas Dixon, 2017

Memory’s Last Breath: Field Notes on My Dementia, by Gerda Saunders, 2017

“Was zum Teufel geschieht in meinem Hirn?”: Ein Leben jenseits der Demenz, by Kate Swaffer, 2017

Dancing with Elephants: Mindfulness Training For Those Living With Dementia, Chronic Illness or an Aging Brain (How to Die Smiling Book 1), by Jarem Sawatsky, 2017

Somebody I Used to Know: A Memoir, by Wendy Mitchell, 2018

Will I Still Be Me?: Finding a Continuing Sense of Self in the Lived Experience of Dementia, Christine Bryden, 2018

A Doctor’s Personal Journey of Hope, by Dr Jennifer Bute, 2018

Talking Sense: Living with Sensory Changes and Dementia, by Agnes Houston, 2018

Dear Alzheimer’s: A Diary of Living with Dementia, by Keith Oliver, 2019

Dementia Strategies, Tips, and Personal Stories, by Myrna Norman, 2020

For this I am Grateful: Living well with dementia, by Christine Thelker, 2020

Slow Puncture: Living Well With Dementia, by Peter Berry, 2020

Sean’s Story: My five tips for living with frontotemporal dementia, by Sean Kelly, 2020

Dignity & Dementia: Carpe Diem: My journals of living with dementia, by Mary Beth Wighton, 2021

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There are now many books which include chapters authored by people with dementia, e.g.

Dementia Rehabilitation, 1st Edition: Evidence-Based Interventions and Clinical Recommendations, Edited by Lee-Fay Low & Kate Laver, chapter 1, Rehabilitation: a human right for everyone, by Kate Swaffer.

The Routley Handbook of Disbility Activism, Edited by Maria Berghs, Tsitsi Chataika, Yahya El-Lahib, Kudakwashe Dube, chapter 10, Dementia as a Disability, by DAI members, Kate Swaffer, Brian LeBlanc, Peter Mittler. This book was the 2019 Outstanding Handbook – Social Sciences – Award Winner.

 

 

 

 

 

Nothing about us without us

We are pleased to share this reflection on the important messages we have heard during the 2021 World Alzheimer’s Month / Dementia Awareness Month, written by DAI board member, Julie Hayden from the UK.
Thank you Julie.
As we reflect on Dementia Awareness Month 2021, lets not forget the important messages we have received from each nation and the numerous organisations which have taken part.
Those messages include:
  • Dementia can affect anyone from any age bracket, cultural background or social standing. Few people living with dementia today ever thought it would come to them. Please consider how you would wish to be treated.
  • To be Dementia Friendly is fine, but being Dementia Inclusive is better. Involving us in all aspects of life, so affording us the same Rights that are enjoyed by others.
  • Showing love, respect and consideration whatever our level of dementia and however challenging our symptoms may be to you. We remain whole persons. We do not fade away or disappear, we just often become harder to reach, but it’s always worth the effort of doing so.
  • At the centre of all plans for us and discussions about us, please remember it is vital that we are part of that dialogue.
Let’s continue to work together.
So much more can be achieved if we develop a team approach.
No one organisation can do it alone and no piece of work has value unless it stems from the lived experience of people who themselves are diagnosed wth dementia.

The DAI New Membership Criteria

Dementia Alliance International (DAI) continues with our series of blogs and news as part of our Dementia Awareness Month activities, and today, we are pleased to announce our newly adopted membership criteria.

When DAI launched on 1 January 2014, our membership criteria explicitly stated that to qualify for membership, the applicant needed to have a medically confirmed diagnosis of any type of dementia, which excluded members with a diagnosis of Mild Cognitive Impairment (MCI).

As with all health conditions, research changes things such as the diagostic criteria for a condition, as well as the clinical practice guidelines. Over a period of more than five years, the board and membership has discussed changing this criteria, and after much consideration, and years of reviewing it with dementia experts, academics and clinicians, we have finally moved to update a By Laws in line with the latest in terms of a diagnosis of dementa, as well as to  increase inclusion.

Many experts had previously advised DAI that MCI does not always lead to dementia (some still say, as few as 20%), and hence this group did not meet the original DAI membership criteria. However, others had recommended DAI should have allowed their membership regardless of this, as no-one else is providing support for people in the diagnostic process or with MCI.  We always wanteded DAI to be of, by and for people with dmentia, and also to ensure that people without dementia were not able to take over, as had happened to other self-advocacy groups.

Our motto is still, “Nothing about us, without us”.

On September 14/15, 2021, the DAI board unanimously voted to change ARTICLE II – MEMBERSHIP Section 1 of our By Laws to the following:

ARTICLE II – MEMBERSHIP Section 1 of the DAI By Laws now says:  

Section 1 – Eligibility for membership: Request for membership shall be open to any person living with dementia that supports the Vision and Mission of the organization.

Membership of Dementia Alliance International is free and is open and exclusive to anyone with a medical diagnosis of any type of dementia – Mild or Major Neurodegenerative Disorder.

Membership is granted after the completion and receipt of the electronically submitted on-line request or a written membership request provided to an active member.

Membership may be denied or revoked at any time if it is determined that an individual presents potential risk to others in the organization or to the overall health and wellbeing of the organization itself and the people it serves.

This includes but is not limited to breaches of the member Code of Conduct, and physical and mental hazards such as violence, anxiety and relived trauma [this may include revoking or denying membership of registered sex offenders]. A majority vote of the Board is required for denial or revocation of membership.

Read or download the updated By Laws here.

Bobby Redman, who has recently resigned as a board member and as the Vice Chair of DAI for various reasons, including to take on a national role in another organisation, recently provided the DAI board with the following background and some context to assist us to make this decision.

Background to proposed review

Dementia, as a diagnosis is no longer recognised in the DSM-5, which is the diagnostic manual generally used in the USA, Australia, and New Zealand (the UK use the ICD-10). The official term is now Major or Mild Neurocognitive Disorder (ND) and is therefore a stages approach which would previously have been called early-stage dementia / late-stage dementia.

The term mild cognitive impairment (MCI) that is thrown around by doctors is not a diagnosis, but rather a symptom, think of it like pain, which is a symptom rather than a condition. People may experience some cognitive loss (mild cognitive impairment), but it is only as further deterioration occurs, that it meets criteria for mild or major ND.  

The problem is many people sit with a diagnosis of MCI for years, because too many doctors fail to recognise the difference between MCI and Mild ND, often using the term interchangeably.

If cognition continues to slip, and functioning is declining, it meets the criteria for MILD Neurocognitive Disorder, which then naturally progresses to Major ND over variable lengths of time. There is no Moderate ND and the only difference between Mild and Major ND is the severity of symptoms and the level of impact on independence in everyday activities, which as we all know should be on a sliding scale. We all experience good and bad days – some foggy, some a bit clearer; some days when we can complete activities better than other. Only a few of our DAI members would meet the criteria for Major ND, which would mean that we would be unable to function independently. Most of us whilst not meeting these criteria still require some support or strategies to be able to complete some everyday tasks; we would at this stage be diagnosed with Mild ND, with a specifier such as Alzheimer’s Disease; Frontotemporal lobar degeneration (FTD), due to multiple aetiologies (what we know as Mixed Dementia); Unspecified (what too many people sit with) etc.

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Read the DAI 2021 Global Report

NEWSFLASH: DAI GLOBAL REPORT 2021

Valuing the advocacy of people with dementia: moving dementia out of the shadows

DAI is pleased to launch a new 2021 Global Report on World Alzheimer’s Day, the outcome of some important work over the last twelve months. We engaged Dr Ellen Skladzien to do this work as she has a long career of working with people with disabilities, including people with disabilities due to dementia.

“People with dementia and care partners have the right to have a say in the policies, research and support that will impact their lives. Advocacy by people with dementia and organisations has led to increased involvement of people with dementia and their families in policy, service planning, development and research.  However there continues to be challenges in understanding what involvement should mean and how involvement can best be supported.

Our work on this paper enabled us to listen to the experiences of people with dementia and their families from across the globe about their experiences in involvement. It provides a snapshot on what is working well as well as some  of the barriers to involvement. It is clear that people with dementia and their families want to be involved in meaningful ways that make an impact and they want this involvement to be valued.”

We have added the Table of Contents as a way of quickly highlighting what is inside our publication.

Table of Contents

About Dementia Alliance International (DAI)
Acknowledgements
Introduction
Types of Involvement of People with Dementia and Care Partners
Why should people with dementia and their care partners be involved in policy, research and services?
– Involvement as a right
– Involvement which leads to better outcomes
– Involvement which brings personal benefits
Examples of International Leadership in Involvement
– UK- DEEP
– Australia- Cognitive Decline Partnership Centre (CDPC)  
– Ireland- Irish Dementia Working Group
– Scottish Dementia Working Group
– United States- Early-Stage Advisory Group
– Japan- JapanDementia Working Group
– Ontario Dementia Advisory Group (ODAG)
– European Dementia Working Group
– Alzheimers New Zealand and Alzheimers NZ Advisory Group
– Dementia Advocacy Canada (DAC)
– Taiwan Dementia Advisory Group (TADA)
What do people say about their Involvement?
Reflection on Progress to Date
Where do we want to get to? Key Principles for Supporting Involvement
Conclusions
– Appendix 1: Additional resources and practical guides on involvement
References
Endorsements

Also available to download on our website publication page.

About the author:

Dr Skladzien is an advocate for meaningful involvement of people with lived experience in research, policy and service development.  This paper was completed as independent work separate to her other roles.

Ellen is currently the CEO of Down Syndrome Australia and  is also the past Executive Manager of Policy and Research at Dementia Australia (previously Alzheimer’s Australia).  She has also been involved in the Consumer Advisory Group at the South Australian Health and Medical Research Institute.

Ellen was actively involved in setting up the Dementia Australia Dementia Advisory Group in 2013, when she was working for Alzheimer’s Australia when this committee was founded.

Suggested citation:

Skladzien, E., 2021, Valuing the advocacy of people with dementia: moving dementia out of the shadow, Dementia Alliance International.

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