Category Archives: 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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DAI Facebook event: Age With Rights 2022 Campaign

The DAI ‘Age With Rights’ Global Rally 2022

There are an estimated 55 million people diagnosed with dementia globally, and estimated 42 million who do not have a formal diagnosis. Dementia is also a major cause of disability and dependence globally, and effects women and girls more than men. In Australia, it is the leading cause of death for women.

Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle-income countries. Women carers compared to male carers, are more often unemployed due to their unpaid role; girls who are carers also often miss out on education.

Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).

This is partly why DAI is joining the Global Alliance for the Rights of Older People Age with Rights rally being held in advance of International Women’s Day this year.

This is partly why DAI joined the Global Alliance for the Rights of Older People (GAROP) ‘Age With Rights’ campaign in February 2021 to present a unified, visible presence and amplify the voices of older people and civil society organisations in the virtual 11th session of the UN Open Ended Working Group on Ageing (OEWG11) session held in April 2021.

We hope you will join our panelists Kate Swaffer, Emily Ong and Lyn Rogers for a live Facebook session on ageing with rights.

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

Check for your time here if not listed above.

The slogan was developed in close consultation with GAROP members, including Kate Swaffer, DAI’s co-founder and Human Rights Advisor who is a member of GAROP. The first month of the campaign saw the United Nations Department of Economic and Social Affairs (UNDESA) adopt the campaign’s slogan #AgeWithRights in their social media. The campaign successfully captured the lived experiences of dozens of older people globally and utilised this to boost advocacy both in OEWG11 and at the national level. The campaign continued to grow throughout 2021:

  • More than 70 advocacy videos from older and younger people worldwide posted online and shared by social media
  • “AgeWithRights” rallying cry incorporated into position statements and tweets by civil society organisations and national human rights institutions
  • Dozens of people using the #AgeWithRights” hashtag on their social media profiles
  • Invitations to discuss and showcase the campaign at various human rights forums with growing interest from many in getting involved

Goals of the Global Rally

  • Activate more advocates globally to join the movement by raising awareness of older people’s rights and a new UN convention
  • Mobilise new and existing advocates to advance local, regional, and thematic advocacy activities in support of older people’s rights and a new UN convention
  • Push forward in rallying governments to support the implementation of the Human Rights Council Resolution recommendations (A/HRC/RES/48/3) and the drafting a new UN convention (as proposed at OEWG11)

Themes

The overarching message is the important role that a new UN convention would play in strengthening the protection of older people’s rights and urging governments to support this. Linked to this, you can focus on themes that your organisation or network specialises in or has an interest in. You could choose to focus on the themes for the 12th OEWG session, which include the

  • ‘Right to work and access to the labour market’,
  • ‘Access to justice’, and the new themes of
  • ‘Economic security’ and
  • ‘Contribution of older persons to sustainable development’.

Exploring intersecting discrimination with campaigners from other areas of human rights is strongly encouraged as a way of building allies, diversifying, and reaching new audiences (example, older women, older people with disabilities, older LGBTI+ people, Age-Friendly Cities networks, etc).

Older people around the world face particular challenges in enjoying their human rights. Governments have recognised that this includes, among others, protection against violence, abuse and neglect, the right to food, housing, work, education, and health and care[1]. Older persons clearly face discrimination and negative treatment on the basis of their age[2] and this can be made worse by other forms of discrimination based on gender or disability for example.

There are very few explicit references to older people’s rights in existing international human rights treaties. These treaties do not cover all aspects of older people’s rights and are unclear about how human rights apply in older age[3]. International agreements and policy frameworks dedicated to older people and ageing, such as the Madrid International Plan of Action on Ageing, have also proven to be inadequate and incapable of protecting older people’s rights[4].

The solution we are calling for is to create an international legally-binding ‘UN convention’ on older people’s rights. A new UN convention would provide governments, service providers, businesses, civil society and older people everywhere, with the clarity and guidance we need to build a more equal society for people of all ages and ensure respect for our human rights as we age. It would result in greater accountability for and monitoring of older persons’ rights.

 

 

 

 

 

[1] A/HRC/RES/48/3 – E – A/HRC/RES/48/3 -Desktop (undocs.org)

[2] https://rightsofolderpeople.org/wp-content/uploads/2015/03/In-Our-Own-Words-2015-English.pdf

[3] https://social.un.org/ageing-working-group/documents/eleventh/OHCHR%20HROP%20working%20paper%2022%20Mar%202021.pdf

[4]https://www.ohchr.org/FR/NewsEvents/Pages/DisplayNews.aspx?NewsID=20848&LangID=F

The importance of Rehabilitation for all people with dementia

Watch our  webinar, The importance of Rehabilitation for all people with dementia,  now!

In September 2021, DAI hosted a series of four “Meeting Of The Minds” Webinars, specifically focused on rehabilitation for dementia. This was done as people with dementia have been campaigning for the full suite of rehabilitative interventions after diangosis for decades. At last, we appear to be seeing small actions towards actually achieving this basic human right, and what is deemed equal access to Universal Health Coverage.

The webinar was the final panel session of that series, with panellists Professor Lee-Fay Low, PhD, Sydney University, Dr Alexandra Rauche, from the World Health Organisation, Ms Emily Ong DAI member from Singapore, Ms Lynette Rogers, DAI member from Victoria, who lives in residential aged care, and DAI co founder Kate Swaffer who has been campagining for rehabilitation for dementia, and also for dementia to be managed as a condition causing disabilities for over a decade.

Rehabilitation helps individuals maintain and optimize independence. Historically, people with dementia have received little or no rehabilitation and the focus has been on care to replace lost function. It is now critical that health and social care professionals, service planners, policy makers, and academics embrace dementia rehabilitation.

There is a compelling case for rehabilitation for people with dementia, including the views of people with dementia and the research evidence. For each area of function, the research evidence and relevant theory is clear, and needs to be followed by practical information on clinical assessment, and delivery of therapies.

You can view the other Rehabilitation and Dementia webinars on our award winning YouTube channel here.

Since you’re here
 
 we’re asking viewers like you to support our members, by donating to our organization.

There are now more than 55 million people living with dementia, AND DAI is the global voice of people with dementia.

As the Coronavirus pandemic has caused everyone to operate in a virtual world, our work has never been more important.

Donate to or Partner with DAI today

Membership of, and services provided by Dementia Alliance International are FREE, and open to anyone with a diagnosis of any type of dementia.

If you are diagnosed with dementia you can join DAI here. 
Read our newsletters or regular blogs, by subscribing here. 

About DAI: Dementia Alliance International (DAI is a non-profit 501c3 charity of, by and for people with any type of medically confirmed dementia from around the world. We seek to represent, support, and educate others that living more positively with the condition is possible.

Research Wrap: Brain health and Physical activity


We thank Laura Garcia Diaz for our February research blog, focused on the impact of physical activity and brain health.

Let’s talk about brain health: Physical activity

By Laura Garcia Diaz

There is strong evidence that people can reduce their risk of cognitive decline by making key lifestyle changes (Livingston et al., 2020), including being physically active.

Over the past decade, there has been an increased interest in understanding the impact of physical activity on cognition. In this blog, I will provide a high-level summary of recent research that has been conducted to help us understand the possible impact of physical activity on reducing the risk of cognitive decline (i.e., prevention) and on supporting people with dementia to live well (i.e., intervention).

Before reviewing some of the literature, it is important to define what I mean by “physical activity”. Physical activity refers to any type of body movement, including recreational or leisure-time physical activity, transportation (such as cycling or walking), occupational (such as lifting things at work), household chores (for example, vacuuming and folding the laundry), play, sports or planned exercise (World Health Organization, 2015). Thus, exercise is one type of physical activity, but it is not the only way in which we can be active throughout the day.

Across all age groups, the World Health Organization recommends participating in 150 minutes of moderate-intensity aerobic physical activity per week (or 75 minutes of vigorous-intensity aerobic physical activity) (World Health Organization, 2015).

Although in this blog I will focus on the impact of physical activity on cognition, it is important to remember that physical activity can improve balance and mental health and reduce the risk of falls, thus it is recommended to participate in regular physical activity for overall well-being (Alty et al., 2020).

In 2020, Whitty and colleagues (2020) conducted a systematic review of lifestyle and psychosocial interventions that aimed to reduce cognitive decline in people at risk of dementia. In this study, a person was considered at risk of dementia if they were 50+ years old, or if they have been diagnosed with mild cognitive impairment, or experienced subjective cognitive decline (i.e., the person reports experiencing cognitive decline, but has not been diagnosed with mild cognitive impairment or another condition). For exercise interventions, the authors found:

  • Very good evidence (known as “Grade A”) that participating in aerobic exercise at least twice a week, for 16 weeks or more, may have a positive effect on global cognition in people with and without mild cognitive impairment.
  • Very good evidence that participating in 1-3 weekly activities that include cognitive and motor components(for example, dancing or dumb bell training) may improve memory or global cognition in people with mild cognitive impairment.
  • Very good evidence that participating in resistance training for four months or less may not improve cognitive outcomes in people with or without mild cognitive impairment.
  • Good evidence (known as “Grade B”) that Tai Chi sessions (initially taught by an instructor, and then continued at home for 15 weeks) may improve global cognition, memory and executive functioning in people with mild cognitive impairment. These findings were compared to stretching, toning group and education interventions which were not found to be as effective as Tai Chi.
  • Good evidence that participating in resistance training for 6 months or more may improve global functioning in people with mild cognitive impairment.

Based on these findings, to reduce cognitive decline in people at risk of dementia, the authors recommend participating in regular (at least weekly) physical activity involving aerobic or resistance exercise, with a cognitively demanding and/or creative component for at least four months. Please note that I have underline “may improve/not improve” as each person has a unique health background and even when there is very good evidence for an intervention, it will not always work for everyone. Because individual variability (for example, genetics, environment, biomarkers, etc) can influence how a person responds to physical activity, the idea of physical exercise as personalized medicine is gaining attention in dementia research (MĂŒllers et al., 2019).

Personalized medicine is an intervention approach based on individual variability. MĂŒllers and colleagues (2019) recently commented on the potential benefits that personalized preventive exercise strategies could have, recommending future research to focus on identifying individual factors that may postively or negatively interact with different exercise strategies. This would enhance our ability to recommend personalized exercise programs, overcoming the typically used “one-size-fits all” approach.

In 2019, the World Health Organization published guidelines on the risk reduction of cognitive decline and dementia (World Health Organization, 2019). Two recommendations reggarding physical activity are included in the guidelines:

  1. Physical activity is recommended for adults with normal cognition to reduce the risk of cogntive decline. The quality of evidence for this recommendation is moderate.
  2. Physical activity may be recommended for adults with mild cognitive impairment to reduce their risk of cognitive decline. The quality of evidence for this recommendation is low.

The authors of the guidelines concluded that, based on current evidence, physical activity has a small, but beneficial effect on cognition, mostly due to aerobic exercise (e.g., swimming, cycling, walking).

Despite increased research around physical activity and cognition, we still don’t know the minimum duration, frequency, type, and intensity of exercise required to improve cognition. Similarly, although there is very good evidence that physical activity may reduce the risk of cognitive decline, there is mixed evidence about the positive impact of physical activity on cognition in people already diagnosed with mild cognitive impairment or dementia.

From personal experience, engaging in physical activity (even a short 10 minute walk) tends to put me in a better mood which is why I am a proponent for trying to incorporate different forms of physical activity throughout the day. My favourite types of physical activities include yoga, walking, dancing, and swimming. I also thoroughly enjoy hula hooping! I know that it isn’t always easy to find the time or energy to engage in physical activity (especially during a cold winter day!) but I encourage you to think about ways in which you could incorporate physical activity in your daily routine.

I hope the information in this blog has been helpful, but most importantly, I hope it has inspired you to think about how you could incorporate physical activity into your daily routine. Your heart, mind and brain will thank you for it!

References

Alty, J., Farrow, M., & Lawler, K. (2020). Exercise and dementia prevention. Practical Neurology, 20, 234–240. https://doi.org/10.1136/practneurol-2019-002335

Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S., Brayne, C., Burns, A., Cohen-Mansfield, J., Cooper, C., Costafreda, S. G., Dias, A., Fox, N., Gitlin, L. N., Howard, R., Kales, H. C., KivimĂ€ki, M., Larson, E. B., Ogunniyi, A., 
 Mukadam, N. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet, 396(10248), 413–446. https://doi.org/10.1016/S0140-6736(20)30367-6

MĂŒllers, P., Taubert, M., & MĂŒller, N. G. (2019). Physical exercise as personalized medicine for dementia prevention? Frontiers in Physiology, 10(MAY), 672. https://doi.org/10.3389/FPHYS.2019.00672/BIBTEX

Whitty, E., Mansour, H., Aguirre, E., Palomo, M., Charlesworth, G., Ramjee, S., Poppe, M., Brodaty, H., Kales, H. C., Morgan-Trimmer, S., Nyman, S., Lang, I., Walters, K., Petersen, I., Wenborn, J., Minihane, A. M., Ritchie, K., Huntley, J., Walker, Z., & Cooper, C. (2020). Efficacy of lifestyle and psychosocial interventions in reducing cognitive decline in older people: Systematic review. Ageing Research Reviews, 62, 101113. https://doi.org/10.1016/J.ARR.2020.101113

World Health Organization. (2015). Global recommendations on physical activity for health. https://www.who.int/publications/i/item/9789241599979

World Health Organization. (2019). Risk reduction of cognitive decline and dementia. https://www.who.int/publications/i/item/risk-reduction-of-cognitive-decline-and-dementia

 

 

 

Stigma, by Rose Ong

Stigma, a poem by Rose Ong, an advocate living with Vascular Dementia in Canada, and founder of the weekly DAI Canadian P2P Social Support Group. Thank you Rose, for keeping this topic on the agenda.

Stigma

We had carried on a bright and cordial conversation
The kind of informal banter between new friends
Just learning about those little details of our lives that
Make us each quirky and interesting at the same time.

As we rose to return to our own sanctuary of solitude
I happen to mention that I had ‘dementia’ in order to explain
Why I no longer could drive and why I had used a walker
To get to her house, just two blocks from mine, here in Newmarket.

The shock that registered on her face was remarkably as if
I had slapped her; her jaw dropped, her eyes filled with extreme pity,
As she stammered, “
but you can talk so well,
I never would have known
 I always thought that dementia
”

I stood there and smiled as she stumbled over words of caution
And surprize, mixed together in the dreaded cocktail I call STIGMA.
Having learned to accept graciously, with patience and humility
I prepared what I would say in response to HER ‘overwhelming’ confusion.

STIGMA – I faced it often when I first became unconcerned about
The world’s perception of my condition – and began to speak openly
And honestly about how it affected my memory and anxiety levels;
The simplest tasks; counting money; following a recipe; meeting new people.

Why did I bring it up? Wouldn’t it be easier to not say anything at all?
Yes, but imagine, for a moment, having a dog who DAILY bit you in the leg and
Deeply wounded you physically and emotionally, but you merely covered
It up, never spoke of it, and denied its existence to anyone noticing your limp.

Why would a sane person do that day after day?  

Instead, I chose to uncover the depths of this crippling disease and all its
Emotional handicaps and physical disruptions and discuss it openly
With anyone who would listen. Surprized? You shouldn’t be, you should
Listen, really listen, from your heart because I’m going to change the world.

Just imagine, if every person with any type of dementia began speaking up
About their limitations without fear, from the earliest onset of the disease, Doctors would have to take notice; governments would have to find solutions
And we could eradicate STIGMA in one generation.

Are YOU ready to change the world?

Written by Rose Ong, November 11, 2021

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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 Society, 51(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 research, 2019.

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 uHealth, 2(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.

 

 

 

International Human Rights Day 2021

All human beings are born free & equal in dignity and rights.

– Article 1: Universal Declaration of Human Rights

The International Human Rights Day is observed every year on 10 December. It commemorates the day in 1948 the United Nations General Assembly adopted the Universal Declaration of Human Rights.

2021 Theme: EQUALITY – Reducing inequalities, advancing human rights

Human Rights are universal rights of every human being to be treated with dignity, respect, and fairness. This year theme for Human Rights Day focuses on how rights are the beginning of peace within societies, and a way to create a fairer society for future generations.

Unfortunately, people living with dementia are often denied their human rights through subtle and indirect discriminatory practices, making it hard to tell when treatment contravenes their rights as citizens.

A typical example would be, being coerced into doing something on the pretext of being in “their best interest” as they are diagnosed or living with dementia. At this year Alzheimer Europe Conference 2021, Patrick Ettenes from the LGBTQ+ community spoke about multiple discriminations because of his sexual orientation and living with young-onset dementia.

People living with dementia and their care partners have the right to be free from discrimination based on any grounds such as age, disability, gender, race, sexual orientation, religious beliefs, health status and those aspects directly because of their dementia.

Yet today, the fight against discrimination remains a struggle for more than 55 million people living with dementia globally.

  • The right to be free from inhuman and degrading treatment
  • The right to liberty on movement
  • The right to be free from discrimination including indirect discrimination such as unfair treatment and applying blanket policies
  • The right to respect for private life includes autonomy over their own lives, care, and treatment; participation in the community; access to and respect for private and confidential information
  • The right to respect family life includes maintaining family relationships and ongoing contact.

The human rights of people living with dementia lie at the core of Dementia Alliance International (DAI) advocacy work. In 2016, DAI launched the 1st edition of a booklet to provide a basic introduction to Human-Rights Based Approaches (HBRAs) – The Human Rights of People Living with Dementia: from Rhetoric to Reality.

The aim is to get people living with dementia to have basic knowledge of their human rights or to join forces with others to claim and hold their national dementia organization, as well as their governments, professional organizations, media and the general public, accountable and being fair in policies & service delivery, and full inclusion in civil society; “Nothing About Us, Without Us.”

Organizations, healthcare practitioners and individuals who care for people living with dementia, including informal care partners, must respect, protect and take steps that people with dementia have the right to make decisions for themselves whenever possible.

They have the right to be treated with dignity and respect, and live as independently as possible, for as long as possible.

#HumanRightsDay
#StandUp4HumanRights
#HumanRights4All

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Early Bird Registration for ADI2022 Closes soon

Dear friends and colleagues,

Following an email from ADI, we just wanted to send you a brief reminder that super early bird registration for their 35th global conference ends this Friday 10 December at 23:59 GMT. As you may already know, ADI 2022 will be taking place online and in London, UK on 8-10 June 2022.

As a hybrid event, our super early bird registration rate applies to both in-person and virtual delegates. By taking advantage of our super early bird discount, you could save up to 65% on their regular registration rates.

For those who are living with dementia, a family carer, student or living in a low- and middle-income country, there are additional reduced rates for both in-person and virtual registrations.

Bursaries for free virtual registration for people living with dementia are currently available, with additional bursaries for in-person and virtual registrants that are living with dementia, family carers and early career researchers, opening soon. A limited amount of travel bursaries will also be made available around the same time.

Contact ADI if you are interested in applying for a bursary by emailing them here: [email protected]

Under the theme of ‘New horizons in dementia: Building on hope,’ the conference will be an opportunity for the dementia community to reflect and look to the future. Leading experts will join us for presentations, debates and roundtable discussions addressing the 7 action areas of the WHO’s Global action plan on dementia, around which the programme is structured.

We look forward to you joining many of DAI’s members, and the global dementia community in London and online!

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Young onset dementia: identifying the signs and diagnosis must dos

Earlier this year, one of our members, Natalie Ives from Melbourne presented at the Australian Young Onset Dementia Special Interest Group’s first webinar. Unfortunately, due to an IT issue on the day, it was not recorded well enough to upload tp YouTube, but Natalie has kindly agreed to share her full speech notes with us today.

Thank you Natalie.

Hi and welcome to todays webinar!

My name is Natalie ,I am a devoted mother of two daughters and a teacher by profession .

I am also an advocate and member for Dementia Alliance International, Dementia Australia, and the Australian Aphasia Association. Aside from these important roles, I love to travel; when we aren’t in lockdowns, as well as taking on different art projects in my spare time. 

I will now discuss how my loooooooooooooong journey began from raising my teenage  daughters , to now living with young onset dementia.

I first knew something was different with me when I would have trouble finding the right words to say, or think of them, especially when I had to fill out a form but couldn’t think of the right words.

Now this was different for me , as I had higher education and used to talk academically and writing essays relative ease.

The difficulty with my speech continued and I would start to use google or ask my girls for help when  I had word blanks.

Gradually ,I started noticing changes in my spacial awareness.

Crossing the road would sometimes be difficult as I would not be able to judge the right point of when to cross . Which my daughters would help me do. Now its funny how my girls had to tell me when to cross the road, as their mother , it was my job to teach them how, not the other way around!

This is when things started to look serious when we moved into our new home and I would start forgetting basic tasks liken how to use my phone or how to cook meals that I cooked effortlessly.

One day, my girls were out with friends during the summertimes I was home alone keeping out of the heat. I had put some eggs pan to boil to make sandwiches later , and that’s when I went blank. All I remember after that was my family friends hovering over me with the paramedics behind them.

I was told later on by family that I had called my daughters in a panic, unable to speak coherently and was not myself .I didn’t know my name or much else about myself at the time when the paramedics were looking at me.

Then I was taken to sunshine hospital and taken to a ward; the paramedics had suspected that I may have had a stroke, so the doctors looked into that .I was poked and prodded, taken up and down for scans to see what could have happened. All of this I don’t remember much, only what I have been told.

I was kept over night for supervision ,but released the following day.the doctors didn’t know what was wrong with me , and let me go with a referral to see a neurologist shortly after.

They said to come back to the hospital if anything should happen again.

unfortunately it did happen again, and I want back to hospital as instructed ,but they said nothing was wrong with me and that I wasted their time calling the ambulance. I was left in the emergency room for 6 hours and was given a script for epilepsy meds (as I found out from my GP)

My GP was supportive of me throughout the whole journey . I went to her to discuss what had happened at the hospital, and to find out if she could get some results from all the tests.

She called and found out that day I went to the hospital that first timer had brain swelling and was not told about it .

After all this all this, I felt alone. I felt. I wasn’t being Hurd or trusted by all these people who were supposed to help.even they didn’t believe at the time . Some of the doctors needed a course in sympathy  and effective communication with human beings .

Terms such as migraines and anxiety were thrown around by the doctors as an easy way of explaining what was wrong with me , since they didn’t know .the neurologist from before said I had mild cognitive impairment and that I should see a nuropsych .from that nothing was concrete .

I was referred to see a psychologist .

If that wasn’t enough the psychologist told me I shouldn’t be there as I wasn’t dealing with mental health issues.

I was left with no where to go 

I had to search by my self for a solution 

I went back to my GP to discuss all of the things that had happened, which was a wise move as she is a proactive doctor . 

I was now being looked after a medical profession who believed me and wanted to help.

The diagnosis of mild cognitive impairment was a umbrella term for dementia, or young onset in my case. A friend of mine with the same condition suggested I contact Dementia Australia ,which I am here with today. I have now been with them since 2019 and now I’m involved with Dementia Alliance International .

I’ve been able to find support I needed through the friendships I have built with people like me who have had a lived experience with dementia.

Recently on my journey I have been diagnosed with my speech pathologist with primary progressive aphasia ,which she said was quite clear from the initial phone call.

All these diagnoses have helped me understand what is going on with me.i finally feel herd and some of my concerns have been validated .which has  reduced my stress heaps .

This journey has been hard , but with the support of my family and friends; a few special doctors; dementia Australia and dementia alliance international ,I am able to embrace my new life living with dementia and aphasia .

From my lived experience, I have a want for change. I want other people who will go through what I have in the future to be supported by the medical community. Dementia and other related issues aren’t taught to doctors of medicine.i believe there needs to be education on these issues within the medical community, so others like me who had no idea what was wrong with them can feel heard and supported.

Please support more people like Natalie who live with dementia by donating to DAI today.

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International Day of People with Disability 2021

The International Day of People with Disability #IDPwD is held on 3 December every year, and is a United Nations observance day aimed at increasing public awareness, understanding and acceptance of all people with any type of disability.

Each year the UN announces a theme to observe for International Day of People with Disability, which provides an overarching focus on how society can strive for inclusivity through the removal of physical, technological and attitudinal barriers for people with disability. This has been occurring since 1992 when the General Assembly announced 3 December as the International Day of Disabled Persons.

The annual observance of the International Day of Persons with Disabilities was proclaimed in 1992 by the United Nations General Assembly. It aims to promote the rights, quality of life and well-being of persons with disabilities and to increase awareness of their situation in every aspect of political, social, economic, and cultural life. This year, our past Chair and CEO, and co-founder of DAI, Kate Swaffer writes about why she believes it is critical to manage and supporting dementia as a disability. Thank you Kate.

The Dementia Alliance International (DAI) membership joins the rest of the world on Friday 3rd December 2021 to observe the International Day of Persons with Disabilities. The theme this year is ‘Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world’.

Dementia is a condition causing disabilities.

During this years celebration of people with disabilities, the 2021 theme is ‘Fighting for rights in the post-COVID era.”, and  we are observing the challenges, barriers and opportunities for people who live with disabilities, in the context of a global pandemic.

My hope for this UN Observance Day is that dementia is a condition causing disabilities will be embedded into policy and practice everywhere. We must fight for this right, and interestingly, the covid pandemic has not only highlighted our experience of islation, discrimination and stigma, it has also highlighted how many of our rights are being denied.

Not to treat dementia as a condition causing acquired cognitive and other disabilities, is a major barrier to improving quality of life and reducing stigma and isolaton. To do so, is also an excellent opportunity to create real change.

As I continue to advocate about my continuing concerns of the lack of dementia being well recognised as a condition causing disability in academia, in policy and in service provision, I have to work har don retaining HOPE, which  members tell us joining DAI also gives them.

This is especially so, when for example, a research project is specifically concerning post diagnostic care, support and services, or quality of life for people living with dementia.

Since my own diagnosis of a younger onset dementia 13 years ago, I am becoming increasingly distessed by the lack of recognition of dementia as a disability and lack of proactive support for the more than 55 million people with dementia to live with more hope, and to live more independently for longer. 

People newly diagnosed with dementia already have their hope taken away at the time of diagnosis, so to have it taken away again (repeatedly) due to others refusing to accept that dementia is a condition causing cognitive and other disabilities, is systematically denying us proactive disability support at the time of diagnosis and takes away more hope of living positively with a diagnosis of any type or cause of dementia.

Having been advised by every professional working in dementia (except my neurologist) to ‘go home, get my end of life affairs in order, give up work and give up study
’ and even ‘to get acquainted with aged care so I would get used to it’, it is curious to personally know so many people with dementia all around the globe who have lived many years, some even decades, beyond the projected life span they were given at the time of their own diagnoses, and many of these people say it is mostly due to managing dementia as a disability. 

Thankfully my university taught me to see the symptoms of dementia as disabilities and provided me with disability assessment and then very proactive disability support to keep living my own life, not too long after diagnosis. Of course, I did not especially like accepting another seemingly negative D-word. Accepting I had a diagnosis of dementia, and the stigma and discrimination due to the label of dementia was bad enough but accepting dementia as a disability initially added to my misery. 

However, this is a critical step that was hugely important in my ability to live more positively – and importantly, more independently – with younger onset dementia. 

  • Dementia is listed as a major cause of disabilityand dependence on the WHO website 
  • In 2010, the World Health Organisation launched the updated version of the WHO DisabilityAssessment Schedule (WHODAS 2.0), the internal classification of functioning, disability and health, and at the same time stated on their website under Dementia Facts, that dementia is a condition which is the leading cause of disability and dependence. (It now says a major cause)
  • People with Younger Onset Dementia (YOD) in Australia now receive services via the NDIS (a government funded disabilityservice)
  • Many universities globally now see and support people with dementia as people with acquired disabilities, following the lead of the University of South Australia, who to my knowledge, were the first to do this for a person with dementia after my diagnosis
  • It is recognised by the CRPD Committee and the Special Rapporteur on the Rights of Persons with Disabilities as a condition causing disabilities
  • The International Disability Alliance accepted DAI as an Observer member in 2016, as they also now recognise dementia as a condition causing acquired cognitive (and other) disabilities
  • The WHO re-categorised it in 2017, as a condition causing cognitive disabilities (it had been listed under psychosocial disabilities before then).

If we ignored something as important as this in any other health space, everyone would be advocating for change. 

Whilst it may be unpleasant accepting a second D-word – that dementia causes disabilities is a reality and being advised this soon after a diagnosis potentially allows many more people to be distressed about their diagnosis for a shorter period, and to become more proactive about their diagnosis by actively seek disability support. 

Everyone has the right to knowledge, and to appropriate care and support.

Everyone has the right to be told that dementia causes disabilities. 

Following stroke, people are advised of their ‘residual (and other) disabilities’ and almost immediately offered rehabilitation and other support to live with them. That is not easy to accept either, but it is necessary to ensure the best outcomes and highest quality of life for someone after a stroke. 

If a university can provide disability assessment and disability support for a person diagnosed with dementia to continue living – why then, is it so hard to by everyone else? I believe it is critical if we are ever to improve post diagnostic experiences for people more newly diagnosed with dementia.

Not to tell people when first diagnosed with any type of dementia, that the symptoms are progressive disabilities, goes against their most basic humna right to knowledge about their condition.

Not to,  also denies them disability assessment and support soon after diagnosis and an awareness tht for many, it may be possible to maintain independence and a higher quality of life for much longer.

It is akin to not telling a person newly diagnosed with cancer there are treatments that may – or may not – work. 

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