Category Archives: Younger Onset Dementia

Living with stigma – Day 4 #DAM2015

For Day 4 of Dementia Awareness Month 2015, we are posting a short video directed by which is part of The Alzheimer Society of Ireland’s campaign to help stamp out the stigma of dementia, Learn, Listen, Link – Forget the Stigma. 

You can sign their pledge here: http://alzheimer.ie/Get-Involved/Camp…

Dementia is selfish, by Susan Suchan

Screen Shot 2015-12-24 at 11.28.42 amA couple of weeks ago during one of our Thursday weekly online “Richards Thursday Support Group”, I was interested in a comment made by one of our dear members Susan Suchan, about dementia being selfish.

At the time, I asked Susan if she would write about it and she then sent me the article below. I then asked if we could share it, and she replied saying: “Of course, feel free to use it  and I hope it can open a discussion or at least thoughts for others”, giving us permission to publish it on our weekly blog here to our dementia family (DAI members) and supporters.

Thank you Susan.

“I am told by my children and my family, how giving and generous a woman and mother I have always been. I am flattered and mystified. I now search my heart and soul for what that looked like.

I have been unemployed, outside of the home for I believe 3 years now, my children have children of their own and my world as I once knew it is much different than I had ever imagined it would be.

I have never been one to sit still for too long, so after finally coming to terms with the inability to properly keep my business running, I have moved in with my sister and brother-in-law.

I have been busy reinventing my life and as I do this, I find that my new friend are those living with a dementia diagnosis, just like me. I am satisfied and inspired by the abilities I hear and see coming from my new friends. I want to be strong and brave, forward thinking and as inspiring as they. I busy myself with new projects for a world that can be more effective for those of us living with a chronic disability.

All of this is true is what keeps me moving forward, the hopes that with our combined brilliant minds, we will set the stage for change. And then I have trouble remembering to show up for a chat group, remembering names of what are familiar faces and I am reminded that dementia likes to take it’s fair share of my time too. Far too much time in my opinion!

I with my 5 lovely grandchildren are kept short, so grandma doesn’t get overwhelmed and confused, possibly even a bit cranky. Dementia dictates how long my visits are. Organizing a family dinner, preparing a meal, dementia has selfishly borrowed my skills as well as my sense of smell and taste. I don’t remember birthdays, holidays or even how old I am. Dementia is keeping that last bit of information, safely tucked away from me!

My home has always been open to friends and family, filled with music, impromptu meals and sleep overs by the grandkids. I would give you the shirt off my back if that’s what you needed. These ideas have been robbed by dementia. Some days, I feel more apt, more aware of the life I aspire to and I thank dementia. Thank you dementia for thinking of me less. But because is a selfish prankster, it reappears and takes the spark of ideas I felt so confident of and steps right up front and leaves me feeling unbalanced and unsure again. 

Dementia is selfish, it has taken my relationships and stolen my lust, leaving some people to suggest I am cold, hard, noncaring and distant. Dementia is not just an inconsiderate friend who,  borrows something and forgets to return it, o, dementia takes my time, my abilities and on some days, my sense of self.

My family is loving and supporting and for this I am grateful. Without them, I may turn sour and entrenched is only the losses. My new friends are pushing forward, initiating and compensating just like the thousands of other people living with dementia.

I am learning this game dementia plays and the rules it would like to make for my life. I have become selfish as well. Dementia will take, but not without it’s having to recognize my keen ability to compensate and reinvent myself. If my old friends could take the time, they would meet a new, improvised and pretty darn good functioning woman, who now hopes to use my experiences living with dementia, for the betterment of those to come.

Yes, dementia is selfish, knowing that, arm yourself for its manipulative ways, learn from those that have come before you and use this newly created mind, to continue the fight for better  understanding and living with the selfishness of dementia.”

I agree with Susan and feel what she has written is insightful, and incredibly helpful. Dementia is selfish, in the sense that we have no choice in the many things it changes in us, and we must be ‘armed’ to fight it. The other thing it highlights of rme is about the way others subconsciously often ‘blame’ us for those changes.

It is Mr Dementia who is changing us, and definitely not something we would ever choose for ourselves. As our needs change, which they do without our permission, we  need others to modify the way they treat us and speak to us, and we need them to work with us for ways that do suit our ever changing needs. 

Author: Susan Suchan 2015
Editor: Kate Swaffer
Copyright: Susan Suchan and Dementia Alliance International 2015

Research and news: June 2015

Slide6This weekly blog is late, due to time constraints caused by travels of the editor, and various other issues taking precedence which I will write about very soon. Please accept our (my) apologies.

However, there are a couple of interesting research reports I felt would be of interest to members this week, and a recently released ADI newsletter, the first one that DAI has a full page in as a regular feature.

Global Perspective Newsletter June 2015

Firstly, the Alzheimer’s Disease International Global Perspective Newsletter is out, with the first full page insert of news by Dementia Alliance International.

You can download the full newsletter here:  ADI Global Perspective Newsletter June 2015. DAI is featured on page 7.

Younger Onset Alzheimer’s disease

Reported on 28 May 2015 by Dr Ian McDonald in Dementia News, currently the Science Communicator at Alzheimer’s Australia, is another interesting research report: Younger Onset Alzheimer’s disease – new research reiterates it is not just about memory loss.

It is common to associate a diagnosis of Alzheimer’s disease with memory loss and while this is the case for many, new research has suggested that younger people (i.e. less than 65) with a diagnosis of Alzheimer’s disease will more commonly have problems associated with judgement, language and/or visual and spatial awareness, rather than memory loss.

This result was published in the Journal Alzheimer’s and Dementia and suggests a need for a greater awareness of the different symptoms associated with Alzheimer’s disease. This is something that Alzheimer’s Australia and other dementia advocacy groups around the world are committed to doing.

The study, which was undertaken in the UK and led by researchers from the University College London, analysed data from 7815 people in the US National Alzheimer Coordinating Centre database. Each participant had a diagnosis of Alzheimer’s disease, and a record had been made of the symptoms they had first noticed in the early stages of the disease. The average age of the group was 75, with the youngest person aged 36 and the oldest aged 110.

The results found that younger people with a diagnosis of Alzheimer’s disease more commonly displayed non-memory cognitive impairments (i.e. judgement, language, etc.), however the results also showed that the odds of depression and behavioural symptoms also increased with younger age. In comparison the odds of having psychosis (confused thinking) but no behavioural symptoms increased with older age.

Source: Alzheimer’s Australia Dementia News

ADI Report: Women and Dementia

ADI have also published an important report, Women and Dementia, with the purpose of this report is to understand the main issues affecting women in relation to dementia from an international perspective. The report examines the effect of gender on three specific groups: women living with dementia; women caring for people with dementia in a professional caring role; women undertaking an informal caregiving role for someone with dementia.

Key findings

Across all regions of the world, dementia disproportionately affects women.

More women live with dementia than men. The prevalence is higher for women than for men; women are more at risk of developing dementia and the symptoms they live with are more severe.

Women provide a substantial proportion of informal care to people with dementia, with around two thirds of primary caregivers overall being women.

This figure is significantly higher in LMICs, areas which will account for 71% of the global prevalence of dementia by 2050.

The formal care workforce is predominantly female, providing the majority of health and social care in the community as well as in hospitals and care homes.

There is currently very little research focusing on the gender issues of living with, or caring for, someone with dementia and on the long-term impact of dementia on women as family and formal caregivers.

 

The report recommends that:

All countries need to understand the current and predicted prevalence and acknowledge that dementia disproportionately affects women. Accordingly, policy makers should review what support is currently available and what is required to meet future needs.

There is also a need for skilled care competencies for health and care staff and professionals working with people living with dementia with complex needs and co-morbidities.

In all regions people should be able to access appropriate information and support in place, enabling women across the world to continue to provide care, and to feel cared for themselves.

Source: Alzheimer’s Disease International

Read the full ADI report Women and Dementia-Full report or the summary Women-and-Dementia-Summary-Sheet