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If you or a family member has recently been diagnosed with Alzheimer’s, it’s reassuring to know you are not alone. According to Alzheimer’s Australia there are more than 353,800 Australians living with some form of dementia so there are many many resources if you have a loved one with dementia.

There has never been more information available to help you and your family adjust to living with this condition. This month is Dementia Awareness Month and so we have compiled a list of the best resources to support you below.

Online

Alzheimers Australia Website

This should definitely be your first point of reference. Here you will find links to support and services in your state, downloadable fact sheets, helpful tools, videos, research papers and real life stories of others living with dementia.

Blogs

Reading about someone else’s experience in managing their dementia can be very insightful. Across the world caregivers and people have started sharing their stories. Here are a few great ones:

Dealing with Alzheimers – this is a firsthand account of Kris’s experience of being diagnosed with early onset dementia at the age of 46. She is now 60 and is still able to write about her experience.

Dealing with dementia – Kay Branford has written a blog that includes helpful tips and advice that she learned whilst caring for both her parents who experienced dementia and memory loss.

Apps

There are a number of apps being launched onto the market to help people living with dementia and those caring for people with dementia.

We have chosen to profile Mind Mate- a brilliant app that has thought of everything when it comes to living with dementia, for those affected and their loved ones.

The app has games which are meant to stimulate a users’ cognitive abilities. Games have been created based on world leading research.

It has a “Tools” section – which provides a helping hand to those living with early stage dementia. This includes tools to make notes, to-do lists, as well as helpful, customisable reminders.

A “Getting to know me” section is also provided – this is especially helpful when a person with dementia has to leave their home, or has to go to a hospital or care home as it provides identifiers which can be used to ensure proper treatment and contact with family members and loved ones.

The MindMate App also provides physical exercises and nutrition advice for a healthier lifestyle to stay mentally as well as physically fit.

Books

The following two books could be helpful to read as you grapple with a dementia diagnosis.

‘Not Right in the Head’ – Michelle Wyatt

A light-hearted, heart-warming account of how one family faced Alzheimer’s and how the almost comical events within the secure walls of the nursing home made them realise that humour was the only way through.

‘Where the Light Gets In: Losing My Mother Only to Find Her Again’ – Kimberly Williams-Paisley

Where the Light Gets In is written by Hollywood actress Kimberly Williams–Paisely who tells the  story of  her mother’s rare form of dementia called primary progressive aphasia—from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humor and grace in the midst of suffering.

The original version of this article appeared on careseekers.com.au. Reproduced with permission.  

About Lauren Hockley

Lauren is the co-founder of Careseekers, an online marketplace connecting people looking for in-home carers with carers looking for work. She started the business with her sister Marissa after they saw their family struggle to find in-home carers for their grandparents who were adamant to stay at home as they aged. Lauren’s background is in advertising and marketing and has held marketing roles in start-ups, social enterprises and charities both in Australia and the UK. Lauren holds a Masters of Commerce in Marketing from the University of Sydney. She is passionate about using business as a vehicle for good. For more information: careseekers.com.au

Photo credit: Woman in Wheelchair by Kzenon

Important note:Carers’ Corner is not associated with Careseekers or the services it provides. This article is subject to copyright. Carers’ Corner is an Australian website and the information in this article might be specific to Australia. We do not provide health, legal, financial or other advice and this article should not be used for making decisions. You and others should seek advice from suitably qualified professionals. Any use you make of this article is at your own risk and to the extent permitted by law we disclaim all liability in connection with this article. You should read the Disclaimer + legal terms on carerscorner.com for more details about this and the basis on which this article is provided.

Do you feel you have stubborn older parents?

If your parents seem to become more and more stubborn as they age, don’t despair, you are not alone. A new study by Penn State University was recently published in the Journals of Gerontology: Psychology Sciences which explored stubbornness and the struggle for independence many older adults face as they try to maintain the life they had and the people they were.

As explained in a Penn State News article, 75% of children and 66% of ageing parents in the sample say “stubborn behaviour such as insisting, resisting or persisting is happening sometimes”. From the findings of this research we have come up with some top tips to best deal with stubborn behaviour.

1. Understand why there is stubbornness

If there is a conversation that keeps getting a stubborn response you need to change the way you talk about it or get to the heart of why there is resistance. For example, is it the way you are addressing the issue, or the actual topic itself? Understanding why parents may be “insisting, resisting, or persisting in their ways or opinions,” the study found, can lead to better communication. Zarit who conducted the study, has advice for the adult child: “Do not pick arguments. Do not make a parent feel defensive. Plant an idea, step back, and bring it up later. Be patient.”

2. Don’t take it personally

The study also found that “adult children link perceptions of parent stubbornness with how children see their relationships with their parents, but parents link their perceptions to who they are as people”. The strong desire older people have to hold onto their independence is often the driving force behind stubbornness and not a reaction to the children and /or what they are suggesting.

3. Talk about goals

Speak openly about the goals you both have, especially when it comes to care options this includes long term goals such as staying at home vs residential aged care and short term goals on the day to day running of their lives. Allison Heid, project director, New Jersey Institute for Successful Ageing, Rowan University School of Osteopathic Medicine and recent Penn State Ph.D. recipient comments on this, “helping families learn how to talk about older adults’ preferences and about goal differences may be important in helping families best support older adults.” (See the Carers’ Corner article on ascertaining your ageing parents wants and needs).

4. Keep lines of communication open

Don’t be scared off by stubborn and resistant responses and think there is no way to get through to ageing parents. It is par for the course as their life stage transitions from independence to dependence and as Heid explains, “for families providing support to an older adult, this work confirms that these behaviours happen, but also that there is room for continued communication to ensure that there are shared goals in care and support.”

Some useful links:

Carers’ Corner article on ascertaining your ageing parents wants and needs – http://carerscorner.com/step-1-in-searching-for-an-aged-care-home-wants-and-needs/

Penn State University News article on ageing parents study – http://news.psu.edu/story/342263/2015/01/27/research/communication-key-when-dealing-aging-parents

Penn State

The original version of this article appeared on careseekers.com.au. Reproduced with permission.  

 About Lauren Hockley

Lauren is the co-founder of Careseekers, an online marketplace connecting people looking for in-home carers with carers looking for work. She started the business with her sister Marissa after they saw their family struggle to find in-home carers for their grandparents who were adamant to stay at home as they aged. Lauren’s background is in advertising and marketing and has held marketing roles in start-ups, social enterprises and charities both in Australia and the UK. Lauren holds a Masters of Commerce in Marketing from the University of Sydney. She is passionate about using business as a vehicle for good. For more information: careseekers.com.au

Photo credit: Pensioner by truk

Important note: Carers’ Corner is not associated with Careseekers or the services it provides. This article is subject to copyright. Carers’ Corner is an Australian website and the information in this article might be specific to Australia. We do not provide health, legal, financial or other advice and this article should not be used for making decisions. You and others should seek advice from suitably qualified professionals. Any use you make of this article is at your own risk and to the extent permitted by law we disclaim all liability in connection with this article. You should read the Disclaimer + legal terms on carerscorner.com for more details about this and the basis on which this article is provided. 

There are celebrations for Father’s Day and for Mother’s Day but what about celebrating and recognising the contribution carers make to our ageing parents’ lives?

Well not only do we get a day – we get a whole week!

11 – 17 October 2015 is National Carers Week which celebrates and recognises the 2.7 million Australians who provide unpaid care and support to family members or friends. That’s 1 in 8 Australian people who are carers – with many not even recognising or getting support for their caring role.

Even though many of us might not necessarily think of ourselves as “carers” because we might not look after our parents full time, we are still acting in a caring capacity and need to cope with the demands, challenges and rewards, of caring for our ageing parents.

Caring is tough work and this National Carers Week, we are being encouraged to “take a break”.

Here are 5 tips for taking care of the carer – ourselves:

1. Look after yourself – exercise at least 30 minutes a day. By exercising not only are you taking care of yourself for your own physical well being, but it will also help make you a stronger carer. Carers NSW gives you some tips on getting started.

2. Look after yourself – eat well When you’re busy running from one appointment to another or making calls or visits during your lunch break, it’s easy to skip meals or eat fast food. Carers Victoria has some great tips on healthy eating for busy people. We’ve also included an article from The Guardian in the useful links section to give you another perspective on healthy eating.

3. Take time for yourself – respite Whilst you’re a dedicated carer, everyone needs a little time for themselves. Respite care is where you take a break from the caring and let someone else take over. Respite can be for a week, a day or an hour, and can have positive impacts on both the carer and the person being cared for. You can do it informally such as by asking a family member or friend to take on the caring role for you whilst you take a break, or you can do it more formally. Formal options include having your ageing parent go to an aged care facility for a short period of time, or to a community day centre, or if you’d prefer to have them stay at home, you can get a professional carer in from an agency or sourced through an organisation such as careseekers.com.au.

4. Educate yourself – resources for carers Navigating the maze that is caring for our ageing parents is hard (that’s actually why we set up carers’ corner in the first place) so make life easier for yourself by educating yourself on topics that help you care. In addition to the great resources on carerscorner.com, the carers association in each state has some valuable information such as navigating the hospital system.

5. Get support – counselling for carers Whilst many of us can turn to our family and friends for support, they are not professionals and sometimes it’s best if we seek help from a professional counsellor. Carers Australia runs a National Carer Counselling Program to help you with emotional support, health and well being and practical problem-solving techniques among a raft of services. Call 1800 242 636 (during Australian business hours) to make an appointment. Counselling can take place via telephone, email, Skype or face to face as an individual or in a group. More information on the National Carer Counselling Program can be found here.

In addition to being encouraged to take a break, this Carers Week we are also being asked to pledge to “acknowledge the ongoing contribution of Australia’s 2.7 million unpaid carers, and pledge to help build a carer-friendly Australia”. You can join carers’ corner in making a pledge on the National Carers Week website – http://www.carersweek.com.au/make-a-pledge/

National Carers Week is an initiative of Carers Australia and funded by the Australian Government.

Some useful links:

National Carers Week – http://www.carersweek.com.au/

Make a pledge this National Carers Week –  http://www.carersweek.com.au/make-a-pledge/

Carers Australia – http://www.carersaustralia.com.au/

Carers association in each state – http://www.carersaustralia.com.au/about-us/contact/ or call the Carer Line on 1800 242 636.

Statistics on caring – http://www.carersaustralia.com.au/about-carers/statistics/

National Carer Counselling Program – http://www.carersaustralia.com.au/how-we-work/national-programs/national-carer-counselling-program/ or call 1800 242 636

Carers NSW webpage on looking after yourself through exercise – http://www.carersnsw.org.au/advice/look-after-yourself

Carers Victoria webpage on looking after yourself by eating healthy – http://www.carersvictoria.org.au/advice/look-after-yourself/healthy-eating-for-busy-people

The Guardian article on healthy eating tips for busy tired public servants (we chose this as they have similar characteristics to busy carers) – http://www.theguardian.com/society-professionals/2015/jul/02/healthy-eating-tips-busy-tired-public-service-workers

My Aged Care information on respite care – http://www.myagedcare.gov.au/caring-someone/respite-care

Careseekers online service that matches carers with those that need in home care – http://www.careseekers.com.au/

The internet is a big and evolving place and we see this list of useful links as continuously being a work in progress. If you have a link you’d like to suggest, or have noticed a broken or out-of-date link, we’d love to hear about it. Please contact us. 

Photo credit: National Carers Week 2015 logo by Carers Australia (cropped)

Important note: This article is subject to copyright. Carers’ Corner is an Australian website and the information in this article might be specific to Australia. We do not provide health, legal, financial or other advice and this article should not be used for making decisions. You and others should seek advice from suitably qualified professionals. Any use you make of this article is at your own risk and to the extent permitted by law we disclaim all liability in connection with this article. You should read the Disclaimer + legal terms on carerscorner.com for more details about this and the basis on which this article is provided.

September is Dementia Awareness Month and Alzheimers Australia has produced an extremely moving video (click link or scroll down to view) showing the effect on children when a family member is diagnosed with dementia.

Many of the people who call Careseekers for help are the adult children or husbands, wives or partners of people with dementia but the video made us think of the next generation and how they are coping with seeing their grandparents or even parents being diagnosed with dementia.

We spoke to Helen Carswell, Senior Counsellor at Alzheimer’s Australia who gave us some valuable insights that have helped us create tips for helping children cope with dementia in the family.

How to explain what dementia is to your child

The amount of information you should give will depend on your child’s age, knowing what is appropriate for them.

It is important for children to understand that it is a disease of the brain that makes them behave differently.

Use examples to show how sick the person is. A great example is “If Grandpa had a broken leg you would see that his leg is broken because there would be a plaster around it. We wouldn’t expect him to walk around on a broken leg like he used to. The problem with Grandpa is his brain not his leg, it is now gluggy and not like it was before and we cannot expect him to think and behave the way he used to.”

There are many storybooks that have been written for children which help explain what is happening to someone with dementia. We’ve included a book list in the useful links section below.

  How to respond when a child sees frightening behaviour in a parent or grandparent

Be honest and deal with things as they arise to help them make sense of what is going on around them.

If they have seen something that may upset them, ask them about it, ask them about how it makes them feel.

Remember that not everyone with dementia acts in an angry or violent manner so there is no need to keep your child away from someone with dementia in fear of them witnessing scary behaviour.

How to help children remember what their parent or grandparent used to be like

Tell stories from the past about the parent or grandparent using photos and videos and referring to things they used to do with him or her.

Explain to your child that it is their responsibility to keep the memory of their grandparent/parent alive because unfortunately they can no longer hold onto those memories.

Get children to create photo books, scrapbooks or collages of them and their parents/grandparents lives together and also before they were born. Let them share it with their parents or grandparents and with other family members, friends and teachers at school.

For more information, Alzheimers Australia have a factsheet: About Dementia – Information for Young People which can be downloaded here.

If you or someone you know needs help understanding or dealing with dementia, Alzheimer’s Australia has a great number of resources available on its website www.fightdementia.org.au or contact the National Dementia Helpline on 1800 100 500.

Some useful links:

Booklist:

Celia and Nonna Authors: Victoria Lane and Kayleen West. Published by: Ford Street

Celia and Nonna is a significant and heart-warming picture book about the special bond between children and grandparents – and what happens when life changes. Grandparent’s ageing is a universal experience, yet it is rarely told in picture book form. In this story, young Celia finds a delightful and positive way to navigate this confusing time.

http://www.victorialanebooks.com     http://kayleenwest.com.au     http://www.fordstreetpublishing.com/ford/index.php/component/content/article/50-demo-content/books/263-celia-and-nonna

Do You Remember? Author: Kelly O’Gara and Anna McNeill. Published by: Wombat Books

A beautiful exploration between a child and their ageing grandparent . Children will relate to the mice as they read the story and understand their grandparent’s condition. The book can cater for multiple ageing conditions but specifically is focussed on explaining Dementia to children.

http://www.wombatbooks.com.au/do-you-remember

Harry helps Grandpa remember Authors: Karen Tyrrell and Aaron Pocock. Published by: Digital Future Press

Harry and Grandpa love playing hide-and-seek together. Over time Grandpa becomes grumpy and forgetful, refusing to play games with Harry anymore. On Grand-parent’s Day, Grandpa becomes confused and lost. He couldn’t even remember Harry’s name. Then Harry discovers clever ways to boost Grandpa’s memory.

How does Harry help Grandpa remember? Endearingly told and full of hope, compassion and humour, ‘Harry’ provides a gentle introduction for children to the realities of Dementia and Alzheimer’s. Winner of RADF grant through Arts Queensland

http://www.karentyrrell.com/harry-helps-grandpa-remember     http://digitalfuturepress.com/

Lucas and Jack Authors: Ellie Royce and Andrew McLean. Published by: Working Title Press

Every week Lucas’ mum visits Great Grandpop at the nursing home. And every week Lucas waits for her outside. Waiting is boring!  Until Lucas meets Jack. Jack is tricky and Jack is fun, and he is a great storyteller. Lucas & Jack is a great book for introducing young children to the idea that old people can be fun and that deep down we have more in common than we think. More importantly Lucas & Jack encourages children to ask questions, be curious, imaginative and empathetic. Shortlisted for the Speech Pathology Australia Book of the Year 2015

http://www.ellieroyceauthor.com    https://www.penguin.com.au/products/9781921504662/lucas-and-jack

When I see Grandma Authors: Debra Tidball and Leigh Hedstrom. Published by: Wombat Books

A young girl and her toddler brother visit their sleeping Grandmother in an Aged Care Home and help ‘brighten her dreams’ and the lives of the resident community.

A poignant celebration of life and love. Winner children’s book section of CALEB award 2014, shortlisted for Speech Pathology Book of the Year 2014 All author royalties donated to the Hazel Hawke Dementia Research and Care fund.

http://www.debratidball.com   http://www.wombatbooks.com.au/when-i-see-grandma

Alzheimer’s Australia resources:

Alzheimer’s Australia – www.fightdementia.org.au

Fact sheet on frequently asked questions about dementia for young people – https://fightdementia.org.au/sites/default/files/helpsheets/Helpsheet-AboutDementia05-InformationForYoungPeople_english.pdf

Video Kids4Dementia 1 – How do you feel about having a parent or grandparent with dementia? –

https://www.youtube.com/watch?feature=player_embedded&v=nEJkTMBVMfc&list=PLAwhBH-4GO5iHkEggqw4ruVpkI-Z1GreE

The internet is a big and evolving place and we see this list of useful links as continuously being a work in progress. If you have a link you’d like to suggest, or have noticed a broken or out-of-date link, we’d love to hear about it. Please contact us.

The original version of this article appeared on careseekers.com.au. Edited and reproduced with permission.  

 About Lauren Hockley

Lauren is the co-founder of Careseekers, an online marketplace connecting people looking for in-home carers with carers looking for work. She started the business with her sister Marissa after they saw their family struggle to find in-home carers for their grandparents who were adamant to stay at home as they aged. Lauren’s background is in advertising and marketing and has held marketing roles in start-ups, social enterprises and charities both in Australia and the UK. Lauren holds a Masters of Commerce in Marketing from the University of Sydney. She is passionate about using business as a vehicle for good. For more information: careseekers.com.au

Photo credit: Smiling Family with Book at Home by Doglachov

Important note: This article is subject to copyright. Carers’ Corner is an Australian website and the information in this article might be specific to Australia. We do not provide health, legal, financial or other advice and this article should not be used for making decisions. You and others should seek advice from suitably qualified professionals. Any use you make of this article is at your own risk and to the extent permitted by law we disclaim all liability in connection with this article. You should read the Disclaimer + legal terms on carerscorner.com for more details about this and the basis on which this article is provided. 

Do you have elderly parents?

Do you have adult children still needing support from you emotionally or even financially?

If you answered yes to these two questions then you are part of the Sandwich Generation – the first modern generation to be sandwiched between the care of adult children and their own parents.

You may even be able to make it a triple decker sandwich by throwing into the mix grandchildren who you help to look after.

Many Baby Boomers find themselves in a caring role during what is meant to be the freedom years of retirement.

One slice of the bread is elderly parents. Australians are living longer but this does not mean they are living out their 80s and 90s as spritely healthy beings.

Then on the other side of the sandwich you have adult children who either are still living at home while they save up for their first home, an insurmountable goal in some Australian cities or have finally moved out and started their own families. As these new parents navigate the rocky waters of working life and child rearing who is there to help but mum and dad with time on their hands? A sea of grandfathers and grandmothers in the playground and at Baby Music classes is becoming a familiar sight these days!

So how should members of the Sandwich Generation approach this stage of life?

Here are three top tips to help make your retirement years more footloose and fancy free

1. Set clear boundaries. Have specific days or times in your week that you do activities you enjoy that are separate from being a carer and support to your loved ones.

2. Get some help. Elderly parents will usually need more care in their homes as they age. Perhaps it is essential you visit them first thing in the morning but you don’t need to be there all day with them and can hire a carer to help you throughout the day.

3. It’s about quality not quantity. Call regularly, pop in for special visits but make sure you have the right supports in place to help your parents and share the load.

This article originally appeared on careseekers.com.au. Reproduced with permission. 

 About Lauren Hockley

Lauren is the co-founder of Careseekers, an online marketplace connecting people looking for in-home carers with carers looking for work. She started the business with her sister Marissa after they saw their family struggle to find in-home carers for their grandparents who were adamant to stay at home as they aged. Lauren’s background is in advertising and marketing and has held marketing roles in start-ups, social enterprises and charities both in Australia and the UK. Lauren holds a Masters of Commerce in Marketing from the University of Sydney. She is passionate about using business as a vehicle for good. For more information: careseekers.com.au

Photo credit: 4 generations strong by Julie Elliott-Abshire (cropped)

Important note: This article is subject to copyright. Carers’ Corner is an Australian website and the information in this article might be specific to Australia. We do not provide health, legal, financial or other advice and this article should not be used for making decisions. You and others should seek advice from suitably qualified professionals. Any use you make of this article is at your own risk and to the extent permitted by law we disclaim all liability in connection with this article. You should read the Disclaimer + legal terms on carerscorner.com for more details about this and the basis on which this article is provided.