Book review: The Simplicity of Dementia: A guide for family and carers

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buijssen

The Simplicity of Dementia: A guide for family and carers.

Buijssen, H. 2005.
London: Jessica Kingsley.

Reviewed by Malcolm Wallis, DementiaSA

Although published some time ago, this book which was originally in Dutch, is a useful contribution to the literature on dementia. Don’t be confused by the title. It is by no means a simplistic account and is based on a great deal of reading, experience, professional involvement and reflection. The author has worked at a professional level as a psychologist with a special interest in ageing.

The book has been praised by reviewers in a number of publications. The title arises from his approach which is to avoid jargon where possible (this is in spite of his profession – we are told he is a psychogerontologist). More importantly he is at pains to explain as simply as possible how changes in memory functionality play a role in dementia. The book has the considerable merit of containing numerous quotations from interviews and discussions which were mainly conducted with carers. The book should be of particular interest to carers but also to others concerned at the growing seriousness of dementia throughout the world.

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Meet Malcolm Wallis: Our Book Reviewer

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Malcolm Wallis was born in 1945 in Hertfordshire in the UK. His education was partly in that country, including a doctorate from Manchester University. However, most of his primary and high school studies took place in Kenya where his father was employed as a Post Office official.

He has mainly worked in different countries in Africa. He came to South Africa in 1992 where he worked for the former University of Durban-Westville (now part of KwaZulu Natal) as Head of Public Administration. He later became Executive Dean of Management Sciences at the Durban University of Technology. Since retirement from full time employment he has continued to work in various different capacities. His academic work over the years has included developing and teaching in the field of Health Management both in the UK (Birmingham university) and South Africa (the University of KwaZulu Natal).

He became interested in Dementia when his mother was diagnosed with the condition in 2008. She passed away in 2017. When he came to live in Cape Town he was invited to work for DementiaSA as a volunteer where his role is to help build improved awareness of Dementia.

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DementiaSA takes the lead on making retirement centre dementia friendly

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On 1 November 2019, the new Care Centre at the Buh-Rein Retirement Village was opened on a beautifully sunny day. Set amongst landscaped gardens and architecturally pleasing apartments, the Retirement Village is a beautiful place to be. The first phase of the estate was opened in late 2018 and a year later, the Care Centre at Buh-Rein has been opened. This includes both a frail care facility and memory centre for people living with dementia.

Says Riaan Roos, Managing Director of the Multi Spectrum Property (MSP) group of companies: “MSP has gone to great lengths to achieve a Care Centre that will offer excellent care that will make a real difference in older people’s lives, by working within the guidelines of the recently released Macadamia Foundation’s ‘Memory Care specification for Dementia Care Facility Design and Implementation’. We were aided in this effort by input and advice from the architects, the Dennis Moss Partnership; Medwell, the care service providers; Shire Retirement Properties, as retirement living consultants; and dementia specialists, DementiaSA.”

Families of those who require the Care Centre’s services will be wowed by the focus on de-institutionalisation and the work that has gone into making the Care Centre as pleasant as possible a place to live, while still being under close supervision.

“The Memory Care Centre is the first of its kind in the Western Cape, with the kind of bespoke architecture designed to reduce frustrations that result from institutional environments and restrictive settings. Given the high incidence of dementias among ageing populations world-wide, and the effort that has been taken to create an appropriate space, the Care Centre is likely to experience high demand from the public and from within the estate. Several rooms have already been booked.”

DementiaSA was instrumental in advising MSP on the build and facilities for the centre. We have also established a satellite office in the centre to provide ongoing care and support to the memory centre and the care-providers, Medwell. We look forward to providing training, support and larger awareness about dementia from this lovely location, in 2020 and beyond.

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Happy holidays from Karen!

2019 has been a tumultuous year for South Africa and the world, with many unexpected outcomes. I am so proud for DementiaSA for holding its head up high and navigating challenging times with a clear eye on our long-term impact. No person living with dementia should suffer stigma or lack of care. This is our vision, for 2019 and beyond. Thank you so much to my fantastic, amazing team, who have pulled together and produced such amazing results. I am looking forward to a spectacular 2020. Happy holidays, everyone!

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HIV and dementia: A South African dilemma

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Dementia is a growing public health concern globally. Of particular concern, from a socio-economic perspective, is the cost of caring for people living with dementia. In 2010, it was estimated that the worldwide cost of caring was more than 604 billion USD annually. As the number of people living with dementia increases, so does this cost. However, less is known about the prevalence of dementia in low- and middle-income countries such as South Africa, as well as the unique risk factors for countries such as ours.

Dementia is a non-communicable disease or syndrome, caused by neurodegeneration, that affects memory, language, orientation and executive functions. As a result, behaviour, mood and ability to perform everyday activities are affected. Dementia is not a normal part of ageing.

In South Africa, disorders associated with neurodegeneration such as traumatic brain injury, alcohol dependence and HIV infection are affecting increasing numbers of older adults. There is also a growing burden of disease from non-communicable diseases such as diabetes, heart disease and obesity, as a result of unhealthy lifestyles and diet, all of which contribute to dementia risk.

There is potentially a growing epidemic of dementia in older South Africa, especially among those with HIV infection. The prevalence of HIV-associated neurocognitive dementia is 15 – 30% in untreated people with AIDS. The prevalence in individuals receiving highly active antiretroviral therapy is 10%, however. Adherence to antiretroviral treatment is essential to hold off the advancement of the virus and a cognitive disorder is potentially very disruptive to proper adherence.

It is difficult to quantify the impact of numbers of people with dementia and the age distribution of people living with dementia in the region but given an adult HIV prevalence rate of 19% in South Africa, it is conceivable that many people living with dementia are also living with HIV.

This presents a unique challenge to our health care and social structures, as well as a unique opportunity to respond effectively to one of the most under-publicised public health care challenges of our time.

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Self-care in the holidays

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The holidays can be a challenging time for any family member. Not everyone feels as jolly or merry as they think they need to be and the pressure to be cheery can weigh heavily on a person.

Additionally, visits from relatives and friends and travels can be stressful and tiring, especially after a long year. Here are a few tips for caring for yourself and your loved ones during the holidays.

1. Start with the basics!

Eat enough healthy food and drink enough water. Get enough sleep! Burning the candle at both ends sounds like a fabulous idea, but really you aren’t doing yourself or your loved ones any favours.

2. Move your body!

A walk around the neighbourhood or some beach bats before a swim can be enough to keep your body’s metabolism fired up and help you feel invigorated and strong. Of course, a hike, a game of tennis or an enthusiastic family football match are also a great idea.

3. Experience, rather than expense.

The thought of the rands running out of your bank account, or even worse, the debt mounting on your credit card, can easily leave you feeling bleak. Keep it tight and focus on making memories, rather than mountains of wrapping paper. Bring and share, Secret Santa and games rather than gifts are all great ways to keep connections alive without the overdraft.

4. Include everyone!

When you are stretched, it’s sometimes hard to remember Aunt Ann or even that neighbour down the road, whose family has emigrated, but reaching out will make you remember the true meaning of the holidays. Imagine the conversations you can have! New traditions being created are almost as important as the long standing ones. And don’t forget our little ones and our older folk, everyone wants to be involved, right from the beginning, so call in help to make the meringue, roll the dough, light the fire. Inclusion is the most precious gifts.

5. Quiet time too…

Be sure to make some time to sit quietly and reflect. Help others to have this time too and hold space for those that are too young or not able to do it for themselves. Sometimes it’s OK just to have no plans and sit quietly together, or alone.

These most certainly aren’t all the tips for the holidays but it’s a start, to get you thinking and remembering everything you’ve made great this year and thinking towards next year too.

Happy Holidays everyone!

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Memories made real through giving

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“I have not heard your voice in years, but my heart has conversations with you every day”

The holidays are a time for family and memories. As our homes fill with the whoops of excited children (and even grownups), it is hard not to remember our own childhoods. Now when we look around the festive table, there are often faces missing. The December holidays are a great time to reflect on our family, dear friends and the memories that created all of those special relationships.

As we sit around the table, we often share stories of the past…not even far distant past, but perhaps just a decade ago, when Granny was still alive, or before Oupa left us. It is in these moments we often reflect on the legacy that we are maintaining for these special souls.

DementiaSA values all of our contributions from our supporters, no matter how big or small. As we end off the year, we would like to ask you to please make a donation in the name of your loved one.

It’s so easy! Just Snapscan the code below or click the orange “Support Us” button on the top right of our webite to send a donation via Payfast. You are welcome to remain anonymous, but we would love to know who is supporting us, so that we can thank you.

We can supply you with a Section 18A certificate for tax purposes and our Annual Report, so that you can see all of the good work that your donation will contribute to.

We keep our operating costs as low as can be, so you are assured that your money goes directly to our projects, skills development, education, support, advocacy and counselling. We keep just a little in reserve, to keep the lights on and the coffee pot full – essentials!

We are so grateful for your ongoing support and care. Thank you for being a part of our community and we look forward to even more work with you in 2020.

All our love,
The DementiaSA staff

PS. If you can’t donate at this point, please head on over to our Facebook page and show us some love by liking our page. Thank you!

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CJSA Seminar 2019

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The Cape Jewish Seniors Association is holding their annual seminar at the Pola Paswolsky Auditorium, Albow Centre, 88 Hatfield St, Gardens on Wednesday, 6 November 2019 from 09h00.

The programme is included below. We can highly recommend this event. Booking is imperative. Enjoy!

Download the programme
Download the seminar registration form

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Concerned about Dementia? Here are 10 signs.

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The big question everyone asks is, how do I know if I’ve got it?

Here are 10 signs of Dementia*

  1. Recent memory loss that affects job skills
  2. Difficulty performing familiar tasks
  3. Problems with language
  4. Disorientation of time and place
  5. Poor or decreased judgement
  6. Problems with abstract thinking
  7. Misplacing things
  8. Changes in mood or behaviour
  9. Changes in personality
  10. Loss of initiative

*This check list does not take the place of a medical practitioner. Please consult your GP or geriatric specialist if you have concerns.

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Dementia basic information

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Seeing as though it has been World Alzheimers Awareness month, we decided to revisit some of the Dementia basic information.

What is dementia? And how is it caused?

There are over 9.9 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds.

Dementia is a general term for any disease that causes a change in memory and/or thinking skills that is severe enough to impair a person’s daily functioning (driving, shopping, balancing a checkbook, working, communicating, etc.). There are many different types of dementia, the most common of which is Alzheimer’s disease. Most types of dementia cause a gradual worsening of symptoms over the course of years due to progressive damage to nerve cells in the brain caused by the underlying disease process, which is referred to as neurodegeneration. The symptoms of dementia vary from person to person and may include memory problems or mood changes or difficulty walking, speaking or finding your way. While dementia may include memory loss, memory loss by itself does not mean that you have dementia. While some mild changes in cognition are considered a part of the normal aging process, dementia is not.

The cause of dementia is unknown in many cases. Research is ongoing to better understand what causes dementia, but the underlying mechanism is thought to be related to a build-up of proteins in the brain that interferes with how the brain functions or works.

Neurodegenerative diseases, like frontotemporal dementia, lead to abnormal protein build ups in the brain. Different protein build-ups are seen in different types of dementia. For example, proteins called beta-amyloid and tau are associated with Alzheimer’s disease while the protein alpha-synuclein is associated with Lewy body dementia. Changes in the blood vessels in the brain may result in vascular dementia. In a minority of cases, a reversible cause of a person’s dementia can be identified and treated. Screening for these reversible causes is part of the diagnostic evaluation for anyone with changes in memory or thinking.

There is no cure for dementia yet, but there are medicines that can help treat some of the symptoms of dementia. There are medications that may improve memory for a period of time. There are also medications that are effective for treating mood disorders, such as anxiety and depression, which commonly occur in people with dementia. It is also important that your provider carefully evaluates any medicine someone with dementia is taking, because some medications may make memory symptoms worse.

Already 62% of people with dementia live in developing countries, but by 2050 this will rise to 71%. According to South Africa’s 2011 census, there are approximately 2.2 million people in South Africa with some form of dementia.

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September was a busy month for DementiaSA

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At DementiaSA, we were very busy celebrating in September:

Internally, we held our Strategy Planning Workshop on 16 September. This year we had the privilege to be guided by Brian Brougham-Cook, Managing Director of Goals4U. The strategic planning highlighted the focus on increasing use of technology in our programmes and ensuring that monitoring and evaluation are a key part of our interventions. The day examined all the challenges and obstacles faced by the team as well as how we plan to best overcome them in a manner that uses international best practice. Our next steps will be to solidify the five year strategic plan for DementiaSA, which we look forward to sharing with all our supporters.

This was possibly the greatest celebration the team could have undertaken for Dementia awareness, because we are only a healthy organisation and able to assist in change, if we are an organisation with a common vision and a heart that beats as one.

On 21 September, DementiaSA hosted a mid-morning tea to show appreciation for carers and family members of persons living with Dementia.


Despite the rain, the event was well attended. Karen spoke about Dementia and thanked the carers for their exceptional work. We were entertained by the Vaudeville Companions and wow, what a show! The Vaudeville companions are a group of senior citizens who travel to different residential facilities to entertain older persons.

Each guest was given a gift pack and an activity blanket to take home. The activity blankets were made by Tracey Stotesbury and a group of volunteers. Thank you so much Tracey and friends, for your contribution!

We would just like to thank our donors, Pick N Pay, Ryan Epstein and everyone else that made the event so special.

We rounded off September with a very special competition.

DementiaSA is giving the chance to win a personalised recipe book to one lucky supporter. All you need to do is send us the recipe that holds a very special memory for you, include a picture and tell us why it is so special. You can win a recipe book, including your family recipe, laid out and printed beautifully. What an exception family heirloom this will make.

The competition entries have been extended until 30 November, so please do email or message us your entries on Facebook.

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Karen Borochowitz talks Dementia with Bongani Bingwa from 702

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Karen Borochowitz, our founder and Executive Director, is often asked to speak in public or in the media – as a leading expert on Dementia and care. In September, she spoke to Bongani Bingwa on the breakfast show of 702. Her chat with Bongani was a fantastic introduction to the topic of Dementia and got lots of South Africans talking. You can listen to it here:

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Accelerating the response to noncommunicable diseases in the African Region in line with the Political Declaration of the High Level Meeting of the General Assembly on the prevention and control of NCDs’

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DementiaSA rides high in 2018

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With staff settled comfortably in their new offices in Roeland Street, and with an inspiring view of Table Mountain tapering down almost to the street, DementiaSA moved confidently into 2018.


Coverage

Success came early in the year, with DementiaSA releasing its first television advert pro-bono by MC Saatchi & Abel. Enabling us to reach people all over South Africa because DSTV partnered with us we were able to reach loads of people on various channels. We thank the producers and Kayli Levetan for spearheading this. Our sincere thanks to George Du Plooy and his daughter Yolanda Du Plooy from our Hanover Park support group for bravely telling of their experiences in caring for Edna who lives with dementia. We salute you.

We received another boost when MC Saatchi & Abel assisted us with a pro-bono radio advert for Valentine’s Day.This allowed us the opportunity to approach the local radio stations, and it was received in a great way. Radio stations that aired our advert included GHFM, CCFM, Bush Radio, Radio Veritas South Africa, The Good News, Radio KC 107, Radio Riverside, MFM 92.6 – Move To The Music, and 939.com.

DementiaSA continued its vigorous promotional campaign with lots of media coverage. In particular, it allowed Karen Borochowitz to tell her story on air, as many radio stations wanted to know more about DementiaSA and what it does.

Watch the advertisements

Awareness talks

This year we were able to do 23 awareness talks all over Cape Town and aim to increase this with your help. If you would like us to attend an event or social group, or you would like us to do a presentation for your senior club, church group or any social club, we would be happy to come and tell you about DementiaSA and the work we do, please contact Nicole at funding@dementiasa.org or call 086 636 670.

Support groups

Three new support groups have been started this year in Strandfontein, Plumstead and Somerset West. If you would like to start a group in your area or join one, please contact Marilyn on 021-421-0077/78 or email adminsupport1@dementia.org

Training

A total of 210 people have been trained this year. We aim to reach more in 2019 and need your help to do so. If you know any nurses or family members who are caring for people with dementia, share the link below to inform them about our upcoming training. We offer our training throughout South Africa, all we require is a viable number of attendees and upfront in payment. DementiaSA training.

Events

DementiaSA has had the opportunity to be a part of various events such as Dementia Assessment Tool workshop held at Stikland Hospital, 21st National Family Practitioners Congress, and Ride the Mind event held at PlumsteadRusoord. These events gave us the unique opportunity to inform community members about dementia and introduce the service of DementiaSA.

Please let us know if you have any events you would like us to be part of, or if you would like information and advice sheets to distribute about the dementia disease.

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Advertisement: Yolanda

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Advertisement: George

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We are always there to help

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Need urgent help? Has your mother’s dementia suddenly taken a bad turn? Expert assistance is at hand with our National Helpline 24/7. DementiaSA runs a 24-hour helpline 365 days a year and employs a team of part-time and full-time social workers. What’s more, the service is free.

We encourage readers to use the service on our national helpline 0860  636 679. During the day you will get through to our offices in central Cape Town, and during the evening or night the call is sent to one of our social workers on duty. If necessary, they will refer the enquirer to a specialist.

Our motto is: “We’re always there to help along the way”. This is borne out by the fact that people have used the expression “the fog has cleared” after using the service and received advice, particularly if Alzheimer’s Disease is involved.

One in particular said: ‘For me, the medication has helped a lot – it’s lifted the fog.”

Another said: “It was a relief to get the diagnosis. The worst was not knowing.”

Praising her early diagnosis, one woman said she and her family had been given the chance to change their lifestyle to match her capabilities.

She emphasized it was a relief to be able to make definite plans for the future.

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Book review: Losing Clive to younger onset dementia – one family’s story.

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Helen Beaumont 2009. Losing Clive to younger onset dementia – one family’s story. London: Jessica Kingsley.

Review by Malcolm Wallis, DementiaSA.

This is an excellent biography, written by the widow of a victim of younger onset dementia. It traces the life of Clive Beaumont, a British soldier and for most of his life physically very active, who died in his early 50s having experienced dementia for about six years. There are two inter-woven strands, one being the illness and its effects on the family, the other being support including the role of the state and other organisations.

The book describes the couple’s early days together leading up to the confusing and devastating diagnosis of what was termed at the time ‘pre-senile dementia’, a wording now replaced by younger onset dementia, a relatively rare form of the condition, as the author notes, but certainly not negligible. The story is rich in detailed accounts of particular incidents and episodes such as driving, short duration disappearances, confusion over travel plans and communication breakdowns. Particularly touching is the account we are given of the impact on the family (mainly the author and the two young children). The book tells us how, after his condition deteriorated, Clive spent the last part of his life apart from his family in nursing homes and the like.

The role of supporting organisations is critically examined. It takes into account the decisions made by the UK bureaucracy on various matters (e.g. financial and health services) and the importance of non-government sector bodies such as research teams and the Alzheimer’s Society. The author and some of her contacts launched a smaller version of such organisations known as the ‘Clive Project’ after his death. One is impressed by how much of this kind of support is available in the UK (far more than in South Africa), notwithstanding some notable shortcomings such as lack of support for affected children.

This is very much the type of work that we need to see in South Africa. There are plenty of such oral stories that are not being written up, but should be so that awareness can grow in the wider society.

The book is highly recommended.

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