Recently, DementiaSA’s courses have become SETA-accredited, offering newfound sustainability to the organization

DementiaSA opened its doors in 2006 and started offering training in dementia in 2010. We train home-based care givers, residential care facility staff, nurses and community health workers in specialized “person-centred” care required when caring for someone living with dementia. Our courses have proved popular with medical professionals, carers and lay people. Our courses have always allowed for health-care professionals to attain Continuous Professional Development points, however, this month, we took our training offering to a new level, by attaining our Services SETA-accreditation.

Services SETA-accreditation was a long administrative process, spearheaded by our awesome operations team, but successfully achieved and our certificate issued in June 2020. We are now a services-SETA accredited organization for training in Care of an Elderly Person, in which there is a dementia module. We are excited to start on this new era of training work and also for the sustainability that this accreditation will provide for DementiaSA as an organization.

If you are interested in training, please email us at info@dementiasa.org for more information. You can also find out more about the four courses that we offer on our website (https://www.dementiasa.org/training/)

Due to COVID-19, our trainings have been on hold but will resume in a few months’ time. Get in touch with us to find out more.

Services-SETA Accredited Organization

DementiaSA holds weekly virtual support groups

During lockdown, our support groups were unable to go ahead as usual. We envision that this situation will remain the same for quite some time, especially as many of our attendees are in the high risk group for COVID-19. With this in mind, and also the mounting pressures of the pandemic, we wanted to offer support in a different form.

We are holding weekly virtual support groups on the Zoom platform. These are one hour in length and provide a non-judgement safe space to share your issues that are dementia-related.

Attendance is free! Just email us at info@dementiasa.org to join us.

Looking forward to seeing you in a support group soon!

Mastering Approaches to Diversity in Social Work.

Linda Gast and Anne Patmore. 2012.
London: Jessica Kingsley.

Reviewed by Malcolm Wallis, DementiaSA

This book is part of a series (Mastering Social Work Skills). It has little to say about dementia which does not even merit a listing in the index. But it addresses an important concern: how should social workers cope with the diversity they encounter in the environment where they exercise their skills and carry the burden of heavy responsibilities. The book is largely based on the UK but the issues discussed are not totally at odds with the South African situation. For example, the authors see ethnicity as a major factor in many settings. As such it cannot be ignored either in theory or practice. However, we must avoid assuming that ethnicity is the sole form of diversity. Gender, sexual preference and disability, for example, cannot be left on one side. The book draws on important research conducted in a number of countries. The major contribution of Hofstede who wrote extensively on culture is given particular attention.

What I found particularly valuable is the authors’ device of posing key questions (‘points to consider’) for readers to discuss and reflect upon. There are also many case studies based on experience which struck me as likely to interest readers. For example, there are case studies about disabled service users and writing reports on difficulties experienced in families. This approach makes for a substantially more inter active text, an approach that might be usefully adopted for study in a number of fields.

Despite the absence of dementia as a topic, the book may be useful in social work, a field of endeavour which very often requires an understanding of diversity, an important aspect of which is dementia.

The book is obtainable from DementiaSA. It is priced at 280.00

The CDC has recently (8 April 2020) changed its recommendation regarding the use of face cloth coverings, especially in areas of significant community-based transmission.

Says the CDC:

We now know from recent studies that a significant portion of individuals with coronavirus lack symptoms (“asymptomatic”) and that even those who eventually develop symptoms (“pre-symptomatic”) can transmit the virus to others before showing symptoms.  This means that the virus can spread between people interacting in close proximity—for example, speaking, coughing, or sneezing—even if those people are not exhibiting symptoms.  In light of this new evidence, CDC recommends wearing cloth face coverings in public settings where other social distancing measures are difficult to maintain (e.g., grocery stores and pharmacies) especially in areas of significant community-based transmission.

It is critical to emphasize that maintaining 6-feet social distancing remains important to slowing the spread of the virus.  CDC is additionally advising the use of simple cloth face coverings to slow the spread of the virus and help people who may have the virus and do not know it from transmitting it to others.  Cloth face coverings fashioned from household items or made at home from common materials at low cost can be used as an additional, voluntary public health measure.

These cloth face covering are not recommended as surgical masks or for use by care-givers or health care providers in a clinical setting, but rather for use by the general public in general public settings. This also does not supercede the South Africa government’s corona virus guidelines in any way. You can find all of the government guidelines here.

Here are some links to videos and tutorials for you to make your own masks:

No sew Cloth mask:

No sew T-shirt mask:

No sew tissue paper mask:

No sew pantyhose mask:

There are also 3 pdf’s available to download, for various sewing versions of the masks.

Guidance for Patients and Carers

The CDC recently released new guidelines in relation to masks for all sectors of society. Please see this article New Recommendations Regarding the Use of Face Masks During Covid-19 for more information

The general guidance released for Patients and Carers is as follows:

  • Continue to take your medication and follow medical advice
  • Secure a one-month supply of your medication or longer if possible
  • Wash your hands thoroughly and often with soap and water or use hand sanitiser often
  • Avoid touching your eyes, nose, and mouth with unwashed hands
  • Clean and disinfect frequently touched objects and surfaces in the home
  • Keep a distance of at least one to two metres from people with a cough, cold or flu
  • Greet people without touching (hold off on handshakes and hugs)
  • Stay home as much as possible
  • Avoid crowds and non-essential travel
  • Be extra careful if you have more than one medical condition (e.g. diabetes and heart disease)
  • Seek medical attention if you have Covid-19 symptoms for more than two days
  • Quit smoking and avoid using coping strategies involving alcohol or drugs
  • Safeguard your mental health
  • Visits from people who provide essential support to you such as healthcare, personal support with your daily needs or social care should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus (Covid-19). All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often while they are there
  • You should have an alternative list of people who can help you with your care if your main carer becomes unwell
  • It has been shown that tobacco use (including tobacco smoking, vaping and using e-cigarettes) are at an increased risk of developing a more severe Covid-19 disease. If you do use tobacco products, it would be recommended to stop – this will not only protect you from severe Covid-19 disease but will be good for your lung health in general

As the Covid-19 pandemic spreads around the world, it is clear that people living with NCDs (also known as chronic diseases) are at a higher risk of becoming severely ill.

These include people living with cardiovascular diseases, diabetes, respiratory diseases, dementia, kidney disease and cancer. (For information on cancer visit Cansa.)

Older people, especially living with dementia, may become more anxious, frustrated, stressed, agitated, and withdrawn during the outbreak and it is easy to become overwhelmed with the scale and frequency of news updates. For those in quarantine these difficulties may be even more harsh.

People living with dementia with family may have limited access to accurate information and facts about Covid-19. They might have difficulties in remembering safeguard procedures, such as wearing masks, or understanding the public health information issued to them. Ignoring the warnings and lacking sufficient self-quarantine measures could expose them to a higher chance of infection.

Most local authorities have prevented visitors to residential care facilities. Loved ones and people living with dementia in care facilities have lost face-to-face contact. To ease the feeling of social isolation, it’s a good idea for group activities to still take place in care facilities, but in a new format. The use of technology, to provide virtual contact with family members and loved ones, helps to ease the loneliness and anxiety on both sides of the screen.

The importance of carers in this time cannot be over-stressed. Carers need to maintain strict hygiene but also monitor themselves closely for symptoms of Covid-19 and be vigilant of their own health.

It is important that care staff keep the environment calm and reassuring. The attitude and approach of any and every carer needs to reflect a calm and considerate disposition. If the carers themselves are uptight and anxious, this will be picked up from their body language and tone of voice. Thus, monitoring the mental health burden of carers at this difficult time is also important.

DementiaSA is able to assist with social worker intervention and counselling to both carers and families remotely – please call us on 0860 636 679 email us at info@dementiasa.org to set up what kind of assistance you need.

Caregivers of people living with dementia, should follow guidelines from the Centre for Disease Control (CDC), and consider the following tips:

For people living with dementia, increased confusion is often the first symptom of any illness. If a person living with dementia shows rapidly increased confusion, contact your health care provider for advice. Unless the person is having difficulty breathing or a very high fever, it is recommended that you call your health care provider instead of going directly to an emergency room. Your doctor may be able to treat the person without a visit to the hospital.

People living with dementia may need extra and/or written reminders and support to remember important hygienic practices from one day to the next.

  • Consider placing signs in the bathroom and elsewhere to remind people with dementia to wash their hands with soap for 20 seconds.
  • Demonstrate thorough hand-washing.
  • Alcohol-based hand sanitizer with at least 60% alcohol can be a quick alternative to hand-washing if the person with dementia cannot get to a sink or wash his/her hands easily

Ask your pharmacist or doctor about filling prescriptions for a greater number of days to reduce trips to the pharmacy.

Think ahead and make alternative plans for the person with dementia should adult day care, respite, etc. be modified or cancelled in response to Covid-19.

Think ahead and make alternative plans for care management if the primary caregiver should become sick

Questions can be posted on our website and we will respond!

We are holding a weekly “Wisdom Wednesday” – join us on Facebook to stay informed – https://www.facebook.com/DementiaSA/ – Look for the orange “Dementia Needs Action Now” logo

One of our volunteers, Fred Roffey, is a resident at the Helen Keller Retirement Centre and wrote us this touching message during lock down.

 

Subject: Happy Easter!

Dear Karen & All Other Good People at DementiaSA

I do hope you and your families are all well. I am managing to survive at Helen Keller Retirement Centre, where we have been locked down well in advance of the national lockdown.

There are now a few signs that bartering may be on the cards here, as one lady – an avid knitter – has offered residents some toilet rolls in exchange for a particular colour of wool.

Otherwise, our retirement centre is well organised, with the catering and restaurant staff wearing white face masks and gloves while serving. Also, they are being allowed to sleep in because of taxi difficulties while getting to work.

We are all trained to sanitize our hands at mealtimes, and at other times. The dining-room table arrangements have been changed. There used to be six at each table – one at each end and with four inbetween. Now it is more like a hotel, with two at a table opposite each other. This allows for social distancing between each table.

We are in total lockdown because of the number of elderly people in the centre, and as you know they are the most vulnerable. The restrictions mean no visitors and not being able to leave the centre by foot or car.

Son Marc and Leesha, who also live in Pinelands, deliver goods when I need them. They leave them with the guard at the front entrance gate, where the goods are sanitized. I manage to speak to them through the bars at the gate.They phone regularly and use Skype now and again. Marc and Leesha and her sister Sanchiya continue to work at their various hospitals in Cape Town.

So in one way and another we all manage to keep in touch, as we are doing now.

My love and best wishes to you all for a happy Easter and after

Fred Roffey

(I miss Coffey with Roffey and friends at DementiaSA and the goodies from various people!)

We are hoping to be reunited at the office with all of our DementiaSA staff and volunteers soon. Stay safe and stay at home!

PS. My connection with DementiaSA taught me never to argue with or upset a dementia patient. This stood me in good stead when a friend asked me to visit his elderly wife with advanced dementia in the frail care section of the Helen Keller Retirement Centre. He couldn’t visit her because of the lockdown regulations.

I visited her several times, and I thought I was making a breakthrough on one occasion because she exclaimed “I know you!”  But that was all.

I mention this because some experts say that one in every two patients in frail care around the world has early dementia. This indicates the huge scale of the dementia problem.

Please remember the Helen Keller Centre has a monthly dementia support group meeting (that takes place when we are not “physical distancing”) on the first Wednesday of every month, where carers are welcomed with tea/coffee/biscuits. The meeting starts at 6pm at the Centre in Links Drive, Pinelands.

woodell

Are the Keys in the Freezer? An Advocate’s Guide for Alzheimer’s and Other Dementias.

Patricia Woodell, Brenda Niblock and Jeri Warner. 2014.
London: Jessica Kingsley.

Reviewed by Malcolm Wallis, DementiaSA

This book sets out to provide practical guidance, not just for advocacy purposes but also to assist families and carers confronted by people living with dementia. The three authors are based in the USA. They are sisters and daughters of a mother with a familiar story: very active in all sorts of ways, as a mother, a member of her community, and a keen artist but diagnosed with dementia in her early 80s. After she passed away at the age of 88, the daughters decided to write a book based on their experience of observing and helping their mother. Between them, they have experience of working in the health sector, in the USA public service and in education. It is evident that the book has benefitted from many insights derived from their professional backgrounds.

The recurring themes are how little they knew about dementia at the beginning, the lessons learnt and the extent to which they believe their experience can benefit other people faced with similar predicaments. There, are, for example, quite detailed accounts of how they dealt with two of the main issues dementia requires us to think about: where was the best place for the mother to stay once it was clear that she could not remain at home, and how to deal with a mass of legal and financial matters once it became clear that she would not be able to cope with, for example, managing a bank account. The emphasis all along is on the practicalities with rather less on the medical issues (although of course all these factors are closely related to one another).

The book has some clear strengths. It is a readable account of lived experience. Its focus on practicalities is very welcome, especially the lesson learnt sections which are often about what the sisters would have done differently had they known what they know now. For example, there is much discussion about ‘advance directives’ with a balanced review of the complexities involved. An example of their approach is this quote from page 141: ‘We regret that we didn’t understand the purpose and the powers of advance directives earlier. We should have discussed them with our mother before her dementia worsened’.

The book includes some very helpful appendices on topics like cognitive tests and changing technologies (this may be rather out of date, much having happened since the book was published). There is a list of resources including publications which readers may find helpful.

This is a useful book which rewards reading but it is essential to note that it inevitably has much to say about facilities, legalities and social conditions in the USA, not all of which has direct relevance for South Africa where many of the issues are different, such as legal frameworks (the USA is a much more decentralized system than South Africa’s), and South Africa’s inequalities are greater than in the USA. This country has quite good provision for dementia care for those who can afford it, but most of the people are excluded from access by poverty. In recommending this book, I am very aware that we need a similar publication geared to this country’s circumstances.

The book is obtainable from DementiaSA. It is priced at R340.

If you would like to know more about the books, videos and any dementia related material we have available, please contact our office for more details on 021 421 0077

MACE

The 36- Hour Day.

Nancy L Mace and Peter V. Rabins. 2012.
New York: Grand Central.

Reviewed by Malcolm Wallis, DementiaSA

This book has much to commend it. Originally published in the USA in the 1980s, it has been updated to ensure its continuing relevance. The aim of the authors is to provide what they describe as a ‘family guide’ for those faced with the task of caring for people living with dementias with some emphasis on Alzheimer’s but not exclusively so; substantial reference is made to other dementias. In fact, it is a very detailed account of what dementia is and the roles are played by carers in supporting people suffering from the condition. In a sense it is much more than a guide as it has been highly valued by others whose interest is in understanding dementia for other reasons. For example, it is the kind of book that could greatly help researchers in fields such as general practice, public health, social work and ageing. The last of these examples needs some explanation. Although there are many cases affecting people younger than 60, the vast majority people living with dementia are over that age.

A word is needed about the title. The authors are not trying to revolutionise time by dispensing with the 24 hour clock but they are signalling by using the term 36 hour day the tough nature of the carers’ work which so often is a major test of stamina and stress thresholds, usually with little by way of financial compensation.

There are nineteen chapters plus two appendices (on the use of the internet and on organizations). It is over 600 pages in length so it is not the kind of book that might be read from cover to cover. The present reviewer, I have to confess, opted to read it selectively using the excellent index to see what is said about particular issues. It is best seen as a reference book. It starts with explaining what dementia is, then proceeds to deal with such topics as getting medical help, behaviour, independent living, ‘daily care’ (e.g. hygiene), medical problems such as pain and dizziness, death, getting outside help, the ways carers are themselves affected, family life, financial and legal matters, nursing homes, life style factors which may prevent dementia, related conditions such as head trauma and research. This is a long list but I have included it in this review because it shows that this is a comprehensive guide to the disease. The book also has the merit of being written using plain words where possible to maximise the likelihood of readers being able to understand it. The only reservation I have is that because it is written for an American readershp its usefulness is limited where reference is made to institutional issues such as medical aid and state interventions which are mostly irrelevant to the South Africa case.

The book is strongly recommended as it is a readable and thorough account of Alzheimer’s and related conditions.

The book is available from DementiaSA. The price is R200.

Innes

Key Issues In Evolving Dementia Care: International Theory – based Policy and Practice.

Anthea Innes, Fiona Kelly and Louise McCabe (editors). 2012.
London: Jessica Kingsley.

Reviewed by Malcolm Wallis, DementiaSA

As its title implies, this book looks at key issues in dementia care. The issues are such that the book has a wide range of topics to cover such as national planning, medication and the development of memory clinics. It is also global in scope in that a number of countries are referred to including very small ones (such as Malta) and very large ones in terms of both area (Australia, Canada) and population ( India). There is quite a lot about the United Kingdom where most of the authors are based but its neighbour, France, is also included. It is therefore not surprising that the authors are from different countries and bring differing perspectives to bear on the issues being looked at. Some are academics while authors are more directly involved in management at various levels.

I found it refreshing that a number of chapters contain case studies to amplify what is being discussed. For example, environmental design in Australia is not just viewed as a tool for the treatment of dementia but also reflects how one individual named Dulcie relates to her surroundings. In the case of India, we read about the issues facing care givers in families which are radically dispersed, where families are divided by some members living in India and others in the USA.

One important feature of the book is that we are given some very relevant information about the policies adopted in the different countries but also about how policies are themselves developed by, for example, the participation of stakeholders. A particularly good example is the chapter on Canada which is written by a senior person in government who was directly involved n policy development.

Another benefit of the book is that it includes a great deal of data about a number of issues, some of it derives from official sources but some is the result of independent research drawing on various journals and other publications.

It was published in 2012 but many of the issues it deals with are current concerns which are even more pressing at this juncture. It is a very important contribution to the literature on dementia.

The book can be obtained from DementiaSA. It is priced at R350.

gosschalk

Z. Alzheimer’s-A Shared Journey.

Bernard Gosschalk. 2009.
London: Jessica Kingsley.

Reviewed by Malcolm Wallis, DementiaSA

This short book is the author’s account of dementia. The ‘Z’ of the title refers to Zelda, his late wife, who died after living with dementia for many years. He also makes reference to his earlier marriage to Ruth who also predeceased him. The author seeks to give a very personal account of this highly difficult experience.

What makes the book different is that it tells a South African story. The author was born in this country but spent much of his life as an academic teaching Architecture at the University of Manchester. However, he spent a lot of time in South Africa where Zelda came from and where she died. This experience means that the book can be more meaningful to South Africans than are other accounts which lack that context. This duality of national experiences has other benefits. In particular, he is not impressed by the performance of the UK National Health Service and other organs of state; he is able to narrate in some detail the bureaucratic morass he encountered. In South Africa, the absence of a national service opens the way for the private sector but only for those who can afford it. There are perhaps some lessons for South Africa in this book, particularly since we have been debating for ten years how best to find a more equitable and effective system through National Health Insurance. I took from my reading of this book that it is important to strive for a more user friendly system than that of the UK which, however, needs to be affordable for both the state and people living with dementia, carers and family.

The book has other merits which can be noted. One is that the story, although briefly told, is infused with Gosschalk’s experience of life in both countries. He gives fond accounts of attending concerts at Manchester’s Free Trade Hall where as a student I saw the Rolling Stones. The author’s tastes are somewhat more highbrow than that. He also has well expressed affection for the beauty of Cape Town and the pleasures of living there.

It might sound like a sad book which on one level it is but it is not gloomy: what comes through strongly is a story of lives well lived despite the tragedies the author endured.

This book is obtainable from DementiaSA. Priced at R95.00

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.

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.

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.

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!