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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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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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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Hints for care-givers

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Carers play a vital role in helping people with dementia to adjust to living an indoor life in many ways.

Carers also have to adjust to a feeling of being overwhelmed by their caring role in addition to the scope of their family, employment and/or household duties.

Regular activities at home help people with dementia to retain their life skills and learn some new ones.

Also, activities done with a carer in the home or with others in a day-care centre provide opportunities for social interaction.

By providing an occupation or an outlet for energy, activities at home may lessen anxiety or boredom and consequent behaviour such as rummaging in drawers or pacing around.

Regular tasks

It is important to make activities for the person with dementia part of the regular routine at home, so that he or she feels a sense of inclusion in the various tasks being done.

Examples of tasks at home include: Folding sheets/towels (with help, if necessary), sorting and matching socks, dusting, cleaning kitchen worktops, sweeping/mopping floor, re-organising the food cupboard, polishing brass or silver, setting/clearing the table, washing/drying dishes, tidying drawers, arranging flowers, watering plants/window box, making a shopping list, feeding pets.

These are regular activities in the home. The carer also has to ensure there are daily personal activities such as bathing/showering, shaving/face make up, and dressing. Mealtime activities include preparing food, cooking, eating and drinking, and washing/drying plates.

Sensory stimulation

Sensory stimulation given by the carer with affection and gentleness will be enjoyed even if the person cannot express this verbally or is not physically active. Some ideas include looking at family photographs, smelling flowers, eating small tasty treats, and feeling a variety of different fabrics, objects and soft toys.

The carer can extend this to personal care activities such as gentle brushing of hair, using a foot spa, and having a neck or hand massage with scented oils or lotions. These are comforting and soothing to a person with dementia.

This article is based on one of the many advice sheets which are available at www.dementiasa.org

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Long-term planning is essential for dementia

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A strong warning about the world population explosion and its effect on dementia and Alzheimer’s Disease was given at the 21st National Family Practitioners Congress held in the River Club, Mowbray, Cape Town. It was the three-day annual conference of the South African Academy of Family Physicians, and team members from DementiaSA were in attendance at the DSA exhibition stand throughout the conference.

Speaking on the importance of advanced care planning for dementia, Leon Geffen, executive director of Cape Town-based Samson Institute for Ageing Research, said there was urgent need for action now as the world population jumped from six billion in 1970 to nine billion in 2020.

Much of the increase would be in low and middle income countries, which often had inadequate medical resources.

With people living longer, extra care would be needed because of cognitive impairment, frailty, loneliness, declining functional ability, and hospitalisation.

“By the age of 85 most people will have significant loss of brain tissue and some form of dementia, and they will all need care and a focus on their rights as individuals,” said Dr Geffen, who is an honorary senior lecturer at the Institute of Ageing in Africa at the University of Cape Town, and has worked with many community-based organisations in the Western Cape.

He pointed out that the growing number of older people presents a significant challenge to health and welfare systems, which are poorly equipped to deal with the needs of older people. As a result, they often receive poor quality care, particularly at the primary care level.

He said significantly more research is needed on disease, disability and health risks in the elderly population, as well as on their mental health needs and existing care gaps.

The Samson Institute for Ageing Research was founded to address these knowledge gaps. It is a registered non-profit organisation, and in 2016 it received an initial funding grant for five years from a private charitable trust, the Samson Family Foundation.

It is working to establish linkages with local and international academic institutions in order to conduct research, share resources and develop materials for training and other purposes.

More on www.sifar.org.za

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Health, wellness and fitness

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Pump up your brain health with exercise

Prevention is better than cure, and unfortunately in the case of dementia there is at present no cure although researchers around the world are racing to find one. However, there is encouraging news when it comes to preventing it.

According to Alzheimer’s Research and Prevention Foundation in the USA, regular exercise can help to prevent dementia and may, in some cases, help to slow further deterioration.

It says exercise protects against Alzheimer’s and other types pf dementia by stimulating the brain’s ability to maintain old connections as well as make new ones.

Experts believe regular attendance at gyms and health clubs/studios is specially recommended not only because of the exercise but because of the social interaction recommended for people with dementia – another reason for attending the regular support groups organised by DementiaSA (tel 021-421-0077).

Tips for sticking with an exercise plan at gyms and health clubs

If you have been inactive for a while, starting an exercise programme may be intimidating, but this where gyms and health clubs/studios help with advice and encouragement so that you start small and gradually build up your momentum and self-confidence

Many of them maintain records of progress made and apparatus used.. An additional aid to maintaining enthusiasm is to keep a private diary where you note increases in repetitions and weights used.

You could supplement your apparatus work with regular walks. The aim should be 150 minutes of moderate intensity exercise each week, which means at least 20 minutes a day.

It takes about 28 days for a new routine to become habit. So do your best to stick with it for a month and soon your exercise routine with feel natural, even something you miss if you skip a session.

Protect your head

Head trauma at any point in life may increase your risk of Alzheimer’s. This includes repeated hits in sports activities such as rugby, soccer and boxing, or injuries from a bicycle or skating fall or motorcycle accident.

Protect your brain by wearing properly-fitting sports helmets and trip-proofing the environment where you exercise.

Avoid activities that compete for your attention and cause you to fall, like talking on your phone while cycling or walking.

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Practical advice to carers

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Awareness talk by Bobby Jutzen

An inspiring talk by Bobby Jutzen, a board member of DementiaSA, left a “feel good” impression with those attending the latest meeting of the Pinelands dementia support group held at the Helen Keller Society.

He gave a graphic description of the many years he spent caring for his wife Maureen until her death, and thanked Karen Borochowitz for his introduction to DementiaSA after hearing her speak during a radio interview.

Using the word Courage as the basis for his talk, he broke it down into: C for Choice, O for Organize, U for Understand, R for Remember, A for Anger, G for Guilt, and E for Encourage.

Choice, carers have the choice of sitting in a corner and groaning or doing the best they could for affected people.

His choice was to take care of Maureen. He met Karen at a support group and DementiaSA was started in 2006. He became heavily involved in support groups.

Organize, this is essential, and carers have to have the patience to help people with dementia to wash, dress and undress. They have to make the home safe, so there are no sharp edges or knives, or slippery carpets.

In cases of disturbed sleep, there has to be an arrangement for the affected person to sleep in another room with a light on, as it was essential to obtain sufficient rest.

Understand, family members have to take time to understand the various changes in the home and in the family member affected.

If difficulties or tensions arose, it is often effective to take the person for a walk in the garden or around the block.

Remember, he said it was essential to understand that each person was an individual and his or her brain had different memories. “Try to think of a common memory, such as when you laughed together.”

Bobby pointed out that memory slips could be embarrassing and particularly when shopping, as the person with dementia could slip away while the carer was choosing goods.

Anger, he said God was the first object of anger. “You ask yourself – Why has this happened? My wife is a good person. Instead of blame, you must ask God to give you strength and peace, so that you can direct your anger into love for your wife and children.”

Talking on Guilt and Encouragement, he said carers must at all times persevere with doing the right thing for the affected person. “Sit in front of them, look them in the face and keep your tone of voice, body language and words under control.”

All family members had to be trained to demonstrate encouragement.

Also essential was choosing the right care centre to suit one’s pocket, with suitably-trained staff and activities such as crossword puzzles, word games, indoor ball games and sing-alongs with other residents.

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A trouble shared…

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An old saying “A trouble shared is a trouble halved” may not be applicable in all cases, but it certainly helps when it comes to dementia problems.

DementiaSA has been successful in tackling the problems in several ways: (1) Establishing support groups for those caring for people with dementia; (2) Arousing awareness of dementia through talks given by DermentiaSA social workers; and (3) Training people to become carers

Support Groups

DementiaSA now has support groups throughout the Western Cape and is busy setting up others outside it. It has nearly 20 support groups in the Western Cape, spreading from central Cape Town to Pinelands, Milnerton and Plumstead and from Bellville to Gordons Bay, Hermanus, Kleinmond, Kuils River, Langebaan, Strand and Somerset West.

There are regular surveys to establish the impact the support groups have in caring for a loved one with dementia. Examples of the written replies are: “Enlightening” and “I most definitely would recommend the support group experience to others.”

Other replies are more detailed: “The minute I walked in we were embraced like family because everybody’s stories were different, some sad, some happy, some funny, but we all had a similar experience that I could relate to. Just being in the support group uplifts my spirit and I come home feeling more renewed.”

Another example: “I was feeling alone, not knowing what to do or how to cope with my mom’s dementia, with the way she was dressing herself. It looked like she never cared.” Later the writer is much more optimistic after attending the support group: “ “It has made me more relaxed. I’m talking to her and she doesn’t get upset with me. I’m really going with the flow. It is awe-inspiring. You learn a new thing every month, and how to go back in their time because our time doesn’t exist any more.”

Awareness Talks and Training Meetings

The DementiaSA social workers are well known for giving encouraging and stimulating talks at the support group and training meetings.

Also, readers are encouraged to contact DementiaSA about getting a social worker to talk at other social events, such as church meetings. In this way the dementia message is being continually spread, helped by the advice leaflets which are distributed at the meetings.

The social workers are well-respected, highly trained and experienced, with the older persons speaking English, Afrikaans and isi-Xhosa.

They are equipped to assist with complex dementia cases where expert interventions are required. They can also help to investigate reports of elder abuse.

The social workers are also invaluable in helping to train people as dementia carers. They encourage people who have family members living with dementia to do the training to get a better understanding of how to care for them.

Anyone is allowed to do the training, and this has encouraged an increasing number of people to come forward, so that well over 300 carers are now active in the field in 2018.

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Woolworths staff visits DementiaSA on Mandela Day

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A celebration in progress after the handing over of a R5000 donation, from Woolworths staff members at the DementiaSA offices in the Gardens, Cape Town. Natalie Marrow (right), lead import merchandiser at Woolworths head office in Cape Town, is seen with her team involved in importing lingerie. The team arrived at DementiaSA as part of their commitment to expressing solidarity with the ideals of the Nelson Mandela 100th birthday celebrations.  Karen Borochowitz (standing), executive director of DementiaSA, spoke on her personal involvement in dementia caring over many years, and showed short video clips.

Woolworths announced at their 85th anniversary that they would be partnering with the MySchool MyVillage MyPlanet fundraising programme to provide 50 educational bursaries of R20 000 each, totalling R1 million.

DementiaSA is honoured to be a part of this fundraising programme and would like to encourage you to sign up for a free MySchool card in store or online at www.dementiasa.org/ and choose DementiaSA as your beneficiary; you can have up to four beneficiaries.

The MySchool MyVillage MyPlanet fundraising programme is one of South Africa’s biggest community programmes. Who raises funds for schools, charities and environmental organisations through a card system that allows supporters to raise funds for their beneficiary (school or charity) every time they shop at a partner stores. Partners make a contribution, on behalf of the supporter/cardholder, towards the beneficiary they have selected.

Nominate DementiaSA as your MySchool MyVillage MyPlanet beneficiary here.

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