Gillian Moncaster

Winston Churchill Fellow, 2014

A study of dignity and dementia aspects of residential, nursing and domiciliary care for

the elderly in South Africa

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A study of dignity and dementia aspects of residential, nursing and

domiciliary care for the elderly in South Africa

SUMMARY

Like the UK, South Africa has an ageing population and is actively developing innovative approaches to

care. The six week visit was aimed at:-

Studying care of the elderly in comparison with methods used in the UK;

Exchanging information and tools;

Establishing contacts with a view to future collaboration;

Identifying South African practices which could usefully be applied in the UK, and vice versa.

Key examples found of practices potentially useful in the UK were:-

Taking a more tolerant view of keeping pets at care homes;

Encouraging residents to help with daily tasks such as preparation of meals;

Giving residents more freedom to go out;

Having two or more people sharing one bedroom.

Similarly, the main examples of UK practices which South Africa could well adopt are:-

Using Person-centred care more widely and extending it, replacing the ‘medical’ model;

Dispensing with the trappings of the medical model such as the ubiquitous hospital-style

metal frame beds with cot sides, room layouts reminiscent of hospitals and military-style

uniforms complete with epaulettes and insignia;

Introducing end of life care;

Setting up dignity award schemes.

The International Conference of the South African Care Forum at the end of the visit was a rich source of

information and contacts. It was also an opportunity to present a paper on work in the UK and to

conduct 4 parallel workshops on the UK Dignity Challenges.

Several possible international collaborations stem from the study visit. Discussion has begun on several

of the items listed above, and also on the feasibility of a very exciting prospect, an international dignity

agenda. Dissemination of the findings of the visit began three days after return to the UK with an invited

paper at the first conference of the National Dignity Council.

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CONTENTS Page

SUMMARY 2

1. INTRODUCTION 4

2. DATA COLLECTION 6

2.1. Notes on selected visits, Johannesburg 6

2.2. Notes on selected visits, Cape Town 12

3. OUTCOMES and CONCLUSIONS 15

3.1 South African practices, strategies and techniques potentially effective in the UK 16

3.2 UK practices, strategies and techniques potentially effective in South Africa 19

3.3 Prospective collaborations 20

4. ACKNOWLEDGEMENTS and PRINCIPAL CONTACTS 21

4.1 Principal contacts 21

5. APPENDICES

A. Annotated schedule of all visits 24

B. 5th Annual Conference of Alzheimer’s Society South Africa 26

C. Notes of the Meeting at Cape Town University 26

D. Synopsis of the International Conference of the South African Care Forum 27

E. Workshops: ‘Dignity in Care – An Optional Extra?’ 29

F. Training Session on Person-centred Care 32

G. Dissemination 32

H. Bibliography 33

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1. INTRODUCTION

Increasingly aged populations worldwide place ever growing needs for care of the elderly which, coupled

with very desirable trends towards more respect for dignity and higher standards of care, entail greater

demands on staff and facilities. The problems are ubiquitous but solutions vary widely. Much can be learnt

from those proving effective in other countries. Experience shows that examining at first hand is the most

effective way of gathering such information for successful application at home. The Winston Churchill

Memorial Trust Travelling Fellowship gave an excellent opportunity to study this subject abroad.

The aims of this study were:-

a) To investigate methods, strategies and policies proposed, being tested or in use for care of the elderly.

The emphasis is on dignity and dementia matters and the potential for successful implementation in

the UK to achieve enhanced quality of care and cost savings.

b) To explore potential solutions to problems of care in multicultural and multiracial populations.

c) To exchange information, toolkits, tactics, strategies and policies.

d) To establish direct contact with centres of excellence and experts in relevant fields there.

e) On return, to disseminate the information gathered via the National Dignity Council, the North West

Network of Care Leads, conferences and journals.

f) Through my work in social care to apply the knowledge and experience gained for the benefit of the

local population direct.

g) To enhance my expertise and capability for the benefit of my work and my personal potential.

It was decided to make all the visits in one country, South Africa, centred on Johannesburg and Cape Town.

This made best use of time and funds available but encompassed major centres of excellence and key

exemplars of good practice, with a wide demography. South Africa was chosen because it is amongst the

most active countries in tackling aging problems in realistic but sensitive, forward thinking ways. It has a

good record of both research and implementation. It also offers good opportunities for comparisons with

the UK.

It was proposed to:-

Visit care homes and facilities, including domiciliary care, to see methods and practices in use and to

discuss care matters with staff and customers, particularly those which impinge on dignity;

Visit identified centres of excellence in relevant studies of care;

Meet key persons and exchange information , toolkits etc.;

On return, collate and analyse the information gathered;

Prepare a comparative study report including cost/benefit analysis;

Prepare and present or publish papers and presentation;

Implement trials of potentially successful methods and practices.

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On a personal level this study clearly had the potential to broaden my knowledge on innovative approaches

and implementation which promise significant benefits in UK use. The key benefits are enhanced care

quality, reduced costs and better ways to cope with multicultural populations. Another important task is to

strengthen links with key staff at institutions carrying out relevant research to help the flow of information.

As a result there will be a positive and sustained impact on my work and consequential improvements

locally in the quality, dignity and availability of care for the elderly and those with dementia. On a regional

and national level, via the North West Regional Network of Dignity Leads (which I chair) and the National

Dignity Council (of which I am a member) much useful information will be spread throughout the UK,

including details of contacts etc. This will be supplemented by conference and journal papers and this

report, bringing prospective real, affordable and practical benefits to the whole UK population. Further,

through the information, toolkits etc. already passed on to South Africa, there is the prospect of effecting

improvements there too and to sustaining improvements through future contact.

Having decided, in principle at least, what the study was to attempt, how and where it was to be carried

out, the next step was to add sufficient detail to derive a practical schedule with possible dates and to

begin making provisional travel arrangements etc. Surveying the literature clearly indicated that visits to

the Albertina and Walter Sisulu Institute of Ageing in Africa and the International Longevity Centre South

Africa at the University of Cape Town were essential and maybe to the University of Stellenbosch.

However, how to find which care organisations, care homes, care villages and so on to visit, how to get to

them, and perhaps most important of all, how to get permission to visit them? The internet came to the

rescue with what seemed like a miracle: whilst investigating the Eden Alternative, the name Rayne

Stroebel arose as a force in the improvement of care of the elderly. He responded passionately about

dignity to an email outlining the background and aims of the fellowship visit! It subsequently emerged

that he felt ‘we need all the help we can get to improve this’ and that he was founder and managing

director of the care organisation GERATEC, Regional Co-ordinator of The Eden Alternative South Africa, and

leading member of the South African Care Forum. (Not only did he give me a good deal of very helpful

general information and advice but was he prepared to give me the names and addresses needed, try to

obtain permissions to visit government subsidised homes, and arrange for members of his staff to escort me

and provide the transport. Serendipity indeed!)

He also mentioned the SA Care Forum Festival and Conference, to be held in early October at Stellenbosch,

near Cape Town, which would be very relevant and a rich opportunity to establish a wide range of contacts.

That settled the timing of the study, and by attending the conference at the end of the visit also allowed

the first dissemination of the results in a short paper, followed by workshops to discuss the Dignity

Challenges.

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2. DATA COLLECTION

Visits were made to 16 care homes and care villages in Johannesburg and Cape Town, chosen to

encompass a wide range in the social and affluence scales, to the headquarters and service centre of the

care organisation GERATEC, and to the Albertina and Walter Sisulu Institute of Ageing in Africa and the

International Longevity Centre - South Africa, both at Cape Town University. The annual seminar of the

Alzheimer’s Society SA, a GERATEC training session on Person-centred care and the International

Conference of the South African Care Forum were attended.

Each care home or village visit lasted between half-a-day to a full day, to capture the feel of the care

provided and of the environment. Nevertheless this inevitably gave a ‘snapshot’ view, only a small fraction

of the whole. Therefore, strong efforts were made to confirm observations at subsequent discussions. The

visits to Cape Town University, the Conference in Stellenbosch, the Alzheimer’s Society SA seminar and the

GERATEC training session at Pretoria were rich opportunities for this.

The following sections describe some of the visits to care homes and villages. The selection has been made

to illustrate particular aspects of care and does not imply any criticism of the other care homes and villages.

The nomenclature used in SA is similar to that of the UK, except the category ‘Frail Care’ (whose meaning is

obvious), and ‘Assisted’ and ‘Supported’ are differentiated by the extent of help needed. Thus ‘Supported

Accommodation’ would have staff present in the building; ‘Assisted Living’ would have an alarm system to

call for help from elsewhere. The term ‘Life-right homes’ is sometimes used and simply means homes

within a care village. (The table at Appendix A sets out the schedule of all the visits made with a note of

the facilities provided. Appendices B,C,D and E briefly describe the Annual Conference of the Alzheimer’s

Society SA, the visit to Cape Town University, the SA care Forum Festival and International Conference, and

the presentation and workshops on ‘Dignity in Care’ at that conference.)

2.1 Notes on a selection of the visits to care homes and villages.

JOHANNESBURG

The first group of homes visited are part of the Rand Aid organisation, Chief Executive Officer Zabeth

Zuhlsdorff and General Manager Aanda Mathews, which is one of the biggest providers in South Africa. It

was established in 1903 when two voluntary organisations merged their efforts in tackling the social

problems that existed on the Reef then. They have various homes and villages to suit different abilties to

pay.

2.1.1 Thembalini: The first home is at the low end of the scale, chosen to get a feel for the basic care

provided in South Africa. The size of everything is overwhelming, the compound, the outside space, the

rooms etc., but there was a warm welcome from the residents sitting outside in the sunshine. The

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discussions with the manager, Elize Roath, Pauline Hlatchwako (matron), and Lara Howitz (social worker),

were awe-inspiring. They talked with great passion about hopes and aspirations for the care of the

elderly. Their determination to make a difference was impressiveand their person centred care was

humbling. They loved the one page profile idea but hadn’t thought to include members of staff and then

match them to residents or to give individual time etc. They were very enthusiastic about those

developments. The discussion was going so well and then got evenI better but when a group of residents

joined to talk about their experiences. The relationships between all levels of the staff and the residents

was so natural and easy. They were happy to talk about life at the home and how being there had changed

their lives. Two of them had got married there! The activities provided were particularly interesting

because in South Africa the activity co-ordinators are qualified Occupational Therapists which really raises

the bar. The variety and personalisation of activities was very impressive (and impresses the residents too)

and they are well-documented in the care plans.

The only critism would be about the dementia unit. Fortunately this is now being updated, having had to

wait until funds were available. However, there is still a long way to go, away from the medical mode

entirely. All in all the visit was inspiring not least because of the friendly, welcoming atmosphere.

2.1.2 Elphin Lodge and the Ron Smith Care Centre: The complex is managed by Helen Petrie. It is higher up

the scale than Thembalini so it was interesting to see if there were differences in care and facilities. Again

the scale of the complex was overwhelming, both inside and out. It was very pleasing to see there were

cats (and geese)!

A residents meeting was in progress, which was

well-attended, really enlightening and

informative. They were very keen to tell their

stories and to talk about their day to day lives in

the care home. The camaraderie and sense of

community and belonging were particularly

striking.

Residents’ meeting

The village is quite self-supporting and, when necessary, residents move to the care home. There are many

amenities organised by various committees, including a cafe, snooker room and a church that both the

village and residents of the home use which encourages integration. There are about 280 people on the

site and security is excellent, as everywhere visited.

It was really interesting to learn how the village and care home were separated but integration was actively

encouraged, to build relationships and a unified community. Nevertheless isolation can be a problem in the

village because the average age is now much higher and mobility much lower than anticipated originally.

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The three units that make up the home are so

spacious! Several residents were keen to show

their rooms and talk about their life there. The

hands on care and was very impressive. Activities

were being done enthusiastically by everyone on

the dementia unit!

Personalised room

Clearly care is very much Person-centred; they use a version of one page profiles, but do not use profiles

of staff members to match them to residents. However, one-to-one time between staff and residents is

encouraged although it is not formalised or documented. They were very interested in the idea of

dedicated time per month.

Various day-to-day tasks were adapted to include residents, including the gardening by using raised beds

etc. Occupational therapists lead activities, some of which are done simultaneously, again meeting the

individual needs of residents rather than ‘one size fits all’. One of the ladies in the village was keen to show

where she lived and it was plain to see how much she loved living there and being part of the community.

She was able to remain independent with just a bit of support which at 80+ was a great achievement!

2.1.3 Inyoni Creek: An up market residential village in which all the houses are privately owned and which

is part of Rand Aid. There is a committee to provide mutual support and which also raises money for other

parts of Rand Aid. The community spirit was amazing! They welcome all new people to the village,

including residents of Tarentaal, by greeting them individually and taking them to all the activities to help

them meet the rest of the residents and to settle in and feel part of the community.

2.1.4 Allen Park, Kempton Park: This is part of the Council for Aged Kempton Park and is a mixed complex

of Life-right homes, including Supported Accommodation, Assisted Accommodation, a Care Home, and Frail

Care. There are also geese! Frances Maree, who is the Health Care manager, has only been in post since

May 2014. She is very keen to update the accommodation that currently follows the ‘medical’ model and

is not inviting. She has also been busy raising funds recently for Thembalini (see 2.2.1 above) and achieved

an amazing 160,000 Rand!

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A meeting of about 200 residents was taking place and listened to my short talk which I was asked to give

without any notice! Once again the warm welcome was overcoming. The residents spent time showing me

their rooms and their lounge and talking to me, which was the best part of the day. One of the residents,

Charles Wilcocks showed his amazing paintings and a book that has recently been published about him.

André Naudé, the CEO of the Council for the Aged Kempton Park, is really committed to raising the

standards at the home and the difference he has made can be seen already. Lunch (prepared by GERATEC’s

Catering staff) was really well balanced and enjoyable……….. Unfortunately, too tempting for the good of

the waistline!

2.1.5 Daveyton: This is an African home and Day Centre, the only ones in the Daveyton area. The

manager, Jackie Smit, explained that a research programme was carried out by retired professionals in the

early 1980s. The social worker in that group, Mrs Rose May Dabula, led the entire process. They

recognised a need for an old age home, after seeing many elderly people suffering silently in the hands of

their families, friends etc.

Most were homeless, destitute, frail, bedridden, vulnerable and needy,

and their well-being was being taken for granted by society. Further,

they were abused financially, emotionally and physically.

Consequently the Daveyton Society for the Aged committee was

formed and later the first building was constructed by the local

municipality in the late 1980s and accommodated the first Luncheon

club, Zakheni, which was initiated by Mrs Dabula, ensuring that local

people had at least one good meal a day. There are 24 residents at

present including 2 couples. There is a waiting list of over 100 people

which confirms the need for more homes.

A wonderful Day Centre where you can

take your grandchildren

The Manager, Jackie Smit, dreams of building another wing which would house another 28 but even if it

were realised, there would still be massive shortfall. This is such a shame as the residents are very happy

in the home. The Society also provides meal parcels and a few medical essentials to approximately 120

elderly in the Daveyton community. There are a lot of volunteers from the locals, including young people.

They are really appreciated by the staff particularly because they can spend more one-to-one time with

the residents. The bedrooms are basic but beautifully kept.

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Activities were in progress at the time of the

visit and good Person-centred care was very

evident. Security is an issue, as in all the homes

and villages visited, but the preventative steps

taken work very well.

Security is very evident

The Day Centre is a lovely purpose- built

building and very well used by the local people.

They do lots of arts and crafts which they sell in

the community to raise money to help support

the care home.

(I bought one of the rag rugs!)

Ladies working away having fun whilst raising money for the poor

2.1.6 Cosmos Waverley Gardens: This home is part of the Flower Foundation Organisation and is a home

for people with dementia. Sue Brandon, the Matron, is an active member of Alzheimer’s South Africa and

was at the Alzheimer’s conference earlier in the week and asked me to visit her home. The grounds and

gardens are spectacular and much used by the residents as they are secure.

At the front door there is a ‘Worry Cup’ for

families to leave their troubles on the doorstep

when they are visiting – a lovely idea!

Several residents share each room and the

medical model is followed in most of them at

present.

Leave your troubles on the doorstep

However, work is in progress to personalise the rooms. Because the buildings are listed it has been

challenging to make the changes but several rooms have been finished and the effect was a bit like walking

into Narnia! One resident was inseparable from her dog. Not only was able to bring her dog to the home,

but a small secure garden accessed from her room had been especially erected for the dog!

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The high spot of the afternoon was discovering an

old car in the garden kept there for residents who

ask to go out for a drive to sit in! This technique

has been reported but to see it in action was

inspiring.

2.1.7 Rynpark Retirement Village: CEO Joe Duvenage, manager Susan Nortje. This is a complex of 7 units

housing about 700 residents in total. It has 1, 2 and 3 bed cottages, Assisted living, Life-right houses and

Frail Care.

There is a new vegetable garden in which the residents were thoroughly enjoying working. They went to

great pains to describe the planting calendar! All the fresh produce is then used in the kitchen.

There is a library and a wonderful shop, stocked by

donations from local people, residents and their

families.

Anyone would want to spend hours there just

looking around, which is exactly what the residents

do! The money raised is used to support the

residents in Frail Care with items such as

wheelchairs etc.

Wonderful shop

Again the bedrooms seem to be furnished on the medical model but what most make them look like that

are the hospital style metal-framed beds. Beneath the surface the rooms are nice, clean and well-kept but

would be more attractive and moreover more comfortable if personalised rather more. There is much

‘work in progress’ including an outside space for barbecues and flower beds raised so that tending them is

easier.

2.1.8 Pretoria settlement: The settlement is predominantly for older white people living in Pretoria and

consists of very basic tiny houses which are referred to as ‘matchbox’ houses. The social worker, Sue

Bekker, is an amazing woman whose dedication and enthusiasm are humbling.

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This was the hardest and most challenging

experience so far because the ladies were

‘genteel’ and reminded me of my mother. The

people there are living on 1350 Rand a month –

about £80. Their houses are very basic but they

were proud to show them and eager to say how

lucky they were to live there. As everywhere the

houses are well secured against intruders.

Matchbox house

2.2 Notes on a selection of the visits to care homes and villages

Cape Town

2.2.1 Ikaya, Ekuphumpleni African home: The home is in the middle of the local settlement.

There are 129 residents housed in 3 blocks: Block

A - Frail ladies, Block B - Mixed abilities (including

physical/learning disabilities) and Block C-

Independent (but support available if needed).

Residents can move to another Block if their needs

change. They have to be over 60 years old and

need support but can be referred by Social

Services or by themselves. There are 2 or 3

qualified staff and the rest are carers.

Washing out to dry on the security fence

The manager qualified mostly in England and was a great fan of Dawn Brooker and Tom Kitwood at

Bradford. So expectations of Person-centred care were suddenly raised but were fully borne out.

Residents can go to bed and get up when they want rather than having to fit in with the night or day staff

routines. It was interesting to learn about African culture, particularly how it is changing and it is now more

acceptable to put your elders into a care home if you cannot manage to care for them at home anymore.

Unfortunately the building is very old and the conditions are not really as strived for in the UK. The rooms

are very basic but very clean. The washing facilities etc. are shared, meaning a lack of privacy for the

residents. The public address system used to contact staff was very intrusive and used frequently. There is

Still a lot of work to be done but certainly the spirit of change was evident.

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On the day of the visit a group of fashion

students came to the home to show their work

but unfortunately their samples were not

ready so they sang for the residents instead

which was wonderful both to watch and hear.

College students singing for the residents

2.2.2 Huis Uitsig: This is a government-owned home which is run by the church and is part of the Badisa

group (see also 2.2.3 below). Huis Uitsig is divided into Frail Care, Assisted Living and Independent Living.

There are 250 residents in all and. Frail care is spread over 5 floors and has 84 residents. The first and third

floors are for people with dementia. Those on the first floor are in the later stages and need constant care;

those on the third floor manage reasonably well on their own with some support. The other floors are for

residents who need various levels of support. There is also a ‘sick bay’ for residents who become ill and for

respite care of residents discharged from hospital. Unusually there is a CCTV monitor in every office

covering all the rooms. This system is intrusive, and as the staff know where all the cameras are, it is

unlikely that any abuse would be caught on camera. Also the response to an emergency would be much

quicker if the supervisory staff were close to the rooms they oversee instead of in an office or another

floor.

Most of the rooms are shared and there are communal bathrooms and toilets. Residents are encouraged

to bring personal things from home to brighten up their rooms. On the outside of each door there is a mini

one page profile and the care plans are kept in the rooms. There is a bird house in the garden where

residents can go to watch the birds.

The staff management is interesting: the sisters are employed by the home but the carers are outsourced

to GERATEC who recruit, train, manage, pay and discipline them. Originally there was confusion about day-

to-day management and to whom they reported, but it now seems to be working well. The carers are well-

trained and, unlike using agency staff, provide good continuity which is so important for those with

dementia.

2.2.3 Monte Rosa: Finding a little spare time, this visit was made ‘on spec’ and had not been arranged for

me. This home is also one of the Badisa group which has 47 care homes, 2 children’s homes and 2

rehabilitation homes for people with alcohol problems. The group also has 27 service centres which

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provide support for the elderly living in the community including provision of meals, cleaning, medical and

pastoral care, sports and social activities.

At Monte Rosa the staff consists of carers, enrolled nursing assistants, sisters and staff nurses. There are

approximately 110 residents at any one time made up of 95% white and 5% coloured. The manager, Clive,

pointed out that they would be happy to accommodate black residents but this was difficult because of the

cultural differences. (The black community traditionally keep their elder relatives at home) but he agreed

that this is slowly changing.

The rooms are mostly single but there are double

ones and one group of 4 men sharing and another

group of 4 women sharing. The residents are free

to choose but the frailer ones tend to get up at

7.00am and go to bed at 6.00pm.

3 ladies sharing a room – ward style

(Many thanks to Valerie McMahan who made this visit possible. I called there ‘on spec’ and assumed she

was the official secretary/receptionist. It turned out that she is a resident in the independent living group,

was formerly a secretary, and just enjoys doing the work!)

2.2.4 Mountain View: This establishment has independent living, assisted care (with alarm buttons),

independent flats, frail care and a dementia unit with 36 residents in the later stages of dementia. CCTV

cameras are used in the corridors but not in resident rooms.

The staff is made up of nurses, student nurses and carers. There is a coffee shop and hairdressers. There

has been a recent, major reorganisation which is working well. The frail sections of each unit have been

combined at Mountain View. Residents are encouraged to bring their own furniture to the home. Catering

is outsourced to GERATEC: the residents were obviously enjoying their lunch very much! The arrangement

of the dementia unit, Flamingo, was very ‘medical’ but there were some really good personal interactions

witnessed during lunch.

2.2.5 Huis Ina Rens: This is a small for piece of heaven for 11 to 15 people with dementia. It is managed

by a young woman called Audrey Vermeulen, an occupational therapist. Initially she had no management

skills but was overflowing with enthusiasm and dedication to improving the lives of the people she cared

for.

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Sharing rooms, although often not regarded as the best model, works very well here because the rooms

are tastefully personalised. As well as spending a lot of time in a secure garden area, most residents go out

into the community at least daily with the carers helping to maintain their independence.

Everyone is involved in activities of daily living

which they thoroughly enjoy: helping to prepare

the meals, laundry, setting the tables etc. Those

who are not able were included, close by,

watching.

Enjoying preparing the food

A couple of the residents had dogs before they came to the home and were able to bring them. They have

to care for them but the other residents love having them around! A new resident is expected and,

because he is so devoted to his dog, his family is very relieved because he will be able to bring his dog.

The atmosphere at the home was calm and quiet, the residents were all going about their ‘chores’ happily.

Wonderful to witness and what an excellent last home visit!

3. OUTCOMES and CONCLUSIONS

It has been a remarkable year since I learned that I had been awarded a Winston Churchill Fellowship.

After the initial period of euphoria mixed with a tinge of waking up with the what- have-I-let myself-in-for

feeling, it was down to work: six months of planning, making connections with South Africa, learning a lot

about the country, its people and environment. And at the same time I was doing my job and all my other

usual activities. Then the reality, when I actually got there. My perceptions of how it was rapidly began to

change, an exciting but in many ways a humbling experience. This certainly bore out my contention in my

application for the Fellowship that you have to collect information at first hand to begin to understand. I

shall always remember the conditions under which some people live. The ladies who live on £80 a month (a

tiny amount even taking the lower cost of living into account) and yet are happy and moreover feel they

are lucky. The people in villages who work hard making things to sell for the benefit of their neighbours.

Contentment and happiness, even when helpless and hopeless. What an inspiration to us, to try a bit

harder to make a difference. Yes, I learnt a great deal about care in South Africa. Ideas which, if only we

can persuade ourselves to take them on board or perhaps simply find ways to implement them, can

improve our care without any increase in cost. I sincerely hope that South Africa can use some of the ideas

and tools I gave them; as Rayne Stroebel said “we can use all the help we can get”.

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The aims for this study were based upon two fundamental premises which were formulated on the basis of

information gathered mainly through the media, the library and the internet, but nevertheless about a

country a quarter of the way round the world away and in the southern hemisphere. Arguably the most

important fact established during the visit was that those premises proved correct. Namely, that care of

the elderly in South Africa has very similar problems to those in the UK, and that South Africa has

developed and is developing practices which are potentially useful here. The following sections highlight

such practices and give examples of UK practices which are potentially useful in South Africa.

Preparing this report has entailed firstly looking back at the aims set out at the beginning of the fellowship.

Secondly reviewing all the notes made during preparation, the visit to South Africa and subsequently, re-

examining all the papers and photographs (some 400 on care matters) collected, recalling as far as possible

my memories; and lastly comparing expectation with achievement. Too often the comparison is

disappointing but this time the result is surprisingly agreeable: at least some progress has been made on

all fronts. Naturally there are parts where it would have been interesting and potentially useful to collect

more objective data so that, for example, cost/benefits could be assessed in concrete terms, but

realistically there was not nearly enough time to do that. In other parts, such as dissemination or

implementation, it is an ongoing process and it is too soon to see the full outcome, especially in

implementing substantial changes in care practices, attitudes or cultures. But, watch this space!

3.1 South African practices, strategies and techniques potentially effective in the UK.

Three things are particularly striking in South Africa, the strong community spirit, the strong family culture,

and strong spirituality. All are enviable and all were evident in the UK at one time but have declined

substantially. Whether they will recover remains to be seen. It seems to take a national emergency to

bring them to the fore, as was very obvious during the blitz of World War II, but there may be other much

less drastic ways of encouraging them.

The following are matters which could be implemented on a much shorter timescale and are in rough order

of priority and/or likely timescale for implementation.

3.1.1 More relaxed attitude to risk: South African homes commonly allow residents pets this occurs partly

because South African care homes are not regulated although regulation is being considered. The

advantages in improvement of residents’ quality of life and self-worth through such practices as allowing

pets and allowing residents including those with dementia to help with preparation of meals, cleaning and

laundry are abundantly clear and offset the risks handsomely.

In the case of helping with household tasks there is also a cost saving. However, some changes in UK

regulation and legislation will be needed but nevertheless should be made.

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3.1.2 Comprehensive service organisations: There are several comprehensive service organisations in

South Africa such as GERATEC and Badisa, which enable outsourcing of support staff and meals. The

experience is that, once everyone working at the care home or village is clear who is responsible for what,

the arrangement works very well. The service organisation provides the care support staff, recruits, trains,

manages, pays and disciplines them. The main advantages are that the care home/village manager can

concentrate fully on the care of the residents. Further the standard of training of the outsourced staff is

high because it is easy to monitor its quality. Note it is much better than using agencies for making good

shortages of staff, which at best is a very ‘making-do’ solution and does not offer the all-important

continuity. The same advantages can be expected in the UK.

3.1.3 Use of shared rooms: In South Africa shared rooms with up to four residents or more are common.

The potential advantages in terms of mutual support and social interaction are obvious and, judging from

the happiness of residents in South Africa, more than offset the loss of privacy. Residents can personalise

their part of the room as they wish without problem. (It is ironic that in residential homes shared rooms

used to be the norm in the UK not so very long ago.) The biggest advantages accrue to couples living in the

home (wed or not, of the same sex or not). And residents who want to establish sexual or physical

relationships can then pursue a normal relationship much as they would outside of the care home

environment, which would appear to be their human right. (Note that both members of a couple do not

have to require residential care, say, because of infirmity or dementia.) There may be a capital cost saving

for en-suite facilities but some changes in regulation and maybe in legislation will be needed.

3.1.4 Grandparents and grandchildren living in care homes: This is potentially an attractive possibility in

South Africa because of the numbers of children orphaned by AIDS. A pilot study is soon to be made.

Although the numbers are relatively small in the UK, there are other situations where children are cared for

by their grandparents, perhaps because the parents work full-time, travel frequently, work a long way from

-home etc., perhaps it is a single parent family and the parent has more than one job to make ends meet.

Thus it is possible that the arrangement might work well. It may enhance the quality of life and self-worth

of the grandparents and of other residents at the home too, although they might prefer peace and quiet!

It too does require shared rooms of course. The pilot in South Africa will indicate whether this is worth

pursuing.

3.1.5 Qualified Occupational Therapists leading activities: This works well and is the norm in South Africa.

It has the advantage that the leader is properly trained to ensure the physical well-being of care home

residents. He or she can choose physical activities appropriate to each individual, and can recognise any

individual physical problems correctly and remedy them suitably. The therapist will still need to have

suitable artistic skills and imagination to engage the residents.

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3.1.6 Imaginative ways of engaging residents: Two examples stood out in South Africa, both very popular

with the residents. They were the old car in which care home residents can go for imaginary rides and the

vegetable garden worked by the residents and its produce supplying the kitchen. Both enhance the quality

of life of residents. The second ensures physical exercise in fresh air and increased self-worth as well. Such

ideas are well worth trying, adapted to the smaller UK homes as necessary, for example by growing

vegetables amongst the flowers.

3.1.7 Paying towards the costs of taxis to travel to/from home: Travel does not usually cause the same

sort of difficulties in the UK as in South Africa because public transport is better and more people have

their own transport. Therefore the need for taxis is likely to be rare. But the example is relevant because it

illustrates ‘thinking-out-of-the-box’ to reach a solution which suits everyone involved. Staff can get to or

from work when needed. Residents don’t have to be woken at 4.30 am so that night staff can complete

their tasks before the end of their shift (reallocation of duties is an alternative solution but is not well

received by day staff who feel they are then overworked.) The manager can get his staff when he wants

them and can improve the quality of life of the residents. No doubt there are many apparently intractable

problems in managing care homes that can be solved elegantly by such innovative or lateral thinking.

3.1.8 Community support of care homes and individuals: The amount of hard work and time which goes

into this in South Africa is amazing. The outcome in terms of the quality of goods produced and the funds

raised by their sale is good, sufficient to raise the standard of living from subsistence level to reasonably

comfortable. It is unlikely to be emulated in the UK in the future unless there is a step change in attitudes.

However there is a glimmer of hope, in the form of Dignity Champions. The scheme was initiated by the

UK government and fostered by the National Dignity Council several years ago with the idea of creating

wide interest in dignity in care, leading to an army of people who would campaign vigorously and make a

substantial impact. Recruitment was online and simple, and some 50,000 people have signed-up to date.

However, the impact is not very obvious and even the numbers of Champions who are or could be active is

in doubt. Nevertheless the prospects are improving, steps are being taken to introduce organisation

through the regional Care Leads Networks. If this can be achieved, there is a real prospect of harnessing

the effort and getting whole communities involved in supporting care within their community.

There are several other possible items which depend upon community or family spirit, so their introduction

is likely to take a good deal longer. Examples are supporting elderly relatives within the family, and the

beneficial effects of increased spirituality. There are good prospects of influencing the community spirit at

least to some extent within a relatively short time scale. But it seems unlikely that neither family spirit nor

spirituality will change much for several generations. Similarly there is little prospect of young people

returning to their home communities when their education and training are completed, which is common

in South Africa.

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3.2 UK practices, strategies and techniques potentially effective in South Africa

Much as the demise of the Medical model, the trappings of regimentation and, anything reminiscent of

hospitals would be desirable in the interest of dignity and Person-centred care, they are firmly established.

Some care staff defend them strongly and removing them is likely to be a long slow process. In contrast,

fortunately, Person-centred care has a good foot-hold in South Africa. It goes without saying that every

effort should be made to extend it to all care; having seen the enthusiasm, commitment and vigour of the

leaders in the field, there is little doubt that this will happen.

The following are less well known but bring substantial benefits, and have been recommended to those

leaders. They are in rough order of priority.

3.2.1 Dignity award schemes: These are a simple but effective and inexpensive way to draw attention to

all aspects of dignity. They are best treated as a way of helping to improve perception of dignity and ensure

that all care practices fully respect dignity, rather than a competition to find a winner. A Dignity

Champions scheme has similar attributes and extends the influence beyond care organisations to the

public. It should be particularly easy to establish in South Africa because there is a culture of helping

families and neighbours and communities already help care homes/villages. (I have already begun

discussion with GERATEC on these matters with a view to collaboration via the North West Dignity Leads

Network and the National Dignity Council.)

3.2.2 One Page Profiles, including matching residents to staff using their respective profiles: A few care

homes already use similar profiles but do not prepare profiles of their care staff and then match residents

and staff by their common interests etc. Nor do they make sure that each resident can spend some time

every month on their special interests. Both practices are very beneficial. Those care homes that already

use profiles were keen to exploit them further.

3.2.3 End of life care planning: In South Africa there is no specific planning of end of life care. The care

given is whatever seems appropriate at the time. Several care homes were particularly interested when

we discussed this matter. (I have passed their contact details on to the UK Gold Standard Framework Team

who have done much work on the subject.)

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3.3 Prospective collaborations

3.3.1 GERATEC/SA Care Forum and Manchester C.C: Dignity in Care Homes Forum

Rayne Stroebel, MD of GERATEC, is keen to start a ‘Dignity in Care Homes Forum’ in South Africa in

conjunction with Manchester City Council along the lines of the North West Network of Dignity Leads.

3.3.2 GERATEC/SA Care Forum and Manchester City Council: International Dignity Agenda

Rayne Stroebel also hopes to work in partnership with the Council to explore the feasibility of an

International Dignity Agenda.

3.3.3 SA Care Homes and Gold Standard Framework team: End of life care planning

During the visit several care homes expressed a strong interest in developing End of life care planning. (I

have passed on their details to the Gold Standard Framework team who I have done a great deal of work

with on this subject.)

3.3.4 GERATEC and UK North West Dignity Network: Dignity Award Schemes

The natural progression from GERATEC’s work on this subject is to work with the UK through the North

West Dignity Network and the National Dignity Council. (I have already started discussing this with Rayne

Stroebel.)

3.3.5 University of Cape Town and NW Care Leads Network: Measurement of Loneliness and Isolation

Loneliness and the feeling of isolation can be serious problems particularly in the elderly, leading to a

variety of unpleasant and potentially harmful disorders such as hallucinations and clinical depression.

Treatment of the latter is particularly difficult in the case of people who live alone because of the possible

harmful side effects and the risks of over-doses, accidental or deliberate. At present there are no objective

measures of either loneliness or isolation. If there were, accurate measurement would be possible and

finding ways of alleviating the conditions more effectively than at present more likely. Research on this

topic is needed and a feasibility study and literature review would be a wise starting point.

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4. ACKNOWLEDGEMENTS and PRINCIPAL CONTACTS

It is difficult to find words which fully express my gratitude to the Winston Churchill Memorial Trust for

giving me such an amazing opportunity to further my knowledge of the care of elderly people by seeing

it at first hand in a country thousands of miles from home, by meeting so many wonderful, caring

people and learning so much from them. I hope I have been able to repay some if the generosity of the

Trust and those people I met by passing on some of my knowledge and experience to them, and I will

continue to do that in the future by including them in the dissemination of my Fellowship experiences.

Many, many thanks to the wonderful team at Great Smith Street who have done so much to smooth my

passage, ever friendly and helpful.

I am also very grateful to the Manchester City Council who enabled me to take up the Fellowship by

allowing me to take 6 weeks leave of absence, by using annual leave en bloc and stretching the rules of

flexible working to accumulate sufficient time.

I should also like to thank the large number of Care Home/Village managers I met who so readily helped

me collect the information I needed. All were very hospitable and interested in what I was doing, both

in South Africa and in the UK, and I believe any of them would be useful contacts or potential

collaborators in the future. They are not listed here or in section 3.1 above simply because of their large

number.

4.1 Principal contacts made

4.1.1 GERATEC and the South African Forum, SA Rayne Stroebel, Managing Director of GERATEC. Rayne established Catering Services CC in 1996 to

provide food to retirement homes and long-term care facilities for elderly people. In 2000 scientific

research was begun on the nutritional status of the elderly and the company changed its name to

GERATEC, reflecting a much wider brief. It is an acronym for Gerontological Research and Training,

Education and Catering Company. The company offers a holistic suite of services, the only full-service

provider of person-centred care in South Africa, with compassion, respect, integrity and innovation key

attributes.

Margie Van Zyl Chapman, Director of Strategic Partnerships at GERATEC. A social worker by profession,

she is also the Founding Chairperson of the South African Care Forum, Chair of the Board of Directors of

the International Association of Homes & Services for Ageing (IAHSA), and principal organiser of the

Forum’s festival/conference.

Rayne and Margie were enormously helpful and, not only prepared to suggest care homes etc. to visit

but also to make the arrangements and to arrange transport and an escort. Rayne Stroebel is a mine of

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information, dedicated to person centred care and very hospitable too; he is keen to collaborate (see

3.3 above). He looked after me incredibly well and basically made achieving the aims of my visit

possible for which I am eternally grateful. Margie was incredibly supportive and friendly – the perfect

host. We are all still in regular contact and hope to work together again in the future.

Denell Rossouw, Business Development Manager at GERATEC, personally provided excellent door-to

door transport and came on all the visits in the Johannesburg area. She was a delight to be with,

another mine of information, very hospitable and quickly became a firm friend, still regularly in contact.

4.1.2 University of Cape Town, SA

Professor Monica Ferreira, President of the International Longevity Centre South Africa (ILC-SA) and Co-

President (with Baroness Sally Greengross, ILC-UK) of the ILC Global Alliance. It transpired that

Professor Ferreira was about to retire and that Professor Kalula was essentially taking on her

responsibilities at the university. It remains to see whether Professor Ferreira continues to work with

the ILC since she regards that as volunteering!

Professor Sebastiana Kalula is Director of the Institute of Ageing in Africa and Senior Consultant on in

Internal Medicine and Geriatrics and Director of ILC-SA. Her current research areas are quality of health

care, falls in the elderly and the epidemiology of dementia.

I am very grateful to Professors Ferreira and Kalula for generously giving their time to discuss both their

work and mine, discussions which were continued later at the South African Care Forum Festival.

(The literature search also pointed to Professor Botman, Rector and Vice-Chancellor of Stellenbosch

University, whose vision led to the HOPE project, one aim of which was to promote human dignity.

Unfortunately Professor Botman died unexpectedly in June 2014 and it was not possible to find a

suitable alternative there in the time available.)

4.1.3 Alzheimer’s Society, SA

Denise Fredericks, Co-ordinator: Alzheimer's SA in Pretoria. She sked me to present at the 2nd World

Conference on Healthy Ageing, which is being held in Johannesburg 2015, from end July - 2

August. Unfortunately I had to decline as my daughter is getting married then.

Jill Robson and Denise Claassens, Alzheimer’s Society SA. We had helpful conversations at the

Conference.

4.1.4. Eden Alternative, GB & Ireland

June Burgess. I first met June in Manchester when she came to talk to the NW Dignity Leads Network. It

was good to continue our discussions in Cape Town at the conference.

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4.1.5 ‘Evolve Pilates & Beyond’, SA

Victor Southwell, Owner and Director. He played a wonderful supportive role. He always had a smiling

face and was happy to talk and make me feel welcome and comfortable. We continue to converse

regularly on Facebook, putting the world to rights!

4.1.6 Helen Sanderson's Associates, UK

Helen Sanderson kindly gave me a wealth of information and material, particularly about One Page

Profiles, which I was able to share with the SA Care Homes with great success.4.1.7 Rand Aid, SA

Zabeth Zuhlsdorff, Chief Executive Officer of Rand Aid, was extremely helpful in arranging the visits to a

number of the homes in her organisation; very caring and intent on improving all aspects of care. She

generously gave a good deal of her time to talk about the homes and answer questions, and was keen

to hear any comments or observations.

4.1.8 Southern Cross Care, South Australia and Northern Territories

Andrew Larpent, Southern Cross Care, South Australia and Northern Territories. We had much to talk

about as he was a Winston Churchill Fellow. We are still in contact and I have facilitated association of

his branch of ‘Dignity in Australia’ with the UK National Dignity Council.

4.1.9 University of Rochester, USA

Dr G Allen (Al) Power, Clinical Associate Professor, University of Rochester, USA. Al is a specialist in

dementia and some other aspects of elder care, director of the Eden Alternative and an Eden mentor.

4.1.10 Jennie Maurice Green, SA, teacher and artist. I was given Jennie’s details by another Churchill

Fellow as she was a possible contact for school children who might undertake the test for the Dignity

Badge. The preparation for this test is an excellent introduction to Intergenerational work.

Unfortunately it was not possible to take this project further at present but she has become a good

friend and was a wonderful guide to Cape Town.

4.1.11 M'nora and Avie Srineevassan, SA. I met these wonderful sisters in Dubai on my way to South

Africa. I found out they lived in Johannesburg and so we arranged to meet when they got home. They

collected me from my hotel and took me to their house where I met their younger sister Vasanti who

has 2 children one of whom is a Brownie! I instantly thought of the Dignity badges I had brought with

me and so after talking to the Brown Owl, her pack is now working towards the Dignity in Care Award

badge which I developed as part of my Intergenerational work.

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4. APPENDICES

APPENDIX A: Annotated Schedule of all visits

Johannesburg

M= Mixed abilities Ind. Assist. Support. Care Frail Dementia Village

Thu 4/9

Rand Aid:-

Thembalini M

Fri 5/9

Rand Aid:-

Elphin Lodge & Ron Smith Care Centre

Inyoni Creek

Tarentaal Village

Wedge Garden Treatment Centre

Service Centre Headquarters. Meals and Laundry

Tue 9/9

Council for the Aged, Kempton Park Allen Park Frail Care Centre

Wed 10/9

Alzheimer’s Society SA 5th Annual Seminar, Sandringham

Fri 12/9

Daveyton Society for the Aged African Home & Day Centre

M

Flower Foundation Organisation:- Cosmos, Waverly Gardens

Mon 15/9

Rynpark Association for the Aged Retirement Village

Settlement for white people living in Pretoria

Tue 16/9

GERATEC Person Centred Care Training session, Pretoria

Anson Holdings San Serino Retirement Village

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Cape Town

M= Mixed abilities Ind. Assist. Support. Care Frail Dementia Village

Fri 19/9

Ekuphumpleni – Ikaya African Home

M

Mon 22/9

Badisa Group Huis Uitsig Govt/Church Home

Tue 23/9

Badisa Group Monte Rosa Residential Home

M

Fri 26/9

Helderberg Society for the Aged Mountain View Govt Home

Mon 29/9

Afrikaans Christian Women’s Assoc Huis Ina Rens Home for people living with dementia

Thu 2/10

Cape Town University: The Institute of Ageing in Africa and the International Longevity Centre SA

Stellenbosch

Tue 7/10 - Fri 10/11

South African Care Forum Festival and Conference 2015 ‘Celebrating the Richness of Ageing’

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APPENDIX B: Notes on the 5th Annual Conference of the Alzheimer’s Society SA

I attended the conference at Gauteng today “Dementia: can we reduce the risk?” The First Guest

Speaker started at 8.00 a.m.!! (None of our 10.30!) and it finished at 3.45 p.m.

It was a very full day with very interesting/inspiring speakers.

My favourites were:

Ms Hannah Raath (Biokineticist in private practice) who had carried out a study on 2 different

methods of daily exercise and how they affected the incidence of falls.

Dr Michael Huth (Department of Neurology, Wits) who talked about the confusion between

diagnosing Normal Pressure Hydrocephalus and Dementia.

Ms Ruthann Sedgwick (Speech and Language Therapist/Audiologist in private practice) who gave an

amazing talk about ‘One Swallow does not make a Meal’ and how to make thickened meals look

attractive and why people need soft food. I could have listened to her all day!

Sister Elsie Etsane (Registered Nurse and Manager of Kopano Maatla Home Based Care Service,

Attridgevill) who talked about the cultural issues that are preventing dementia from being

diagnosed in some areas of SA – very often people are just called witches. She was very inspiring in

how she was approaching the issue.

It was lovely to have Denell with me; we also met some of the managers who had shown me their

homes. All in all a very thought provoking day and very tiring!

APPENDIX C: Notes on the meeting at Cape Town University

Faculty of Health Sciences, Groote Schuur Hospital, Cape Town

Thursday 2 October 2014

Professor Monica Ferreira, Director of the Albertina and Walter Sisulu Institute of Ageing in Africa

Professor Sebastiana Kalula, Director of the International Longevity Centre South Africa (ILC SA)

Dr Lawrence, visiting from Nigeria

I. Gillian outlined her work and described the purpose of her visit to South Africa and various

items which stood out in her visits to care homes.

i. Waiting lists to enter homes: these can be misleading since some may not want to go into the

home when the time comes.

ii. Grandparents living with their grandchildren in care homes, for example, when the parents have

died: some grandparents prefer peace and quiet; care homes may not be the solution.

iii. Isolation/loneliness is a problem but is difficult to measure objectively. Some data is being

collected in SA and a pilot study made at Sea Point.

iv. Funding is more easily found for teaching than research.

v. Cultural and financial aspects keep people in their homes. (In Nigeria most people stay at home

and the emphasis is on home care; there are day centres, and a large Federal government

training program.)

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vi. Most homes are in the white suburbs; language and travel present problems of integration.

vii. The custodial (‘medical’) care model is still in place.

viii. In villages people are looked after collectively; young people return to their villages when

trained or graduated.

ix. Australia is well advanced in care of elderly.

x. Spirituality is common throughout Africa; Women’s groups in churches look after people.

xi. The government is campaigning on some care matters, for example abuse of elders, but there is

a strong disparity between health and social care; in any event rules and regulations do not

solve problems of care.

xii. End of life care plans are not used but it was thought that they might be useful in some

circumstances.

xiii. Professors Ferreira (Co-President of ILC Global Alliance) and Kalula, representing ILC SA, are

shortly meeting with ILC UK and Baroness Sally Greengross (Co-President of ILC Global Alliance)

at the House of Lords to discuss ILC matters.

APPENDIX D: Synopsis of the South African Care Forum Festival and Conference

“Celebrating the Richness of Ageing” October 2014

The Festival was intended to offer much more than a traditional conference and included music, art,

and theatre, as well as a full academic programme which incorporated a broad range of topics from

research through wellness, dementia and care of the elderly to sexuality in old age. It was a delightful

touch that the entrance and driveway to the conference hall were ‘yarn-bombed’ with long scarves in a

rainbow of colours. 2 kms of knitting by residents in care homes across South Africa, just one example

of community involvement. It was a truly international event with delegates from 12 countries, giving

excellent opportunities for making new contacts, continuing through the evenings with some social

events and ad hoc groups dining together in one or other of the many restaurants in Stellenbosch.

Since there were many simultaneous presentations it was possible only to hear a sample. The following

items are intended to capture the essence, rather than give a comprehensive report.

Jan Montague, President of Whole-Person Wellness International, USA : ‘Energise your life – Whole

person wellness for optimal ageing‘

The premise was that wellness is perception-based and perception is difficult to change if perspective

remains the same. H L Dunn, 1959, defined wellness as ‘an integrated method of functioning oriented

towards maximising the potential of which a person is capable within their environment’. Several

studies confirm that many factors contribute to longevity: activity, strong social support,

intellectual/vocational activities, belief in your own wellness, and social contacts.

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Significantly isolation is a negative factor. It is interesting that nutritional supplements appear to have

no effect, but good nutrition and strength training increase gait velocity by nearly 12% and strength by

113%. (The latter will affect incidence of falls considerably, see below)

Moral: Choose friends who are well.

Professor Sebastiana Kalula, Cape Town University and Yolande Brand, Occupational Therapist,

GERATEC: ‘Falls reduction in older people’

Loss of balance almost inevitably means hitting the ground in both young and elderly, and in the latter is

a major cause of morbidity and mortality. The incidence rises with age, more so in women than men

although the latter have more fatal falls. There is a vicious cycle: falls lead to loss of confidence, less or

no walking and social withdrawal, leading to a higher risk of falling. The consequences of falls are

serious. If you can’t get up and lie for over 1 hour, pneumonia, dehydration and pressure sores are

likely. Bruising of the wrist, hip or spine may occur and 6% require hospital admission. 2% are hip

fractures, of which 60% suffer loss of mobility and 25% die. To avoid falls needs good sight, hearing,

muscle strength, sensation and neurological reactions; all of which deteriorate with age, but most of

which can be improved. There are also behavioural, environmental and socio-economic factors.

Combined, the factors can increase the risk factor by 78%. The injuries are being treated but the causes

are usually not.

Key factors in reducing the risks are education of staff, residents and families, improving the

environment and nutrition, and increasing exercise. Preventative environmental measures include

clearing spills, use of non-slip floor coverings (no loose rugs), no clutter or other trip hazards, and better

lighting. Other measures include higher chairs, properly adjusted and maintained walking aids,

6-monthly vision checks and review medication regularly (including non-prescription drugs). When falls

occur the person should not be picked up immediately but first calmed, made comfortable and covered,

then checked out for any injuries including concussion. If any injuries are found, medical help must be

obtained. The cause, say dizziness on standing up, should be sought and appropriate remedial action

taken.

Dr Al Power, University of Rochester, USA: ‘Dementia beyond disease: Enhanced well-being’

Dr Power’s theme was that antipsychotic drugs are commonly used even though they have adverse side

effects which may be fatal and do not necessarily improve the condition of the patient. In 2011 29% of

prescriptions dispensed were anti-psychotics. 20% of residents in care homes were taking them of

which one third had dementia, and at best only one in five of them show any improvement. Worse, the

mortality rate is doubled. (“When you’re a hammer everything looks like a nail”, and the antipsychotics

are very big hammers!) However, overuse of psychotics is not a problem in care homes but may be in

the community.

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Research tends to ignore the experience of those with dementia, disempowering them in the process,

but a new model has been inspired by people with dementia such as Ed Vortz and Christine Bryden; Ed

said it was like Miles Davis’ describing improvisation “You play what’s not there”. The new model

assumes that “Dementia is a shift in the way a person experiences the world around him/her.” The

main goal is to create well-being. Aids or ‘ramps’, analogous to the ramps which give the wheelchair

user so much better mobility, are needed so that the person can live as others do. To find the

appropriate ramps demands a change in perspective: take a positive view of ageing, see the whole

person, look through their eyes, facilitate their skills, look beyond their words to the underlying

meaning, and look beyond their behaviour. Finding ways to help is even more challenging because of

the cognitive issues. Spiritual routes, other senses such as touch etc. may be needed. Perhaps the

biggest problem is restoring the person’s autonomy which will need creative solutions arrived at by

negotiation.

APPENDIX E: Dignity Workshops:

‘Dignity in Care – an optional extra?’ - Gillian Moncaster

There were a total of 15 workshops/masterclasses during the conference, in 5 sets of 3 running in

parallel, with subjects ranging widely from’ Re-thinking ageing from loss to gain’, through ‘The impact of

nutrition on the quality of life’ and ’Music and musicking – the brain and the heart of the matter’ to

‘Psychotropic medication’ but this was the only one, indeed the only item in the whole conference,

specifically on dignity in care and the only workshop which set out deliberately to test the perception of

the delegates.

Gillian outlined the purpose of Winston Churchill Travelling Fellowships and the aims of her visit. She

considered the concept of dignity and described work at Manchester City Council, the North West

Dignity Leads Network, the National Dignity Council, and the Care Quality Commission. She high-lighted

the ‘Dignity Daisy’ emblem, and the Dignity Awards and Dignity Champions schemes. She described the

10 Dignity Challenges which were initiated by the UK government and fostered by the National Dignity

Council several years ago. They are intended as a guide to achieving dignity in care and have proved a

powerful tool:-

1. Have zero tolerance to abuse.

2. Support people with the same respect and compassion that you would want for yourself or a

member of your family.

3. Treat each person as an individual by offering a personalised service.

4. Enable people to maintain the maximum possible level of independence, choice and control.

5. Listen and support people to express their needs and wants.

6. Respect people’s right to privacy.

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7. Ensure people are able to complain without fear of retribution.

8. Engage with family members and carers.

9. Assist people to maintain confidence and a positive self-esteem.

10. Act to alleviate people’s loneliness and isolation.

She then divided the audience into 4 groups of 6 or so, each tasked to:

consider one specified aspect of dignity epitomised by specified Challenges,

identify problems,

derive solutions, and

report their findings after 45 minutes.

To achieve good progress in this short time, this part was tightly structured by giving each group (on one

side of A4) 3 scenarios based on real situations relevant to their aspect of dignity and 5 questions. The

groups were asked to work as a group to answer the questions for each scenario. The questions were

the same for each scenario and for each group. Choice of how many scenarios and the order in which

they were discussed was left to the groups. The usual advice was given that it is better to discuss fully

and answer all the questions for one or two scenarios than attempt all three superficially or partly.

Below is an extract from one of these sheets, followed by the answers the group gave:-

GROUP 2 – PERSON-CENTRED CARE

3. Treat each person as individual; 4. Maximise independence, choice and control; 5. Listen and help

people express needs and wants; 9. Assist people to maintain confidence and self-esteem (numbers

taken from the 10 Dignity Challenges)

Please consider the scenarios below. Then, as a Group discuss and answer for each scenario the

questions given at the end. Note: It is better to discuss and answer all the questions for one or two

scenarios than all three superficially or partly. Please choose as a group which scenarios you discuss and

the order in which you discuss them.

Scenario D:

David has early-onset dementia and lives alone in his flat which he shared with his wife until she died

many years ago. He loves talking to people and is an excellent storyteller. He is supported by a home

care service but his district nurse thinks that he now needs residential care, a prospect which alarms

David: he does not want to be ‘put into a home’. He is happy with his present life: his son rings every

day and visits one evening every week with his wife and their three children, the joy of David’s life. He

would like company at mealtimes but his carers don’t have time to chat although they come 3 times

each day. He hates cold food and when his dinner is lukewarm or a sandwich for lunch he throws it into

the garden. This annoys his neighbours because it has created a problem with rats. He also upset the

carers; sometimes he would lash out at them when they woke him in the morning because with his

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failing eyesight he thought they were burglars. He also upset his son by ringing very late at night when

he thought he’d lost money which he always carried in his pocket when the carers had simply put it

away in a drawer for safe-keeping.

Please answer the following questions for each of the above scenarios:

1. Is the dignity and well-being of the person cared for being sustained or preferably nurtured by the

carers? If not, briefly explain how.

2. Who should take action to remedy this?

3. What action should they take?

4. When should they take it?

The group agreed on the following answers:-

1. NO. The 3 visits/day did not allow sufficient time on any one of them to talk or pay much real

attention to David. The care organisation was clearly too task orientated, too regimented and should

re-organise the care to provide a ‘care buddy’ (the same person every day as far as possible) who

would, say, make one longer visit/day to allow some social interaction with David, prepare a meal for

him to heat later (he does have mobility once out of bed), or cook/heat a meal and stay while David ate

or whatever David wanted that day. He should be woken up slowly and gently, telling him who you are.

The care organisation should pay for the journey time and cost, in which case making only one visit

would be a significant saving and it could be a good deal longer than before at no extra cost.

2. The carer and the care manager.

3. The carer should speak to the manager who should review and alter the arrangements in

consultation with David and the carer. The manager should also make sure that the carer is fully aware

of David’s likes and dislikes, wants and needs etc.

4. Immediately.

These answers are very sensible and should solve the main problems. It was interesting that the group

didn’t specifically rule out David going to a care home or to a day centre. Perhaps the former could be

taken as read but the latter should have been considered. Also they should have raised both the matter

of his son ringing late at night and the tidying away of his money.

That group managed to consider all three scenarios (the third only briefly) and arrive at reasonable

answers although missing some of the dignity lapses. The other groups produced similar results

although none had finished all three scenarios. It was reassuring that no group missed the major points

or reached inappropriate conclusions. However, some of the views raised were surprising, alarming or

even very disturbing. Faced with the scenario in which the resident with dementia was upset because

one of her carers insisted that not only should the bathroom door be unlocked but left wide open when

she is using it, one delegate insisted that residents with dementia should be accompanied at all times,

even to the loo! Not only is this obviously impractical, it is indefensible and an affront to dignity.

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APPENDIX F: Training session on Person-centred Care

It was presented by GERATEC in partnership with Residentia and was excellent. The accompanying

manual is an objection lesson in clarity and insight, packed full of interesting and valuable information.

It is particularly helpful in giving both the original versions of risk assessments (intended for clinical use

by qualified and experienced nurses) and user friendly versions where possible. Group discussion

brought out several challenges including the problem of night staff waking residents at 4am to get them

up, washed and dressed before the day staff arrives. Evidently there is work to be done before person-

centred care is fully in place!

APPENDIX G: Dissemination

1. During my visit to South Africa.

Blogs were posted about once a day to

My Facebook page

North West Care Network website

South Africa Care Forum Facebook page

The content was a mixture of business and pleasure; the style informal as befits a blog. Nevertheless

the ones posted on the SA Care Forum page evidently attracted the interest of Care managers: I

received several invitations from managers who had seen the blog and were keen I should visit their

homes.

2. From return to the present date.

Paper presented at the National Dignity Council Conference, 16 October 2014

Press release submitted to WCMT, November 2014, giving names of local papers, professional

journals and websites which may be interested.

Care Talk requested a short article; this was submitted 21 January 2015

Fellowship Report submitted to WCMT January 2015

3. In hand.

Presentation at Lancashire Workforce Forum, 4 February

Poster at WCMT Event, Blenheim, May 2015

4. To come.

When approved, submit Fellowship Report to:

o Websites at WCMT, Manchester City Council, North West Dignity Network, National Dignity

Council, and South Africa Care Forum

o Other UK Regional Care websites

o Other National Care websites

o Rt Hon Paul Burstow MP(personal request)

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o Members of the House of Lords and MPs who express an interest in this topic

o GERATEC (Rayne Stroebel, Margie van Zyl Chapman, Denell Rossouw )

o Andrew Larpent (Southern Cross Care, South Australia and Northern Territories)

o Dr G A Power, University of Rochester, USA

o Alzheimer’s Society South Africa (Denise Fredericks)

o Government departments and other bodies whose remit includes this topic

o Those who request it

When approved, present Fellowship Report to:

o Manchester City Council

Prepare papers for publication/presentation based on various aspects of Fellowship Report

APPENDIX H: Bibliography

Bailey, Gill and Sanderson, Helen ( 2011), ‘Person-Centred Thinking- to support people with

dementia’, ISBN 978 1 906514 65 5 (A booklet particularly useful for training.)

Bowers, Helen, Bailey, Gill, Sanderson, Helen, Esterbrook, Lorna and Macadam, Alison (2007),

‘Practicalities and Possibilities – Person- Centred Thinking with Older People’,

Bryden, Christine (2005), ‘Dancing with Dementia – My story of living positively with dementia’,

ISBN 978 1 84310 332 5

de Villiers, Gwen (2009), ‘Every Day a New Day – A guide for those who care for people with

Alzheimer’s disease’, ISBN 978 07963 1018 7

Email: info@geratecza.com

Eve, Dr (2009), ‘Ageing and Sexuality – Your 21st Century Guide to Lifelong Sensuality’, ISBN 978 1

77020 078 4 (Dr Eve is also known as Marlene Wasserman, an internationally accredited couple and

sex therapist.)

Ferreira, Monica and Lindgren, Pat, ‘Elder Abuse and Neglect in South Africa: A case of

Marginalisation, Disrespect, Exploitation and Violence’,(private communication)

GERATEC and Residentia, ‘FROM MATRON TO MENTOR – The journey to Person-Centred Care’,

training manual used with the GERATEC training course

GERATEC monthly ‘house’ magazine, Insight, www.geratecza.com

Helen Sanderson Associates(2013),‘One-Page Profile Meetings’, ISBN 978 1 906514 92 1

(A booklet particularly useful for training.)

Ketso – Ketso is a hands-on kit for creative group work. It was developed by Dr Joanne Tippett in

Lesotho (Africa) where the kits are made. (Ketso means ‘Action’ in Lesotho) Joanne kindly provided

a kit which I had intended using in the workshop but in the event it wasn’t possible for logistic

reasons. However this is no reflection whatsoever on Ketso; we have been using it since in a series

of workshops on another aspect of care with excellent results, and I am most grateful to Joanne for

making this possible. How to use Ketso, downloaded from www.ketso.com

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Malherbe, Kitty (2007), Older Persons Act: Out with the old and in with the older?, Law Democracy

and Development, 0579 pp53-68, based on a paper delivered at the SLTSA Conference, University of

Cape Town 3-6 July 2006

Rand Aid monthly ‘house’ magazine, Rand Aid Review, www.randaid.co.za,

Email: info@randaid.co.za (Full of interesting news about the homes and villages)

Sanderson, Helen and Bailey, Gill (2014), Personalisation and Dementia – A Guide for Person-

Centred Practice’, ISBN 978 1 84905 379 2, eISBN 978 0 85700 734 6

Sanderson, Helen and Lewis, Jaimee (2012), ‘A Practical Guide to Delivering Personalisation -

Person- Centred Practice in Health and Social Care’, ISBN 978 1 84905 194 1, eISBN 978 0

85700 422 2