Dialogue between the South African Older Persons’ Forum

7.2 Alzheimer’s and Dementia

Alzheimer’s and Dementia, particularly in South Africa, is surrounded by stigma and myth and in some rural communities associated with witchcraft. Many people associate the early symptoms of Alzheimer’s & Dementia as a normal consequence of ageing and therefore do not come forward for help and support. Being aware of and recognizing the symptoms of Dementia is the first step towards receiving a diagnosis. This can help to reduce the anxiety of people with Dementia and their families and allow for education, counselling and support in understanding the progression of this cruel disease.

In 2006, two very powerful reports were published: One report published in The Lancet in December 2005, reported that a new case of dementia arises every seventy seconds and estimates that 24.3 million people currently have dementia with 4.6 million new cases annually. By 2040 the number will have risen to 81.1million.
The study highlights that most people with Dementia live in rapidly developing and heavily populated developing countries: 60% in 2001 and rising to 71% by 2040. The report indicates that there is a great need for community based services, welfare and support for people with dementia and their carers. The figures show that pressure on governments for dementia related services will increase dramatically in the next few years, and that we need to be prepared. There has to be a climate for change in which awareness and education to both policymakers, health care professionals, home based carers and also civil society are encouraged to change their social conscience to include the elderly. The DOH needs to take heed of these reports. They indicate an epidemic and government and specifically the DOH need to be ready to respond.
The challenges experienced by the Asia Pacific Region cited in a report published in September 2006 “DEMENTIA IN THE ASIA PACIFIC REGION: THE EPIDEMIC IS HERE”:

1. 
   Limited awareness of dementia and in many countries a cultural context that denies its existence or attaches stigma to the condition;
   
2. 
   An assumption that dementia is a natural part of ageing and not a result of disease;
   
3. 
   Inadequate human and financial resources to meet care needs and limited policy on dementia care;
   
4. 
   High rates of institutionalisation in cities in some countries and lack of facilities in other regions;
   
5. 
   Inadequate training for professional care givers and a lack of support for family and care givers.
   

These are the very same challenges that we in South Africa face. Considering the above research and reports it is imperative that countries in Africa and specifically South Africa must organise themselves to ensure that health systems are able to cope and provide adequate care to ensure the dignity and quality of life of those living with Alzheimer’s & Dementia, their families and carers.

Research has shown that there are ways to reduce the burden of care:

1. 
   information and education empowers people and communities to understand what is happening to them and their loved one and how to cope better;
   
2. 
   Well-equipped health and social services that understands the effects of ageing in all its contexts;
   
3. 
   Support groups provide an opportunity to share experiences and feelings;
   
4. 
   Counselling has been shown to be effective in improving morale and decreasing feelings of stress;
   
5. 
   Adequate respite care through proper facilities or through structures within communities are essential in order to give a break to carers;
   
6. 
   Practical help in the home through home-based care provided by properly trained carers in dementia care, together with the necessary financial support to sustain this service are vital in the sustainability of care for those with dementia.
   

We urgently need to address the cracks through which our elderly fall when addressing issues of elder abuse in communities and old aged homes, especially those who are dementing and become the victims of financial, sexual, physical and statutory abuse. Alzheimer’s & Dementia is not a health care priority in South Africa. No reference to it is made in the Plan of Action on Ageing. We note that the purpose of the South African Plan of Action on Ageing is “to ensure coordination and integration of services to older persons. It also seeks to clarify roles and responsibilities of different stakeholders in provision of services to older persons. Older persons will be afforded an opportunity to remain independent, active and contributing citizens in the community for as long as possible while receiving quality service.” This is all good and well if the older person retains all their cognitive and mental functioning – what about those who become mentally and cognitively impaired as a result of Alzheimer’s & Dementia or a stroke? What kind of care will be afforded them then?

Much still needs to be done in order to accurately identify the prevalence of Alzheimer’s & Dementia in South Africa and from there determine the action which will be required in order to deal with Dementia.
Summary of Challenges

1. 
   Limited awareness of Alzheimer’s & Dementia and in some cultures it denies its existence or attaches stigma to the condition;
   
2. 
   People with dementia are seen to be possessed by the ancestors, involved with witchcraft and even assumed to be witches- in many cases they are ostracized, abused and sometimes stoned to death;
   
3. 
   An assumption that Alzheimer’s & Dementia is a natural part of ageing and not a result of disease;
   
4. 
   Inadequate human and financial resources to meet care needs and limited policy on Alzheimer’s & Dementia care;
   
5. 
   Rate of institutionalization and the lack of facilities in provinces;
   
6. 
   Inadequate training for professionals including medical health care providers, carers and a lack of counselling and support for family and carers;
   
7. 
   Insufficient political will to provide services to the elderly – the focus is more on health provision for children, the youth and able-bodied adults.
   

Recommendations

7. 
   Upskilling and the inclusion of Alzheimer’s & Dementia training to home based carers which can include identifying the basic hallmarks of Alzheimer’s & Dementia and where to refer for counselling and memory testing;
   
8. 
   Provision of Health & Welfare SETA accredited training which will provide career pathing and meaningful job creation for the many unemployed who show an affinity for working with our vulnerable and marginalized elderly – Dementia SA have partnered with Dementia UK with a view to developing sustainable and focused training on those with Dementia SA considering the new legislative framework of the Older Persons Act 13 (2006). This training will be registered with the H&W SETA by the end of 2011;
   
9. 
   Reliable and accurate data about the prevalence and impact of Alzheimer’s & Dementia in communities is required to better inform decision-making and policy formation to enable appropriate and accessible service development;
   
10. 
    Encouragement of a social conscience around the elderly particularly those with Alzheimer’s & Dementia;
    
11. 
    A cheap, accessible and quick way to curatorship when appropriate. The SA Law Reform Commission was investigating the Enduring Power of Attorney, which is used in many other countries of the world with great success;
    
12. 
    To establish a comprehensive programme for psychogeriatrics;
    
13. 
    To facilitate activities for the training of personnel to manage psychogeriatric disorders in a multi-disciplinary team;
    
14. 
    With respect to medical aids:
    
15. 
    The addition of Dementia with Behavioural and Psychological Symptoms of Dementia (BPSD) to the list of PMB conditions;
    
16. 
    The addition of Alzheimer's Disease and other dementias to the Chronic Disease List – this is where credible epidemiological research will be of value in assessing the need;
    
17. 
    Few medical aids include dementia care. They must be called to the party as well.
    
18. 
    The commissioning of epidemiological research studies with the aim of identifying and understanding Alzheimer’s & Dementia in South Africa as have been done in the UK, Australia, Asia and Europe to accurately determine the extent of our ageing population and those at risk of developing dementia;
    
19. 
    Educational programs aimed at increasing the understanding of Alzheimer’s & Dementia in various communities particularly to dispel myths and cultural understandings through the involvement of traditional healers;
    
20. 
    Programs aimed at increasing the understanding of health care professionals’ re the current state of psycho-geriatrics in South Africa with particular reference to those with Alzheimer’s & Dementia;
    
21. 
    Assistance in compelling medical aid’s to assist with the provision of care (direct and respite care) to families and support organizations who provide services such as counselling, awareness and support;
    
22. 
    Programs aimed at raising the social conscience around ageing and particularly those who are mentally and cognitively impaired;
    
23. 
    Programs aimed at highlighting elder abuse and the growing incidence of elder abuse amongst those who are losing their cognitive abilities as a result of a diagnosis of Alzheimer’s / Dementia
    

8. 
   Assistive devices, dentures, optomEtry, INCONTENENCE MANAGEMENT
   

Population ageing has resulted in a significant increase in the number of people requiring assistive devices. It can be argued that the use of assistive devices makes financial sense for the state as it has the potential to reduce the need for expensive care. Assistive devices advances increased independence and quality of life for older persons and as a consequence the potential to reduce health-related spending.

Although the provision of assistive devices in South Africa was standardized by the DOH, older persons still experience discrimination in the supply of wheelchairs, commodes, bedpans, bath seats, tripods, walking frames, walking sticks and hearing aids.
Optometry

The dignity of older persons must be respected at all times by eye care practitioners; age per se is not a medically relevant factor when determining whether older persons should have the same access to eye care than younger patients. Older persons experience discrimination and marginalization in respect to the state’s provision of glasses, and eye surgery.

Adult incontinence products

The DOH has terminated the provision of certain incontinence products, e.g. adult nappies, in respect of needy older persons. In some of the provinces it was never provided. This currently results in a major added financial and care burden upon Residential Care Facilities. Adult nappies of a good quality have great advantages such as improved hygiene and the prevention of bedsores. Linen savers cannot replace adult nappies in the effective management of this unfortunate condition. We therefore imploringly request the Minister to revisit this issue. It is suggested that such products would become affordable to the State if bought in large quantities, such as only the State would be able to negotiate. Provision of these products is eagerly awaited.

Dentures

For older persons without all or some of their natural teeth in one or both arches, the use of a complete or partial denture and the quality of the denture used are important aspects of their oral, nutritional and general health and social functioning. Teeth are essential requirements of speech and mastication. Having dentures or not, impacts on the emotional, psychological and social wellbeing of an older person. The social stigma attached to toothlessness often impacts negatively on an individual’s self-esteem and human dignity. The provision of dentures should therefore be seen as an integral part of the maintenance of human dignity.

Large numbers of persons requiring dentures are indigent elderly older persons; with virtually no budget at all specifically allocated for the provision of dentures, older persons are, once again, marginalized. The current state of affairs impacts negatively on the emotional, psychological and social wellbeing of many older persons.
Therapies

The referral of older persons to rehabilitation services such as Physiotherapy, Occupational Therapy and Speech Therapy within the State health system is almost non-existent. This matter should be urgently addressed.

Summary of Challenges

1. 
   DOH in certain provinces has terminated the provision of certain incontinence care products, such as adult nappies, in respect of older patients;
   
2. 
   The cost for residential facilities to provide incontinence care products places a major financial burden on facilities;
   
3. 
   In some provinces older patients are supplied with adult nappies on prescription but in others no provision is made for this;
   
4. 
   Older persons experience discrimination and marginalization in respect to the state’s provision of glasses, and eye surgery;
   
5. 
   Referral of older patients to rehabilitation services such as Physiotherapy, Occupational Therapy and Speech Therapy is almost non-existent;
   
6. 
   Large numbers of persons requiring dentures are indigent older persons;
   

Virtually no budget at all specifically allocated for the provision of dentures.
Recommendations

1. 
   Request the DOH to revisit the decision not to provide certain incontinence care products specifically adult nappies, the policy on this also needs to be standardized;
   
2. 
   Non referral of older patients to rehabilitation services should be investigated by the DOH;
   
3. 
   Increased budget for and national strategy for the supply of dentures to indigent older patients;
   
4. 
   Increased budget and national strategy for the provision of the vision related needs of older persons.
   

9. ConclusionS
Inadequate health care infrastructure, resource availability, knowledge and skills, as well as the low priority accorded to older persons’ health, all contribute to the marginalisation of older persons and impact on their quality of life, social inclusion and contribution to mainstream society.
Most importantly, the constraints inhibit the promotion of their physical and mental well-being and health. Older persons’ susceptibility to deterioration in their physical and mental health, as well as the social challenges they face, call for appropriate medical and social intervention. The considerable gaps in the health care system inhibit the provision of quality health care to the older population. A diminishing population of young adults, who are the potential carers for their older relatives, may lead to an increase in demand for institutional care with added costs. Planning to meet this increasing demand for health care, and for community based care in particular, is urgently required.
Primary, secondary and tertiary health care provision for older persons seems to be provided in a non-integrated fashion resulting in serious service delivery gaps in some areas and overlapping and inconsistent access in others. Provision of state health care to older persons is failing them. This is especially true for indigent older persons that have, by comparison, access far less access to comprehensive and quality levels of care. Marginalization of poor older persons hampers their chances in regaining health or improving their quality of life. Of particular significance to the South African context, and government’s commitment to creating a better South Africa for all its people, is that services, and especially health care services, be provided with basic sensitivity and utmost respect for human rights and dignity.
Given the current immense challenges re the provision of health care services to older persons a national strategy should be developed to encompass an integrated, holistic approach to health and disability support services that is responsive to the varied and changing needs of older persons with particular focus on the indigent.
A strategy developed for this purpose should set out a comprehensive, holistic framework for planning, funding and providing health services to older persons. It should also include a programme for the DOH in order to provide a national framework for implementation of the strategy that identifies the action steps for provincial health departments to develop an integrated approach to service provision in their own districts. As part of the proposed strategy it is will also be imperative that the State should carefully consider the threatening scenario where the under-resourced and ill-supported Non-Governmental Organisations in the country may no longer be able to sustain the provision of long term frail care services to older persons given the current spiralling unit cost for the service. It should also be borne in mind that due to the HIV and AIDS pandemic, family support structures are crumbling and not all older persons will have family members to care for them.
In order to effectively manage the proposed national strategy, the establishment of a special Directorate within the National and Provincial Departments of Health that is adequately funded, would be the most effective way of implementation.