As population dynamics change, diagnostic techniques improve and public awareness grows, the number of dementia cases being reported – and treated – is increasing.
Given the high cost of dementia care, we wondered if dementia patients are receiving adequate cover from their medical aid schemes. Dementia is a condition rather than a disease, and presents as a group of symptoms that affect thinking and socialising. This includes memory loss, disorientation, confusion, difficulty with problem solving, difficulty reasoning, and difficulty with coordination. Psychological changes include anxiety, depression, personality changes, hallucination, and paranoia. Each of these symptoms presents with different intensity in different people at different stages of the condition, and some may not appear at all. Because of the complexity of the condition, diagnosis can be tricky, and can take years in some cases, and a definitive diagnosis can be done only by a psychiatrist and/or neurologist.
Jill Robson of Alzheimer’s South Africa explains: ‘People with dementia don’t always know they’ve got dementia; they’re not walking around thinking: “Oh I’ve got dementia, that’s why I’m not remembering what day of the week it is.” Family members sometimes don’t realise there’s a problem because dementia people can appear perfectly lucid for a short while. Or they will remember something clearly from 50 years ago, but they won’t remember they’ve just had lunch. Or the kids didn’t have a clue because Mum covered up for Dad, and they only found out when Mum passed away. Sometimes the neighbours pick up there’s a problem because they’re not locking the doors, or they’re walking around in their nightie.’
Some diseases, like Alzheimer’s, Parkinson’s, trauma to the head, and strokes, can be clear causes of progressive dementia. Others, such as Addison’s, heart problems, uncontrolled diabetes, and hypothyroidism, can lead to dementia in some people. Then there are others, such as depression, lupus and epilepsy, that are associated with a markedly higher risk of dementia, but the causal relationship is unclear. Finally, there are some that may cause dementia-like symptoms, such as some infections and substance abuse, including alcoholism.
Dementia can affect people of all degrees of health and wealth. It is thought of as a condition of the elderly because it mainly affects people over the age of 65, but a small number of younger people are also affected.
Dementia patients need special care
Robson manages the Western Cape office of Alzheimer’s South Africa, which has offices in each province, and provides support for families dealing with dementia. She says that diagnosis helps families understand how to treat dementia patients: ‘It makes life easier if the family knows why they don’t know where the toilet is now, or they think they haven’t eaten in two days.’
Dementia gets progressively worse so, after diagnosis, she says, the family must carefully plan a progressive treatment regime. ‘The end of that process,’ Robson adds, ‘is full-time care.’
Dementia patients have different needs from frail care patients, and can also create some discomfort for other patients. They therefore need dedicated dementia healthcare. Full-time care is costly, with one upmarket facility, for example, charging monthly levies of about R45,000, in addition to a non- refundable life right fee. Full-time home-based care can be even more expensive, with at least two live-in carers required.
How medical aid works
Many people think medical aid is the same as insurance, but that is true in only the most superficial way. Both involve monthly payments for a level of cover for when things go wrong, but that is where the similarity ends.
Insurance involves paying a risk-based premium to an insurance company, which is a profit-making enterprise. The insurance company decides the cost of the premium based on the client’s risk factors, including such things as age, lifestyle, pre-existing medical conditions, and even hazardous hobbies or occupations.
Medical aids, on the other hand, are non-profit schemes in which the members pay the same contribution regardless of their lifestyle, age, occupation or pre-existing conditions. The exception to this is that people who start contributing to medical aid only after the age of 35 pay a pro rata late joiners penalty. This is because medical aids are based on the concept of cross-subsidisation in which the younger members, who are usually healthier, subsidise the older members, who usually need more medical care. In turn, when they age, they are subsidised by a new group of younger members.
Financial broker Ivor Jones explains that keeping a medical aid scheme liquid is a delicate balancing act, because they can’t spend more than the members’ contributions. So, they may have to limit what they can cover in order to not overspend.
What medical aid schemes provide
Each medical aid scheme offers different benefits or health services to its members, and it is notoriously difficult to wade through the details, sub-clauses, exceptions, exclusions, and special conditions. However, there are some services that they are required by law to provide, under the Medical Schemes Act 131 of 1998. These are referred to as prescribed minimum benefits (PMB) and include all emergency conditions, 270 specified medical conditions (called diagnosis treatment pairs), and 25 chronic conditions. The Act provides an indication of how each condition should be covered, based on proven practice and affordability.
‘Treatable dementia’ is a PMB, and the schemes are required to cover admission for initial diagnosis and management of acute psychotic symptoms for one week, but the majority of dementia cases are irreversible, and will not respond to treatment within a week. This is a murky area, and vagueness of terms is more often interpreted in favour of the scheme, not the member.
For the listed chronic conditions, schemes are required to cover medication, doctor’s consultations, and tests, according to the Council for Medical Schemes. The only disease listed that has an obvious link to dementia is Parkinson’s. Alzheimer’s disease, which is the most well known cause of progressive dementia, is not listed.
Some medical schemes cover medication for Parkinson’s and Huntington’s diseases under its chronic illness benefit, but they don’t cover frail care, full-time nursing, or any care that does not require a trained medical person.
The Act does provide for palliative care, which is the management of terminal conditions such as cancer, with schemes required to cover ‘comfort care, pain relief and hydration’. Some schemes also cover psychosocial support and nursing care but there is a limit on the amount it will pay out. More to the point, as dementia is not a terminal disease, it is not covered under palliative care.
Jones says that he is not aware of any scheme that will cover day-to-day nursing or frail care, but he points out that there are some benefits that medical aids provide that people may not be taking full advantage of. He explains: ‘If you are on a hospital plan, all your out-of-hospital costs will be paid out of pocket. With a comprehensive plan with above-the-threshold benefits, there is no limit on your doctor’s consultations, for example when you need to see a neurologist for Alzheimer’s treatment. Your medication will also be covered, although there can be a limit on that. You have to ask if you’re on the correct plan with your medical aid.’
Medical aid schemes are not required by law to provide all the care that dementia patients need, and in the course of researching this article we did not find a medical aid scheme that covers dementia care or frail care adequately. Both are very expensive, and it is therefore necessary to consider alternative options for financial support, such as unit trusts or annuities.