Tough road for families living with dementia

The cost of care for the elderly can become prohibitive in the case of people with dementia or other diseases that leave them unable to manage the basic functions of day-to-day living, writes Laura du Preez.

Increasing longevity means people are enjoying longer lives, but it has also led to an alarming increase in the prevalence of illnesses, such as dementia and Alzheimer’s disease, that require long-term care.

More and more families are having to pay for facilities such as frail care, or for hiring help at home, or are losing the income of a family member who stays at home to care for an elderly relative.

The number of people living with dementia worldwide was estimated at 47.47 million in 2015, and it is expected to reach 75.63 million in 2030 and 135.46 million in 2050, according to the World Health Organisation. Alzheimer’s SA regional director Jill Robson estimates some 850 000 South Africans have dementia or Alzheimer’s.

If a member of your family has one of these illnesses, or one of a host of others that leave older people unable to care for themselves, you will need to provide full-time care over what may be a long period.

This is what is referred to in the United States as long-term care. The US health department estimates that 70 percent of people reaching age 65 can expect to have some form of longterm care during their lives.

DementiaSA’s website says statistics show that dementia affects one in 20 people over the age of 65 and one in five people over the age of 80.

Robson says frail-care facilities vary from R2 000 a month to R45 000 a month, depending on whether or not they are subsidised. Retirement villages’ frail care typically costs between R17 000 and R25 000 a month, she says. Waiting lists can also be a problem if you need care urgently.

Some retirement villages are now also insisting that frail-care residents with a condition such as dementia or Alzheimer’s that requires 24-hour oneon-one care must pay for additional carers on top of the frail-care fees.

Hiring a carer to assist in frail care or at home is not cheap either. A Cape Town agency that provides trained carers, Cape Care Agency, says you will need to hire four carers to provide care 24 hours a day, seven days a week and the cost will be between R25 000 and R30 000 a month.

If, in addition, you require a nursing sister to, for example, oversee tube feeding at the later stages of an illness, your costs will be higher.

Adult nappies and medication are additional expenses. Medication for Alzheimer’s or dementia can easily cost R1 000 a month, with much of it not covered by medical schemes other than from a member’s medical savings account.

Dementia and Alzheimer’s are not covered by the prescribed minimum benefits (PMBs) for medical schemes and schemes typically do not cover the prescribed medication. However, other illnesses requiring long-term care, such as Parkinson’s disease, are covered by the PMBs.

Most medical schemes, barring a few restricted schemes such as Bankmed, do not pay the costs of frail care when you need this care because of frailty that comes with old age or mental incapacity. They typically pay for frail-care services only when you are recovering from an operation or illness or when you need palliative (pain relief and comfort) care when your illness is terminal.

Kate Brown, a financial planner at Fiscal Private Client Services, says it is important for carers to look after themselves and ensure they are always cheerful. When family members are doing the caring, they need to take good breaks from their duties, and if there is no family or friend to do this, the carer’s family should pay for relief care, which is, of course, an additional cost.

September is Alzheimer’s and Dementia Awareness Month, and Wednesday is World Alzheimer’s Day.