How can we ease the burden of dementia?
The disease affects twice as many women as it does men
Nothing made the oft-repeated Women’s Day messaging around preparing for retirement more real for me than my recent frequent visits to a home for the frail. In it the women outnumber men six to one. And the percentage of the women suffering from cognitive impairments that come with Alzheimer’s disease or some other kind of dementia is around 60%.
Already there are 50 million people worldwide living with dementia, which is not a normal part of ageing but a chronic illness that affects memory and the brain’s processing ability, robbing you eventually of the ability to perform basic things like talking, eating, swallowing and walking.
The World Health Organisation expects over the next 12 years that the number will grow to 82 million, and by 2050 some 152 million will be living with dementia.
The estimated global economic impact is an incomprehensible $818bn (about
R11trn) a year.
Dementia is not only a women’s problem, but it does affect women more severely than men as women make up the majority of those living with dementia. Australian and US statistics show that two-thirds of those living with dementia are women.
Breast cancer is a disease many women fear but American women over the age of 60 are twice as likely to develop Alzheimer’s disease, the most prevalent form of dementia, than they are to develop breast cancer, according to BBC Future. Women who are not afflicted often find themselves caring for spouses who are and facing aggression and other behaviour problems, which they are ill-equipped to handle.
At advanced stages of the illness, care becomes intense and costly. If you can afford it, 24-hour home care using carers registered with an agency costs around R30,000 a month before you have spent a cent on food, nappies, medical scheme membership, personal care or clothing.
Frail-care facility rates vary widely depending on who is offering the care and the facilities on offer — less expensive facilities are supported by charities or notfor-profit organisations. Specialised dementia facilities charge anything from R17,000 to R32,000 a month.
Families who cannot afford frail care often turn to a relative to take care of vulnerable family members, but the cost of this is the lost income that the relative could have earned had they been able to work.
In addition, caring for a dementia patient is unbelievably draining. Family members who fail to play a supporting role, both financially and emotionally, only add to the burden of caring.
Discussions around leave for elderly parent care are taking place around the world and even in SA there is a petition before parliament to have the Basic Conditions of Employment Act amended to provide three days’ paid leave or six weeks’ unpaid leave to those who need to care for elderly parents. Dementia cuts across gender and income groups, but the burden is greatest on the caregiver, especially when the older person is ill-prepared.
First on my Women’s Day wishlist is that a cure is found quickly, but failing that, that many more of us take time to consider the financial and practical arrangements that need to be made should you, your spouse, parent or grandparent get dementia.
My second wish is that the designers of a universal health insurance and/or the products that help us finance private healthcare give some thought to just how discriminatory it is to leave families to carry the financial burden.
Medical schemes are little help as they cover neither the cost of medicines typically prescribed to improve memory or calm those who respond to the terrifying loss of the memory of everything that is familiar with anxiety, aggression or depression.
They do not cover the costs of incontinence, and only the higher options pay for nursing or frail care when it is related to a medical condition, but the frailty and cognitive degeneration attributed to ageing is for your own account.
An impairment and dread disease policy may offer some benefits, but in many cases these are not for “whole of life” but end at retirement.
My third wish is that SA introduces an enduring power of attorney to assist family members dealing with the financial affairs of those with dementia. A power of attorney is invalid once the person who granted it no longer has the mental ability to grant it.
A court-appointed curator or administrator is an administrative and financial burden families coping with dementia shouldn’t have to bear.
Average life expectancy for people living with dementia varies between four to eight and eight to 10 years. But averages never speak to your individual circumstances or the difficulties your family may face. Being prepared and having options are your best defence.