Peta-Anne Baker & Sandra Latibeaudiere | Jamaica: not a place for old people
It is indeed unfortunate that Jamaica's Vision 2030 theme makes no mention of Jamaica being the place of choice where persons can retire and enjoy old age. The signs of this being possible for the substantial majority of older persons are very poor.
Up to 2007, some 80 per cent of all Jamaicans did not enjoy universal health care, defined as receiving "the health services they need without risk of financial ruin or impoverishment". Our economic travails over the years would suggest that this situation has not changed.
The 2012 Survey of Living Conditions Ageing Module Report states that while poverty among older persons is lower than for the general population, only about a third of older persons receive a pension of any kind, and almost 50 per cent of this number receive less than J$10,000 per month. Furthermore, while almost half of all households with older persons receive remittances from abroad, only about a third of the poorest of these households receive remittances any at all.
In fact, it is safe to say that many older Jamaicans are too poor to retire, but in our current youth-oriented policy environment, and with a significant percentage of persons having little more than a primary-school education, employment opportunities are limited to largely low-paying occupations.
Jamaica is in denial about the extent of population ageing that is occurring. Our planners, policymakers, and the wider society seem unaware of the fact that the country is already ahead of the curve, with almost 13 per cent of our population being aged 60 and over (that is close to 400,000 people).
It is projected that the number of persons aged 80 and over will increase by almost 60 per cent by 2030 (a mere 14 years from now!). One-third of households in Jamaica contain at least one person 60 years of age or older. In most instances, these persons are active members of the household, often providing care to younger and older members and material support from meagre resources, including for the 23 per cent of persons receiving it, from their PATH benefit.
It should not come as a surprise that a substantial minority of older men (30 per cent) and a slightly smaller (25 per cent) group of older women are not satisfied with their quality of life (although they do have a higher sense of achievement). The levels of dissatisfaction are greater (over 40 per cent) among the poorest members of this population. The fact that levels of dissatisfaction seem to decline with increasing age should offer no comfort as this could represent a spirit of resignation to one's lot rather than active satisfaction.
The release of the World Alzheimer's Report 2016 on September 21 as part of a month of attention to a disease, which is still not completely understood, encourages us to focus on those persons and their families who are struggling with this problem. (The report can be found on the Alzheimer's Disease International website at www.alz.co.uk/research/world-report). To be confronted by the gradual 'disappearance' of a person one has known and loved for many years is an indescribably painful experience for family and friends alike. Providing adequate care can prove to be costly, and support services are few.
Dementia, which is a decline in mental functioning in a manner that impacts one's memory and subsequent ability to perform routine daily tasks, affects a small but growing minority of older persons worldwide and in Jamaica.
Our ability to live longer increases the likelihood that the incidence of dementia, in general, and Alzheimer's, in particular, will increase. Precise numbers of persons with dementia are difficult to obtain. Rates of diagnosis in middle-income countries such as ours run at less than 10 per cent. Currently in Jamaica, dementia data are rolled in to data for mental illness. Many persons living with dementia are likely to be experiencing other chronic conditions such as diabetes or hypertension.
The high-level specialist US group working on this disease states that the objectives of clinical care for persons with dementia (of which Alzheimer's is a type) are: "Preserving, to the maximum possible extent, cognitive and functional abilities, reducing the frequency, severity, and adverse impact of neuropsychiatric and behavioural symptoms, sustaining the best achievable general health, reducing risks to health and safety, and enhancing caregiver well-being, skill, and comfort with managing the patients with dementia in partnership with health-care providers."
Insert into the picture painted above persons suffering from, or trying to provide care for, persons with Alzheimer's - a disease where the main medication can cost $31,000 per month if one is allergic to the standard meds, or is not registered on the National Health Fund (some 50 per cent of older persons are not), or doesn't know the system well enough to ensure that their prescription is written on a government letterhead.
The latter may seem unusual but should be considered in the context of the finding that one-third of those interviewed in 2012 were not National Insurance Scheme contributors because they did not know how to become contributors.
For the family caregiver, the possibility of taking a break from caregiving is available only to those with family or friends willing to take up the responsibility or who can afford to pay for substitute care (if they can get over the feeling of guilt at even acknowledging this need) and can afford the trip abroad or weekend in the country.
The absence of respite care and other adequate supports are themselves contributors to the risk of abuse.
Among the paid caregiving population, despite legislation regarding hours of work and wages, most of these persons, especially those working in the home setting, work 14- 18-hour days and go for weeks without time off. Of course, in both the formal and so-called informal sector, the vast majority of caregivers are women, many of them middle-aged or older.
Little improvement in nursing homes
Most nursing homes no longer smell of urine, but in far too many, little else has changed. Regular activities aimed at achieving an objective such as one of those mentioned above, "preserving, to the maximum possible extent, [the] cognitive and functional abilities" of residents, are rarely in evidence. As in the case of childcare, the television set seems to be the primary source of education and entertainment.
The wider community and public policy assume that caregiving is a family responsibility and is, therefore, not worthy of much public discussion and support. One immediate consequence of this is that families dealing with dementia often find their experience a lonely and debilitating one. When older persons become the recipients of care, they become more and more vulnerable to the loss of their independence, as well as to verbal, emotional, financial, and physical abuse. Unlike the situation of children, there is no public education or advocacy about elder abuse and the environment could be described as hostile to the participation of older persons in decision making.
While progress has been made, the authorities have a great deal more to do in the area of setting and monitoring standards of care in residential facilities for older persons. Our churches and civic organisations could play a substantial role in helping to detect abuse in the home, and the banks and other financial institutions need to equip their staff with the knowledge and skills to detect elder financial abuse.
Jamaica has no legislation that allows persons to set out their wishes for care in the event of their becoming unable to express them. This deficit affects not only persons with dementia, but is complicated in the case of dementia because of its progressive nature. A person may be unable to manage their finances but still be able to decide on where he or she wishes to live.
Despite the talk of participation and individual choice the tendency to equate old age with diminished decision-making capacity often denies this group the enjoyment of their right to self-determination.
Interestingly, a substantial percentage of older persons, 33 per cent of those 80 years of age and over and more than 40 per cent of those 60-79 years, continue to be active in social or civic organisations. However, the highest level of involvement is in the Church and is most likely related to spiritual and socio-emotional needs. Participation in other groups, even those intended for older persons such as senior citizens' groups, does not reach five per cent in all but one instance (5.3 per cent of the highest-income group of older persons are reportedly active in a community organisation).
Sixty-four per cent of persons 60 and over voted in the 2011 election, with the highest turnout being among the poorest. Regrettably, it appears that this group of voters is not yet using its power to engender greater attention by policymakers to its concerns.
It is clear that in addition to significantly expanding its organising effort, the National Council for Senior Citizens needs to include training in advocacy for the groups with which they work. Agencies such as the Social Development Commission, the ODPEM, and the Red Cross need to focus more on the involvement of older persons in their own right and on promoting their ability to speak on their own behalf in relation to policies and programmes to serve older people and support their caregivers.
There is an urgent need for older persons themselves to come together to strategise and demand attention to their concerns. Professionals and other concerned persons have a role to play in speaking to the needs of older persons, but perhaps our greatest task is to find ways to engage older persons themselves, the majority of whom are competent and active, to speak to their own needs and the needs of those among them who are confronting debilitating diseases such as Alzheimer's.
- Dr Peta-Anne Baker is coordinator of the Social Work Programme at the UWI, Mona campus. Sandra Latibeaudiere is a director of Alzheimer's Jamaica, the country affiliate of Alzheimer's Disease International and a member of staff of the SW programme at UWI, Mona. To provide feedback or for further information about Alzheimer's, contact firstname.lastname@example.org.