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Exploring Quality of Life with Centenarians and SupercentenariansSchool of Social Work and Social Policy, Paper submitted for proceedings of 3rd Australian Conference on Quality of Life, Deakin University, Nov 16, 2001.AbstractCentenarians are increasing exponentially with a doublement rate every 7-10 years. This phenomenon has positive and negative implications for understanding population dynamics as well as health and income security impacts. Previous centenarian research has focused on how people achieve extreme age, looking predominantly at bio-medical antecedents. However, it is also necessary to know the quality of life that centenarians have. Have they ‘aged successfully’ and maintained an advantageous level of social interaction, or are they physically and cognitively disabled? Results from a selected sample of centenarians and supercentenarians (people aged 110 years or more) are presented on Quality-of-Life (QoL). In line with continuity theory and differential ageing perspectives, these data show a generally positive response to QoL, but with some heterogeneity. The data also show that self-rated memory appears to be an important variable in QoL for this group. As this demographic group will increase rapidly in size in coming decades, more research is needed to ensure we are adding life to years rather than just years to life. IntroductionWhen French woman Jeanne Calment died in August 1997 aged 122 years and five months, she had achieved the remarkable feat of extending the human life span. Previously, the maximum life potential (i.e., the verifiable age at death of the longest-lived member of the species) was thought to be biologically limited to 120 years (Moody 1998). This ultimate limit to length of life has itself had a durable longevity until the unique Ms Calment challenged its intractability. Christina Cock, aged 114, is (in January 2002) the oldest person in Australia, the oldest person ever in Australia, and third oldest age-validated person alive in the world. She appears to be a similarly remarkable survivor (see photo), and one of three age-validated living supercentenarians in Australia. There is no doubt that these people have lived to an extraordinary age. In addition to this group of people is another almost equally exceptional group. This is the growing number of people reaching the milestone of 100 years of age. Japan exceeded 10,000 centenarians by the year 2000 (up from 5000 in 1994), Italy had 6000 centenarians in 1993 (up from 1660 in 1990), and one USA estimate is 72,000 plus for early in the new century (Administration on Aging, 1996; Medserve, 1998; Buono, Urciuoli, & De Leo, 1998). In recognition of the importance of this ageing phenomenon, there is an increasing number of centenarian studies underway, looking predominantly at the bio-medical aspects of extreme ageing. Only a couple of studies, such as The Georgia Centenarian Study (Poon, 1992) and The New England Centenarian Study (Perls, Bochenk, Freeman, Alpert & Silver, 1999), have included the psychosocial aspects of survivorship. While it is essential that we understand why so many more people are reaching very old age, we also need to know the quality of their life at this milestone age. Does this demographic transition add life to years or just years to life? In Australia however, very little work has been undertaken on this group (McCormack, 2000). There are many publications on ‘the aged’ (i.e., those aged 65 years or more) but these works often present findings at such a highly aggregated age level that it can be difficult to detect differences within the group. The present exploratory study offers some preliminary descriptive findings on quality-of-life (QoL) for people aged around 100 years and older in Australia. The paper firstly highlights some of the technical difficulties associated with identifying and surveying centenarians per se, and in relation to QoL instruments, and then presents the survey results. The paper concludes with discussion of where and how similar research on this group might progress. How Many Australian Centenarians?It needs to be stated at the outset that there are no exact figures on the number of centenarians in Australia. Apart from age-validation problems, caused by age-exaggeration or age-misreporting, which are important issues in determining the number of true centenarians (Vaupel, 1997; Perls, Bochenk, Freeman, Alpert & Silver, 1999), there are technical reasons for this lack of accurate data. While previous census data did record the exact self-reported single year age of all persons surveyed, the 1996 census did not (ABS, 1996). Rather, age was recorded as ‘99 years or more’ for anyone exceeding that age. Since the census does not record other information that can be transformed to current age, such as date of birth, the starting point in determining the number of Australian ‘centenarians’ for 1996 is the age group 99 years or more. In 1996 there were 2,744 people (2,157 females and 587 males) in that age group. Life Table probabilities (Office of the Government Actuary, 1999) for living an extra year have been applied to those data resulting in an estimate of 1,726 centenarians for 1996 (1,364 females and 362 males), and around 2,500 for year 2000.
Figure 1 Number of Centenarians There were low numbers of centenarians until the 1970s after which the number of centenarians and their growth rate increased substantially (Figure 1). The increase in females is greater than the increase in males, with females representing 79% of persons aged 99 years or more at the 1996 census. From other work (McCormack, 2000), the author has established that around 39% of centenarians live in private dwellings while 61% are in health and retirement related accommodation. The fact that almost four in ten (39%) live in the community with nearly two in ten living alone (17%), hardly depicts these very old people as all being totally frail and dependent. Overall, there is a marked increase in numbers of people aged 100 years plus, and this is set to continue. Study Design and SampleThis study was undertaken in response to the dearth of information on centenarians in Australia, and to this extent is by nature a pilot study. There are other difficulties with such a study in terms of firstly locating the respondents, then gaining access to them. Family members and carers are understandably very protective of such people, and want to avoid any undue pressure. Those who participate may well be the more able from this population and, consequently, the sample is not representative. Initially a mail-out questionnaire was posted to residential facilities. Feedback from staff and families who, along with the author, assisted with interviews, led to a major reduction in the questions asked to take account of physical disabilities such as hearing impairment and ability to sustain questioning. This resulted in six Likert-type single item questions remaining which represent some of the common domains of QoL (i.e. health, memory, social relationships, ability to do things for oneself, overall life satisfaction) and rating the experience of living to 100 years of age. In addition, for exploratory purposes, an aggregated QoL-type score was calculated by summing the scores of the individual items. It should be emphasised however, that in this simple form, the individual items provide a fairly superficial understanding of the person’s experience. The sample to date consists of 35 respondents (Figure 2). Figure 2 Age Distribution of sampled Centenarians Theoretical perspectives and defining centenarian QoLWhile the socio-demographic data above illustrate some social diversity among centenarians, it is unlikely that anyone reaches this age without any health problems. People have reached this age because they haven’t died. That is, they have avoided or delayed the serious onset of the major fatal diseases such as cancer and diseases of the circulatory system. However, all the centenarians interviewed here reported some health problems ranging from chronic arthritis and diabetes to constipation. More than 80% were taking some medication, although the number of hospitalisations in the last twelve months was very low. Thus, we might expect that centenarians would report low QoL due to this physical deterioration. As well, by the fact of their longevity, centenarians have experienced considerable loss over their lives. This can extend to partners, friends and even their own children. Given this, again, one might expect that centenarians would report low QoL as their social relationships may have decreased considerably. Further, according to Cumming and Henry’s (1961) disengagement theory, with increasing age centenarians would have gradually withdrawn from life and therefore again we might expect low QoL. Continuity theory (Neugarten, 1969), on the other hand, predicts that people's attitudes to life and their behaviours tend to remain stable over time. Thus, there is no reason to expect a sudden change at 100 years of age. Differential ageing (Birren & Bengston, 1988) is another perspective informing us that, as with other age groups in society, there may be considerable differences among individuals within this age group, and therefore we might expect some variation across individuals, although for QoL ratings, this will be within a limited range (Maher & Cummins, 2001). Overall then we have a mixed bag of expectations to investigate. However, while these theoretical perspectives provide some guidance for what we might observe in relation to QoL, they do not present us with a clear definition of QoL for this group. For example, while more than half of those aged 100 to 102 years were mobile and alert, around a quarter of centenarians in the sample were quite physically disabled (bed-bound) and dependent, and not oriented to time or place, although not exhibiting severe dementia. How does one assess QoL for people in this state? They did respond to physical touch, had good appetites, often sang, generally looked content, and did not appear to be uncomfortable or in pain. These people obviously scored low on ability to do things for themselves and might be considered to have low QoL by external standards. By their own, or family members' standards however, they could be considered relatively happy and having a high QoL. Thus, who decides what QoL is, and what the rating should be, is an area needing more research with this group (Baltes, 1996). For present purposes, as stated above, the definition of QoL relates to the individual’s perception of their current physical health, memory, social relationships, ability to do things for themselves, and so on. This is not unlike Rowe and Kahn’s (1987) classic definition of ‘successful ageing’ to the extent that they define it as maintaining physical and cognitive functioning and engagement with life. However, more detailed investigation, particularly on disability at very old age, needs to occur lest people automatically equate successful ageing or QoL with longevity. Results and DiscussionBasic descriptive scores for the QoL-type variables are presented in Table 1. All mean scores are expressed using the percentage of scale maximum (written here as %MS) methodology (Maher & Cummins, 2001).
This approach, when applied to large population surveys, predicts mean subjective QoL to lie within the range 70-80 %MS (Maher & Cummins, 2001). The mean scores in Table 1 approach this level on several of the items (e.g., Life Satisfaction) but are considerably below it on the other items (e.g., Self-Ability), and the standard deviations are large. The small non-representative sample of a fairly marginal and unexplored group may account for some of this normative gap. It could also be that this group, due to their longevity, experiences lower QoL. Alternatively, there may be limitations to the way QoL has been operationalized in the present investigation. Looking at more specific domains of QoL, it can be seen that self-rated health has a considerable spread of responses, possibly highlighting the individual variation present in the sample. Figure 3 Health rating of Centenarians While the modal response is the category "Very Good", about one third (32.3%) rate their health as "Poor" or "Fair", and less than 10% rate it as "Excellent". Thus the mean %MS of 52.9 is low by general population standards. As stated above however, it would be surprising if individuals survived to this age without some health problems. This decline in physical health may also be seen in the item ‘ability to do things for oneself’. Figure 4 Centenarian’s rating of ability to do things for themselves More than 40% rated themselves "Fair/Poor" on this item, and the %MS at 39.7 was the lowest score for any item. About 60% of centenarians live in nursing homes or cared accommodation (McCormack, 2000), and this may well explain the score here as entry to those institutions is based on the need for assistance with activities of daily living. In contrast to the somewhat negative response on the above two items, when asked to rate overall life satisfaction, the %MS is much higher at 69.7, and closer to the population norm. Figure 5 Centenarian’s self-rated Life Satisfaction Only 6% were "Not Satisfied" with life, 48% were “Satisfied”, and nearly half were "Very Satisfied". Thus, despite physical limitations, centenarians may still have a positive view on life. It is, after all quite an achievement to live to this age, and the personality characteristics, coping skills and adaptiveness developed over this long life may support a positive disposition to life. This is further exemplified with respondents’ rating on what it is like to live to 100 years of age.
Figure 6 Centenarian’s rating on Living to 100 years Only 10% of the sample thought it was "Not Good" to live to 100 years, while almost two-thirds thought it is "Good" or "Very Good". From interviews, there was a small group who clearly had ‘had enough’. For example, two respondents said they prayed each night that God would ‘take me’, only to find they awake next morning. Thus, surviving to extreme age is more complex than just having a will to live. This leads on to what emerged as the most significant item in these QoL domains, that of memory. As can be observed, the distribution of self-rated responses was bi-modal around either "Fair" or "Very Good".
Figure 7 Centenarian’s self-rated memory The %MS score for memory was the second lowest scoring item at just 50.8. A substantial 42.4% rated their memory as "Poor" or "Fair". On the other hand, 30% rated their memory as "Very Good", and 12% as "Excellent". This latter finding is quite interesting because it emphasizes the now clear position that not everybody who lives to very old age will contract dementia or similar symptoms. However, the finding here may be over-stated because some respondents commented in addition to the rating that their long-term memory was excellent. This could mean that their short-term memory is deficient, and that they in fact may be experiencing some degree of memory loss. Further specification of long- and short-term memory in the questionnaire is required for future sampling. When looking for associations between the items, memory stood out as the only item with significant correlations with most other variables, as shown below.
Age was found to be negatively correlated with memory (r = -.11), which accords with prevalence studies showing that the risk of dementia increases with age. However, memory was significantly associated with all others items except Life Satisfaction. It seems the perception that self-memory is good is associated with the perception that one’s health, social relationships, ability to do things, and how one feels about living to 100 years of age are more likely to be positively rated. If one can’t remember their life, or does not know how old they are now, then this difficulty in rating could carry across to other QoL domains. On the other hand, in a non-agitated mood, people with memory loss can appear quite content. This may be part of the explanation as to why overall life satisfaction has little relationship with memory. ConclusionThis exploratory research has investigated the important QoL concept in a small sample of highly selected centenarian respondents. As expected, the study found that overall self-rated health ranged from fair to good. Low scoring on ability to do things for oneself accords with the health problems most experience at this extreme age. Social relations were reported as being good and living to 100 years was generally seen as positive. However, memory was found to vary considerably among this group and seems to interact with most other dimensions of QoL. As predicted by the differential ageing perspective, it seems there are different sub-groups among the centenarians whose health status and so on varies – good for some, not for others. The sample group as a whole appeared to score lower on most QoL domains than the general population. However, inconsistent with disengagement theory, the data suggest that for most centenarians whose memory is intact, QoL is fairly good. These people are after all remarkable survivors. This demographic group is projected to increase rapidly in size in all industrialised societies and it is important that we have a better understanding of the individuals' QoL at this age. Such an understanding will have important implications for the development of appropriate health and social interventions at this and earlier ages. Further development of how to measure QoL with this group is required, especially for those with poor memory. Acknowledgements: The author would like to thank all those people aged 100 years or more who participated in this study, and the organisations which have supported the study. Special thanks to Julie Johinke of Resthaven Homes, SA. ReferencesAdministration on Aging, (1996). Estimates and Projections of the Older Population 1990-2050 HTTP://WWW.AOA.DHHS. Australian Bureau of Statistics (ABS) (1996). Social and Housing Characteristics, Australia Census, Cat No 2015.0, Canberra, 1911 to 1996. Baltes, M, (1996). The Many Faces of Dependency in Old Age, Cambridge University Press. Birren, J & Bengston, V, (1988). Emergent Theories of Ageing, NY, Springer. Buono M D, Urciuoli O, De Leo D, (1998). Quality of Life and Longevity: A Study of Centenarians, Age and Ageing, 27; 207-216. Cumming, E & Henry, W, (1961). Growing old: The process of disengagement, NY, Basic Books. Maher, E & Cummins, R, (2001). Australasian Journal on Ageing, Vol 20, No.3, pp139-146. McCormack, J (2000). Hitting a Century: Centenarians in Australia, Australasian Journal on Ageing, Vol 19, No 2, pp 64-69. Medserve (1998). Medical News HTTP://WWW.MEDSERV.DK September 9. Moody H, (1998). Aging: Concepts and Controversies Sage, California. Neugarten, B, (1969). Continuities and Discontinuities of psychological issues in adult life Human Development, 12, 121-130. Office of the Government Actuary, (1999). Australian Life Tables, AGPS 1991 & 1995-1997. Perls T, Bochenk K, Freeman M, Alpert L, Silver MH, (1999). Validity of Reported Age and Centenarian Prevalence in New England, Age and Ageing, Vol 28 No 2 pp 193-197. Poon, L (Ed), (1992). The Georgia Centenarian Study, The International Journal of Aging and Human Development Special Issue, Vol 34 pp 1-17. Rowe, J & Kahn, (1987). R, Human Aging: Usual and Successful, Science, 237, pp 143-149. Vaupel J, (1997). Demographic Analysis of Aging and Longevity, Proceedings of 23rd IUSSP General Population Conference Beijing, China.
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