WEBVTT 00:00.000 --> 00:01.000 align:start position:10% line:84.66% size:5% cc 00:01.000 --> 00:02.100 align:start position:10% line:84.66% size:67.5% >> In addition to being the 00:02.100 --> 00:03.200 align:start position:10% line:84.66% size:77.5% director of the Waisman Center, 00:03.200 --> 00:04.466 align:start position:10% line:84.66% size:70% I have conducted research on 00:04.466 --> 00:06.900 align:start position:10% line:84.66% size:67.5% Down syndrome, and I'm very 00:06.900 --> 00:08.100 align:start position:10% line:84.66% size:70% grateful to the families who 00:08.100 --> 00:09.566 align:start position:10% line:84.66% size:62.5% have participated in this 00:09.566 --> 00:12.866 align:start position:10% line:84.66% size:75% research, and I'm here to tell 00:12.866 --> 00:14.166 align:start position:10% line:84.66% size:65% you a little bit about our 00:14.166 --> 00:18.033 align:start position:10% line:84.66% size:55% latest set of studies. 00:18.033 --> 00:20.133 align:start position:10% line:84.66% size:57.5% Before I launch into my 00:20.133 --> 00:21.966 align:start position:10% line:84.66% size:72.5% presentation on the long-term 00:21.966 --> 00:24.666 align:start position:10% line:84.66% size:80% impact of parents on adults with 00:24.666 --> 00:25.933 align:start position:10% line:84.66% size:60% Down syndrome, I want to 00:25.933 --> 00:27.833 align:start position:10% line:84.66% size:70% recognize the person in this 00:27.833 --> 00:28.966 align:start position:10% line:84.66% size:20% picture. 00:28.966 --> 00:30.666 align:start position:10% line:84.66% size:80% I mentioned that the young child 00:30.666 --> 00:32.266 align:start position:10% line:84.66% size:72.5% with Down syndrome who was in 00:32.266 --> 00:34.733 align:start position:10% line:84.66% size:75% our first pre-school class who 00:34.733 --> 00:36.666 align:start position:10% line:84.66% size:75% testified in front of Congress 00:36.666 --> 00:38.300 align:start position:10% line:84.66% size:65% and comes back to visit us 00:38.300 --> 00:40.333 align:start position:10% line:84.66% size:75% periodically, this is that man 00:40.333 --> 00:42.666 align:start position:10% line:84.66% size:77.5% and his family, and it's always 00:42.666 --> 00:47.166 align:start position:10% line:84.66% size:52.5% wonderful to see him. 00:47.166 --> 00:48.600 align:start position:10% line:84.66% size:70% Why are we interested in the 00:48.600 --> 00:50.800 align:start position:10% line:84.66% size:77.5% long-term impact of families on 00:50.800 --> 00:53.100 align:start position:10% line:84.66% size:65% adults with Down syndrome? 00:53.100 --> 00:55.766 align:start position:10% line:84.66% size:77.5% Some of that has to do with the 00:55.766 --> 00:58.066 align:start position:10% line:84.66% size:75% long-term changes in cognitive 00:58.066 --> 00:59.300 align:start position:10% line:84.66% size:72.5% abilities that are associated 00:59.300 --> 01:02.233 align:start position:10% line:84.66% size:77.5% with Down syndrome, and what we 01:02.233 --> 01:03.766 align:start position:10% line:84.66% size:65% know from research is that 01:03.766 --> 01:05.633 align:start position:10% line:84.66% size:52.5% before the age of 50, 01:05.633 --> 01:07.100 align:start position:10% line:84.66% size:75% individuals with Down syndrome 01:07.100 --> 01:09.300 align:start position:10% line:84.66% size:72.5% actually function better than 01:09.300 --> 01:10.566 align:start position:10% line:84.66% size:77.5% their peers with other types of 01:10.566 --> 01:11.833 align:start position:10% line:84.66% size:72.5% developmental disabilities in 01:11.833 --> 01:12.966 align:start position:10% line:84.66% size:60% terms of their cognitive 01:12.966 --> 01:14.800 align:start position:10% line:84.66% size:72.5% abilities and independence in 01:14.800 --> 01:16.700 align:start position:10% line:84.66% size:80% daily living skills, and there's 01:16.700 --> 01:20.533 align:start position:10% line:84.66% size:77.5% great stability through age 50. 01:20.533 --> 01:22.100 align:start position:10% line:84.66% size:75% After age 50, some adults with 01:22.100 --> 01:23.533 align:start position:10% line:84.66% size:70% Down syndrome encounter some 01:23.533 --> 01:25.000 align:start position:10% line:84.66% size:32.5% difficulties. 01:25.000 --> 01:26.600 align:start position:10% line:84.66% size:75% Some adults with Down syndrome 01:26.600 --> 01:28.300 align:start position:10% line:84.66% size:80% have declines in their cognitive 01:28.300 --> 01:30.033 align:start position:10% line:84.66% size:77.5% abilities or their independence 01:30.033 --> 01:31.866 align:start position:10% line:84.66% size:80% in daily living skills, and some 01:31.866 --> 01:34.566 align:start position:10% line:84.66% size:65% end up with a diagnosis of 01:34.566 --> 01:35.833 align:start position:10% line:84.66% size:77.5% Alzheimer disease because there 01:35.833 --> 01:37.300 align:start position:10% line:84.66% size:57.5% is an increased risk of 01:37.300 --> 01:38.933 align:start position:10% line:84.66% size:80% Alzheimer disease in individuals 01:38.933 --> 01:40.866 align:start position:10% line:84.66% size:77.5% with Down syndrome, and at that 01:40.866 --> 01:43.500 align:start position:10% line:84.66% size:70% point, their health problems 01:43.500 --> 01:45.400 align:start position:10% line:84.66% size:72.5% become more prominent and are 01:45.400 --> 01:46.800 align:start position:10% line:84.66% size:77.5% more pronounced than peers with 01:46.800 --> 01:48.033 align:start position:10% line:84.66% size:70% other types of developmental 01:48.033 --> 01:49.866 align:start position:10% line:84.66% size:32.5% disabilities. 01:49.866 --> 01:51.366 align:start position:10% line:84.66% size:72.5% This is a very important area 01:51.366 --> 01:52.533 align:start position:10% line:84.66% size:65% of research so that we can 01:52.533 --> 01:54.100 align:start position:10% line:84.66% size:70% minimize this effect, and we 01:54.100 --> 01:56.433 align:start position:10% line:84.66% size:75% know that genetics and biology 01:56.433 --> 01:58.233 align:start position:10% line:84.66% size:65% play a large role in these 01:58.233 --> 02:01.300 align:start position:10% line:84.66% size:80% patterns, but we were interested 02:01.300 --> 02:02.766 align:start position:10% line:84.66% size:77.5% in our research to identify the 02:02.766 --> 02:04.533 align:start position:10% line:84.66% size:77.5% additional role that the family 02:04.533 --> 02:06.466 align:start position:10% line:84.66% size:65% can play in optimizing the 02:06.466 --> 02:07.833 align:start position:10% line:84.66% size:55% trajectory of aging in 02:07.833 --> 02:09.533 align:start position:10% line:84.66% size:77.5% individuals with Down syndrome. 02:09.533 --> 02:10.866 align:start position:10% line:84.66% size:77.5% This is going to be a good news 02:10.866 --> 02:13.633 align:start position:10% line:84.66% size:80% story, so I'm smiling as I begin 02:13.633 --> 02:15.466 align:start position:10% line:84.66% size:40% my presentation. 02:15.466 --> 02:17.233 align:start position:10% line:84.66% size:77.5% We know a lot of the impacts of 02:17.233 --> 02:19.366 align:start position:10% line:84.66% size:57.5% families in the general 02:19.366 --> 02:21.100 align:start position:10% line:84.66% size:60% population as well as in 02:21.100 --> 02:22.366 align:start position:10% line:84.66% size:67.5% families with children with 02:22.366 --> 02:23.666 align:start position:10% line:84.66% size:67.5% developmental disabilities. 02:23.666 --> 02:25.266 align:start position:10% line:84.66% size:65% We know that in childhood, 02:25.266 --> 02:26.500 align:start position:10% line:84.66% size:72.5% parent/child interactions can 02:26.500 --> 02:28.966 align:start position:10% line:84.66% size:77.5% foster development in many ways 02:28.966 --> 02:30.266 align:start position:10% line:84.66% size:67.5% and that family cohesion is 02:30.266 --> 02:31.500 align:start position:10% line:84.66% size:42.5% really important. 02:31.500 --> 02:33.400 align:start position:10% line:84.66% size:80% Close parent/child relationships 02:33.400 --> 02:34.766 align:start position:10% line:84.66% size:65% have been shown to lead to 02:34.766 --> 02:36.600 align:start position:10% line:84.66% size:60% growth in communication, 02:36.600 --> 02:37.866 align:start position:10% line:84.66% size:70% independence in daily living 02:37.866 --> 02:40.733 align:start position:10% line:84.66% size:80% skills, social skills, all sorts 02:40.733 --> 02:42.900 align:start position:10% line:84.66% size:67.5% of ways that the family can 02:42.900 --> 02:44.300 align:start position:10% line:84.66% size:72.5% optimize development and does 02:44.300 --> 02:45.433 align:start position:10% line:84.66% size:52.5% optimize development. 02:45.433 --> 02:46.933 align:start position:10% line:84.66% size:67.5% That's all been documented. 02:46.933 --> 02:48.133 align:start position:10% line:84.66% size:70% Even in adulthood, it's been 02:48.133 --> 02:49.633 align:start position:10% line:84.66% size:75% documented that the support of 02:49.633 --> 02:51.666 align:start position:10% line:84.66% size:77.5% family when there's high levels 02:51.666 --> 02:53.066 align:start position:10% line:84.66% size:65% of parental warmth and low 02:53.066 --> 02:54.466 align:start position:10% line:84.66% size:55% levels of criticism is 02:54.466 --> 02:56.433 align:start position:10% line:84.66% size:55% associated with better 02:56.433 --> 02:57.700 align:start position:10% line:84.66% size:55% behavioral outcomes in 02:57.700 --> 02:59.366 align:start position:10% line:84.66% size:75% individuals with developmental 02:59.366 --> 03:00.966 align:start position:10% line:84.66% size:70% disabilities, but no one has 03:00.966 --> 03:02.466 align:start position:10% line:84.66% size:80% really asked this question about 03:02.466 --> 03:04.233 align:start position:10% line:84.66% size:80% the influence of families during 03:04.233 --> 03:05.800 align:start position:10% line:84.66% size:72.5% older age, and that's what we 03:05.800 --> 03:07.733 align:start position:10% line:84.66% size:37.5% began to study. 03:07.733 --> 03:09.666 align:start position:10% line:84.66% size:77.5% We were interested in answering 03:09.666 --> 03:11.966 align:start position:10% line:84.66% size:75% the question, "Does the family 03:11.966 --> 03:14.233 align:start position:10% line:84.66% size:62.5% continue to have a strong 03:14.233 --> 03:16.600 align:start position:10% line:84.66% size:72.5% influence on optimal aging in 03:16.600 --> 03:19.366 align:start position:10% line:84.66% size:80% individuals with Down syndrome?" 03:19.366 --> 03:20.933 align:start position:10% line:84.66% size:67.5% Many years ago, in 1990, we 03:20.933 --> 03:22.366 align:start position:10% line:84.66% size:72.5% began a study of the Aging in 03:22.366 --> 03:23.700 align:start position:10% line:84.66% size:65% Developmental Disabilities 03:23.700 --> 03:25.466 align:start position:10% line:84.66% size:67.5% Family study, and this is a 03:25.466 --> 03:27.300 align:start position:10% line:84.66% size:70% study that was funded by the 03:27.300 --> 03:29.200 align:start position:10% line:84.66% size:75% National Institutes of Health, 03:29.200 --> 03:31.133 align:start position:10% line:84.66% size:77.5% and it was a longitudinal study 03:31.133 --> 03:33.166 align:start position:10% line:84.66% size:57.5% of 461 families and the 03:33.166 --> 03:35.233 align:start position:10% line:84.66% size:75% recruitment criteria were that 03:35.233 --> 03:36.733 align:start position:10% line:84.66% size:75% the mother was age 55 or older 03:36.733 --> 03:38.166 align:start position:10% line:84.66% size:80% and the adult with developmental 03:38.166 --> 03:39.866 align:start position:10% line:84.66% size:77.5% disabilities was living at home 03:39.866 --> 03:41.066 align:start position:10% line:84.66% size:75% with the mother and father, in 03:41.066 --> 03:42.766 align:start position:10% line:84.66% size:27.5% most cases. 03:42.766 --> 03:44.766 align:start position:10% line:84.66% size:67.5% In 169 of the families, the 03:44.766 --> 03:47.133 align:start position:10% line:84.66% size:75% adult son or daughter had Down 03:47.133 --> 03:50.566 align:start position:10% line:84.66% size:22.5% syndrome. 03:50.566 --> 03:52.966 align:start position:10% line:84.66% size:75% Families participated in eight 03:52.966 --> 03:55.100 align:start position:10% line:84.66% size:80% rounds of data collection during 03:55.100 --> 03:56.833 align:start position:10% line:84.66% size:77.5% the 10-year period between 1990 03:56.833 --> 03:58.300 align:start position:10% line:84.66% size:22.5% and 2000. 03:58.300 --> 04:00.766 align:start position:10% line:84.66% size:75% We would visit the family home 04:00.766 --> 04:02.166 align:start position:10% line:84.66% size:60% and interview the family 04:02.166 --> 04:05.466 align:start position:10% line:84.66% size:57.5% members, long, in-depth 04:05.466 --> 04:07.333 align:start position:10% line:84.66% size:77.5% interviews and data collection. 04:07.333 --> 04:08.900 align:start position:10% line:84.66% size:62.5% We always interviewed the 04:08.900 --> 04:09.966 align:start position:10% line:84.66% size:17.5% mother. 04:09.966 --> 04:11.300 align:start position:10% line:84.66% size:80% At various times, we'd interview 04:11.300 --> 04:12.533 align:start position:10% line:84.66% size:72.5% the father and also the adult 04:12.533 --> 04:14.000 align:start position:10% line:84.66% size:80% with developmental disabilities. 04:14.000 --> 04:15.566 align:start position:10% line:84.66% size:75% Then we decided these families 04:15.566 --> 04:16.900 align:start position:10% line:84.66% size:77.5% had given so much of their time 04:16.900 --> 04:18.100 align:start position:10% line:84.66% size:77.5% to us and we should give them a 04:18.100 --> 04:19.300 align:start position:10% line:84.66% size:80% break, but we went back 10 years 04:19.300 --> 04:22.466 align:start position:10% line:84.66% size:75% later, in 2010, to visit again 04:22.466 --> 04:23.700 align:start position:10% line:84.66% size:45% with the families. 04:23.700 --> 04:25.033 align:start position:10% line:84.66% size:72.5% This time we focused on those 04:25.033 --> 04:26.133 align:start position:10% line:84.66% size:75% who had a son or daughter with 04:26.133 --> 04:27.366 align:start position:10% line:84.66% size:35% Down syndrome. 04:27.366 --> 04:29.000 align:start position:10% line:84.66% size:75% That was a 20-year followup of 04:29.000 --> 04:30.566 align:start position:10% line:84.66% size:62.5% the initial point of data 04:30.566 --> 04:32.433 align:start position:10% line:84.66% size:57.5% collection, and we were 04:32.433 --> 04:34.200 align:start position:10% line:84.66% size:77.5% extraordinarily grateful to get 04:34.200 --> 04:35.400 align:start position:10% line:84.66% size:80% a special grant to be able to do 04:35.400 --> 04:37.533 align:start position:10% line:84.66% size:12.5% that. 04:37.533 --> 04:40.066 align:start position:10% line:84.66% size:75% The aims of a 20-year followup 04:40.066 --> 04:42.133 align:start position:10% line:84.66% size:75% were to investigate how family 04:42.133 --> 04:43.900 align:start position:10% line:84.66% size:72.5% characteristics contribute to 04:43.900 --> 04:46.600 align:start position:10% line:84.66% size:80% the optimal aging of adults with 04:46.600 --> 04:47.766 align:start position:10% line:84.66% size:70% Down syndrome over a 20-year 04:47.766 --> 04:49.033 align:start position:10% line:84.66% size:17.5% period. 04:49.033 --> 04:50.300 align:start position:10% line:84.66% size:72.5% By family characteristics, we 04:50.300 --> 04:51.733 align:start position:10% line:84.66% size:62.5% looked at the mothers and 04:51.733 --> 04:54.100 align:start position:10% line:84.66% size:77.5% fathers' positive psychological 04:54.100 --> 04:56.300 align:start position:10% line:84.66% size:72.5% well being, measures of that, 04:56.300 --> 04:58.866 align:start position:10% line:84.66% size:80% measures of depressive symptoms, 04:58.866 --> 05:00.166 align:start position:10% line:84.66% size:67.5% and also the quality of the 05:00.166 --> 05:01.500 align:start position:10% line:84.66% size:75% relationship, the closeness of 05:01.500 --> 05:02.833 align:start position:10% line:84.66% size:70% the relationship between the 05:02.833 --> 05:04.033 align:start position:10% line:84.66% size:67.5% parents, the mother and the 05:04.033 --> 05:05.600 align:start position:10% line:84.66% size:77.5% father, and the adult with Down 05:05.600 --> 05:09.100 align:start position:10% line:84.66% size:22.5% syndrome. 05:09.100 --> 05:10.666 align:start position:10% line:84.66% size:75% Then we looked at outcomes for 05:10.666 --> 05:13.100 align:start position:10% line:84.66% size:67.5% the adults, 20 years later. 05:13.100 --> 05:14.266 align:start position:10% line:84.66% size:62.5% We looked at the level of 05:14.266 --> 05:16.200 align:start position:10% line:84.66% size:80% behavior problems, their ability 05:16.200 --> 05:17.466 align:start position:10% line:84.66% size:72.5% to have independence in daily 05:17.466 --> 05:19.033 align:start position:10% line:84.66% size:80% living skills, their health, and 05:19.033 --> 05:21.600 align:start position:10% line:84.66% size:65% even their dementia phase. 05:21.600 --> 05:23.800 align:start position:10% line:84.66% size:77.5% We were able to follow up 75 of 05:23.800 --> 05:26.100 align:start position:10% line:84.66% size:72.5% the adults with Down syndrome 05:26.100 --> 05:28.000 align:start position:10% line:84.66% size:72.5% and a family member, and this 05:28.000 --> 05:30.366 align:start position:10% line:84.66% size:75% was 80.6% of those adults with 05:30.366 --> 05:32.466 align:start position:10% line:84.66% size:80% Down syndrome who were surviving 05:32.466 --> 05:34.100 align:start position:10% line:84.66% size:80% over that 20-year period and who 05:34.100 --> 05:36.733 align:start position:10% line:84.66% size:67.5% also had a surviving family 05:36.733 --> 05:38.500 align:start position:10% line:84.66% size:77.5% member who could be interviewed 05:38.500 --> 05:41.066 align:start position:10% line:84.66% size:20% in 2010. 05:41.066 --> 05:43.066 align:start position:10% line:84.66% size:77.5% I'll just say a few words about 05:43.066 --> 05:44.233 align:start position:10% line:84.66% size:52.5% why the others didn't 05:44.233 --> 05:45.400 align:start position:10% line:84.66% size:30% participate. 05:45.400 --> 05:46.566 align:start position:10% line:84.66% size:70% Sadly, 57 of the adults with 05:46.566 --> 05:47.933 align:start position:10% line:84.66% size:70% Down syndrome were deceased. 05:47.933 --> 05:49.566 align:start position:10% line:84.66% size:77.5% Four adults who were living had 05:49.566 --> 05:51.766 align:start position:10% line:84.66% size:80% no surviving family members, and 05:51.766 --> 05:53.033 align:start position:10% line:84.66% size:67.5% some families, 18 families, 05:53.033 --> 05:55.300 align:start position:10% line:84.66% size:77.5% declined to participate in this 05:55.300 --> 05:56.866 align:start position:10% line:84.66% size:60% 20-year followup, and 15 05:56.866 --> 05:58.833 align:start position:10% line:84.66% size:75% families could not be located, 05:58.833 --> 06:00.133 align:start position:10% line:84.66% size:75% but we were very happy to have 06:00.133 --> 06:01.566 align:start position:10% line:84.66% size:57.5% 75 families continue to 06:01.566 --> 06:03.233 align:start position:10% line:84.66% size:30% participate. 06:03.233 --> 06:04.566 align:start position:10% line:84.66% size:72.5% Just to say a bit about their 06:04.566 --> 06:07.233 align:start position:10% line:84.66% size:80% ages, in 1990, they were between 06:07.233 --> 06:09.100 align:start position:10% line:84.66% size:70% the ages of 15 and 43, these 06:09.100 --> 06:10.700 align:start position:10% line:84.66% size:65% adults with Down syndrome. 06:10.700 --> 06:12.033 align:start position:10% line:84.66% size:75% Twenty years later, you can do 06:12.033 --> 06:13.666 align:start position:10% line:84.66% size:75% the math, they were between 35 06:13.666 --> 06:17.133 align:start position:10% line:84.66% size:50% and 63 years of age. 06:17.133 --> 06:18.366 align:start position:10% line:84.66% size:75% About two/thirds of the adults 06:18.366 --> 06:20.366 align:start position:10% line:84.66% size:70% with Down syndrome are male. 06:20.366 --> 06:23.000 align:start position:10% line:84.66% size:77.5% About 75% have mild or moderate 06:23.000 --> 06:24.900 align:start position:10% line:84.66% size:75% intellectual disabilities, and 06:24.900 --> 06:26.766 align:start position:10% line:84.66% size:75% we did observe some changes in 06:26.766 --> 06:29.233 align:start position:10% line:84.66% size:72.5% the major outcomes during the 06:29.233 --> 06:30.533 align:start position:10% line:84.66% size:37.5% 20-year period. 06:30.533 --> 06:32.066 align:start position:10% line:84.66% size:75% Just to give you a snapshot of 06:32.066 --> 06:35.633 align:start position:10% line:84.66% size:80% those, in 1990, 4% of the adults 06:35.633 --> 06:38.300 align:start position:10% line:84.66% size:70% with Down syndrome what were 06:38.300 --> 06:39.633 align:start position:10% line:84.66% size:62.5% measured to be moderately 06:39.633 --> 06:41.200 align:start position:10% line:84.66% size:80% serious behavior problems and 8% 06:41.200 --> 06:43.433 align:start position:10% line:84.66% size:70% had marginally serious, less 06:43.433 --> 06:46.566 align:start position:10% line:84.66% size:72.5% serious, and by 2010, none of 06:46.566 --> 06:49.100 align:start position:10% line:84.66% size:62.5% the adults had moderately 06:49.100 --> 06:50.633 align:start position:10% line:84.66% size:57.5% serious and only 4% had 06:50.633 --> 06:52.000 align:start position:10% line:84.66% size:77.5% marginally serious, meaning the 06:52.000 --> 06:53.700 align:start position:10% line:84.66% size:62.5% rest of them did not have 06:53.700 --> 06:55.033 align:start position:10% line:84.66% size:75% significant behavior problems, 06:55.033 --> 06:56.666 align:start position:10% line:84.66% size:55% so that was good news. 06:56.666 --> 06:58.600 align:start position:10% line:84.66% size:70% However, daily living skills 06:58.600 --> 07:00.133 align:start position:10% line:84.66% size:57.5% that we saw declined in 07:00.133 --> 07:01.900 align:start position:10% line:84.66% size:32.5% independence. 07:01.900 --> 07:04.000 align:start position:10% line:84.66% size:75% In 1990, about 52% needed help 07:04.000 --> 07:05.500 align:start position:10% line:84.66% size:80% in performing their daily living 07:05.500 --> 07:06.900 align:start position:10% line:84.66% size:65% skills but 47% were mainly 07:06.900 --> 07:08.366 align:start position:10% line:84.66% size:30% independent. 07:08.366 --> 07:09.566 align:start position:10% line:84.66% size:52.5% That number of mainly 07:09.566 --> 07:13.266 align:start position:10% line:84.66% size:77.5% independent dropped down to 28% 07:13.266 --> 07:15.433 align:start position:10% line:84.66% size:20% in 2010. 07:15.433 --> 07:17.033 align:start position:10% line:84.66% size:70% We also saw a decline in the 07:17.033 --> 07:18.500 align:start position:10% line:84.66% size:75% percentage of adults with Down 07:18.500 --> 07:19.933 align:start position:10% line:84.66% size:75% syndrome who were in excellent 07:19.933 --> 07:22.266 align:start position:10% line:84.66% size:72.5% health, going from 57% to 12% 07:22.266 --> 07:24.866 align:start position:10% line:84.66% size:60% over the 20-year period. 07:24.866 --> 07:26.266 align:start position:10% line:84.66% size:75% This is not that surprising as 07:26.266 --> 07:27.866 align:start position:10% line:84.66% size:70% people move into their later 07:27.866 --> 07:28.933 align:start position:10% line:84.66% size:75% years, people in their 50s and 07:28.933 --> 07:30.766 align:start position:10% line:84.66% size:10% 60s. 07:30.766 --> 07:32.800 align:start position:10% line:84.66% size:75% Sometimes, all of us encounter 07:32.800 --> 07:34.266 align:start position:10% line:84.66% size:75% health problems, and all of us 07:34.266 --> 07:35.800 align:start position:10% line:84.66% size:77.5% may have some more difficulties 07:35.800 --> 07:37.200 align:start position:10% line:84.66% size:80% in terms of daily living skills, 07:37.200 --> 07:40.600 align:start position:10% line:84.66% size:72.5% but this is what we observed. 07:40.600 --> 07:42.133 align:start position:10% line:84.66% size:77.5% Just to give you a sense of the 07:42.133 --> 07:43.800 align:start position:10% line:84.66% size:80% ages of the family participants, 07:43.800 --> 07:46.366 align:start position:10% line:84.66% size:77.5% in 1990, we interviewed 75 moms 07:46.366 --> 07:48.933 align:start position:10% line:84.66% size:75% between the ages of 55 and 83, 07:48.933 --> 07:51.000 align:start position:10% line:84.66% size:77.5% and 50 dads between the ages of 07:51.000 --> 07:52.866 align:start position:10% line:84.66% size:25% 54 and 83. 07:52.866 --> 07:54.266 align:start position:10% line:84.66% size:67.5% Twenty years later, we were 07:54.266 --> 07:55.366 align:start position:10% line:84.66% size:75% still interviewing some of the 07:55.366 --> 07:56.866 align:start position:10% line:84.66% size:50% moms; 34 of the moms 07:56.866 --> 07:58.300 align:start position:10% line:84.66% size:80% participated, and they ranged in 07:58.300 --> 08:00.500 align:start position:10% line:84.66% size:75% age from 76 to 97 years of age 08:00.500 --> 08:02.033 align:start position:10% line:84.66% size:72.5% in that study, and all credit 08:02.033 --> 08:03.466 align:start position:10% line:84.66% size:32.5% goes to them. 08:03.466 --> 08:04.966 align:start position:10% line:84.66% size:77.5% Six dads participated, and they 08:04.966 --> 08:06.533 align:start position:10% line:84.66% size:77.5% were in their 80s, and then for 08:06.533 --> 08:08.700 align:start position:10% line:84.66% size:70% 35 of the families, the main 08:08.700 --> 08:11.200 align:start position:10% line:84.66% size:80% respondent was a sibling, mainly 08:11.200 --> 08:12.800 align:start position:10% line:84.66% size:75% sisters, and they, too, were a 08:12.800 --> 08:15.566 align:start position:10% line:84.66% size:67.5% wide age span from 39 to 74 08:15.566 --> 08:16.833 align:start position:10% line:84.66% size:32.5% years of age. 08:16.833 --> 08:18.066 align:start position:10% line:84.66% size:72.5% This is like a two-generation 08:18.066 --> 08:20.733 align:start position:10% line:84.66% size:30% aging story. 08:20.733 --> 08:22.433 align:start position:10% line:84.66% size:67.5% As I said, we looked to see 08:22.433 --> 08:23.866 align:start position:10% line:84.66% size:62.5% whether parents' positive 08:23.866 --> 08:25.233 align:start position:10% line:84.66% size:62.5% psychological well being, 08:25.233 --> 08:26.566 align:start position:10% line:84.66% size:67.5% depressive symptoms and the 08:26.566 --> 08:27.900 align:start position:10% line:84.66% size:80% quality of the relationship with 08:27.900 --> 08:29.233 align:start position:10% line:84.66% size:77.5% their son or daughter with Down 08:29.233 --> 08:30.900 align:start position:10% line:84.66% size:67.5% syndrome were predictors of 08:30.900 --> 08:32.800 align:start position:10% line:84.66% size:77.5% those outcomes, and we measured 08:32.800 --> 08:34.733 align:start position:10% line:84.66% size:75% those factors in 1990 and then 08:34.733 --> 08:37.666 align:start position:10% line:84.66% size:80% again, every 18 months, 8 times, 08:37.666 --> 08:40.800 align:start position:10% line:84.66% size:65% until 2000, over a 10-year 08:40.800 --> 08:42.300 align:start position:10% line:84.66% size:17.5% period. 08:42.300 --> 08:43.600 align:start position:10% line:84.66% size:60% We looked at whether the 08:43.600 --> 08:45.166 align:start position:10% line:84.66% size:77.5% initial score on these measures 08:45.166 --> 08:46.500 align:start position:10% line:84.66% size:70% of psychological well being, 08:46.500 --> 08:47.800 align:start position:10% line:84.66% size:57.5% depressive symptoms and 08:47.800 --> 08:49.100 align:start position:10% line:84.66% size:62.5% parent/child relationship 08:49.100 --> 08:50.400 align:start position:10% line:84.66% size:77.5% predicted the outcome, and also 08:50.400 --> 08:51.733 align:start position:10% line:84.66% size:67.5% we looked at whether change 08:51.733 --> 08:52.933 align:start position:10% line:84.66% size:80% during that first 10-year period 08:52.933 --> 08:55.966 align:start position:10% line:84.66% size:55% predicted the outcome. 08:55.966 --> 08:57.800 align:start position:10% line:84.66% size:72.5% The outcomes, as I mentioned, 08:57.800 --> 08:59.233 align:start position:10% line:84.66% size:55% are behavior problems, 08:59.233 --> 09:00.633 align:start position:10% line:84.66% size:70% independence in daily living 09:00.633 --> 09:02.100 align:start position:10% line:84.66% size:65% skills, a rating of health 09:02.100 --> 09:04.300 align:start position:10% line:84.66% size:80% status and also dementia status, 09:04.300 --> 09:05.600 align:start position:10% line:84.66% size:60% and you might ask how we 09:05.600 --> 09:06.966 align:start position:10% line:84.66% size:62.5% measured dementia status. 09:06.966 --> 09:08.700 align:start position:10% line:84.66% size:60% We, of course, collected 09:08.700 --> 09:10.166 align:start position:10% line:84.66% size:80% information from medical records 09:10.166 --> 09:12.300 align:start position:10% line:84.66% size:80% if that was available, but there 09:12.300 --> 09:13.700 align:start position:10% line:84.66% size:70% were these two measures that 09:13.700 --> 09:15.200 align:start position:10% line:84.66% size:75% were developed for people with 09:15.200 --> 09:16.633 align:start position:10% line:84.66% size:77.5% developmental disabilities, the 09:16.633 --> 09:17.866 align:start position:10% line:84.66% size:65% dementia questionnaire for 09:17.866 --> 09:19.100 align:start position:10% line:84.66% size:50% people with learning 09:19.100 --> 09:20.500 align:start position:10% line:84.66% size:80% disabilities, a measure that was 09:20.500 --> 09:21.733 align:start position:10% line:84.66% size:80% developed in England, and that's 09:21.733 --> 09:23.000 align:start position:10% line:84.66% size:62.5% the terminology they use, 09:23.000 --> 09:24.366 align:start position:10% line:84.66% size:75% learning disabilities, and the 09:24.366 --> 09:25.600 align:start position:10% line:84.66% size:57.5% dementia scale for Down 09:25.600 --> 09:26.733 align:start position:10% line:84.66% size:72.5% syndrome, which was developed 09:26.733 --> 09:27.933 align:start position:10% line:84.66% size:12.5% here. 09:27.933 --> 09:29.033 align:start position:10% line:84.66% size:77.5% We used both of those, and then 09:29.033 --> 09:30.533 align:start position:10% line:84.66% size:67.5% we went through a procedure 09:30.533 --> 09:31.766 align:start position:10% line:84.66% size:72.5% where clinicians would confer 09:31.766 --> 09:32.966 align:start position:10% line:84.66% size:70% with each other to determine 09:32.966 --> 09:34.066 align:start position:10% line:84.66% size:65% whether the individual was 09:34.066 --> 09:35.700 align:start position:10% line:84.66% size:65% showing signs of cognitive 09:35.700 --> 09:37.066 align:start position:10% line:84.66% size:20% decline. 09:37.066 --> 09:38.466 align:start position:10% line:84.66% size:77.5% This is pretty much the rest of 09:38.466 --> 09:40.000 align:start position:10% line:84.66% size:22.5% my story. 09:40.000 --> 09:41.300 align:start position:10% line:84.66% size:67.5% It's going to be looking at 09:41.300 --> 09:42.500 align:start position:10% line:84.66% size:67.5% slides that look like this. 09:42.500 --> 09:43.800 align:start position:10% line:84.66% size:72.5% Let me show you what it looks 09:43.800 --> 09:45.100 align:start position:10% line:84.66% size:65% like and then show you the 09:45.100 --> 09:46.366 align:start position:10% line:84.66% size:57.5% outcomes that we found. 09:46.366 --> 09:47.500 align:start position:10% line:84.66% size:75% I'm going to show you this for 09:47.500 --> 09:48.600 align:start position:10% line:84.66% size:72.5% mothers and then for fathers, 09:48.600 --> 09:49.733 align:start position:10% line:84.66% size:75% because they're both important 09:49.733 --> 09:50.800 align:start position:10% line:84.66% size:77.5% in our data as well as in every 09:50.800 --> 09:51.800 align:start position:10% line:84.66% size:22.5% day life. 09:51.800 --> 09:53.033 align:start position:10% line:84.66% size:62.5% I'm going to show you how 09:53.033 --> 09:54.466 align:start position:10% line:84.66% size:65% initial levels of mother's 09:54.466 --> 09:56.133 align:start position:10% line:84.66% size:70% psychological well being and 09:56.133 --> 09:57.400 align:start position:10% line:84.66% size:80% change in mother's psychological 09:57.400 --> 09:59.500 align:start position:10% line:84.66% size:60% well being predict these 09:59.500 --> 10:00.966 align:start position:10% line:84.66% size:22.5% outcomes. 10:00.966 --> 10:02.600 align:start position:10% line:84.66% size:70% Similarly, initial levels of 10:02.600 --> 10:04.266 align:start position:10% line:84.66% size:77.5% mother's depressive symptoms in 10:04.266 --> 10:06.033 align:start position:10% line:84.66% size:70% 1990 and changes in mother's 10:06.033 --> 10:07.433 align:start position:10% line:84.66% size:70% depressive symptoms over the 10:07.433 --> 10:09.066 align:start position:10% line:84.66% size:70% 10-year period predict these 10:09.066 --> 10:10.533 align:start position:10% line:84.66% size:77.5% outcomes, and then the same for 10:10.533 --> 10:12.300 align:start position:10% line:84.66% size:77.5% the quality of the relationship 10:12.300 --> 10:13.833 align:start position:10% line:84.66% size:75% between the mom and the son or 10:13.833 --> 10:15.500 align:start position:10% line:84.66% size:77.5% daughter with Down syndrome and 10:15.500 --> 10:17.033 align:start position:10% line:84.66% size:70% change in that relationship. 10:17.033 --> 10:18.733 align:start position:10% line:84.66% size:70% You can see the time line on 10:18.733 --> 10:20.066 align:start position:10% line:84.66% size:60% the bottom of the slide. 10:20.066 --> 10:21.766 align:start position:10% line:84.66% size:67.5% The first point is in 1990. 10:21.766 --> 10:23.466 align:start position:10% line:84.66% size:80% The change score is from 1990 to 10:23.466 --> 10:25.000 align:start position:10% line:84.66% size:77.5% 2000, and then the outcomes are 10:25.000 --> 10:27.233 align:start position:10% line:84.66% size:20% in 2010. 10:27.233 --> 10:28.400 align:start position:10% line:84.66% size:62.5% Let's start with behavior 10:28.400 --> 10:29.733 align:start position:10% line:84.66% size:22.5% problems. 10:29.733 --> 10:31.200 align:start position:10% line:84.66% size:67.5% We got significant positive 10:31.200 --> 10:34.366 align:start position:10% line:84.66% size:72.5% effects of mother's change in 10:34.366 --> 10:35.866 align:start position:10% line:84.66% size:70% level of depressive symptoms 10:35.866 --> 10:37.266 align:start position:10% line:84.66% size:67.5% over the 10-year period, so 10:37.266 --> 10:38.633 align:start position:10% line:84.66% size:70% behavior problems as mothers 10:38.633 --> 10:40.166 align:start position:10% line:84.66% size:75% became less likely to have any 10:40.166 --> 10:42.033 align:start position:10% line:84.66% size:75% depressive symptoms, their son 10:42.033 --> 10:43.466 align:start position:10% line:84.66% size:77.5% or daughter's behavior problems 10:43.466 --> 10:46.366 align:start position:10% line:84.66% size:30% were severe. 10:46.366 --> 10:48.166 align:start position:10% line:84.66% size:67.5% We similarly found positive 10:48.166 --> 10:49.266 align:start position:10% line:84.66% size:72.5% effects of mother's levels of 10:49.266 --> 10:50.666 align:start position:10% line:84.66% size:72.5% depressive symptoms and their 10:50.666 --> 10:51.833 align:start position:10% line:84.66% size:75% son or daughter's daily living 10:51.833 --> 10:53.000 align:start position:10% line:84.66% size:17.5% skills. 10:53.000 --> 10:54.200 align:start position:10% line:84.66% size:72.5% Mothers who had low levels of 10:54.200 --> 10:55.466 align:start position:10% line:84.66% size:70% depressive symptoms to begin 10:55.466 --> 10:57.033 align:start position:10% line:84.66% size:80% with and became even less likely 10:57.033 --> 10:59.100 align:start position:10% line:84.66% size:60% to be having symptoms of 10:59.100 --> 11:00.833 align:start position:10% line:84.66% size:60% depression, their son or 11:00.833 --> 11:02.233 align:start position:10% line:84.66% size:80% daughter had higher independence 11:02.233 --> 11:03.400 align:start position:10% line:84.66% size:77.5% in daily living skills 20 years 11:03.400 --> 11:04.533 align:start position:10% line:84.66% size:15% later. 11:04.533 --> 11:05.733 align:start position:10% line:84.66% size:67.5% These are all statistically 11:05.733 --> 11:09.700 align:start position:10% line:84.66% size:80% significant effects with lots of 11:09.700 --> 11:11.500 align:start position:10% line:84.66% size:47.5% careful controls of 11:11.500 --> 11:13.600 align:start position:10% line:84.66% size:47.5% extraneous factors. 11:13.600 --> 11:16.066 align:start position:10% line:84.66% size:60% We saw several variables 11:16.066 --> 11:17.500 align:start position:10% line:84.66% size:70% contributing to that 20-year 11:17.500 --> 11:19.266 align:start position:10% line:84.66% size:80% outcome in health of adults with 11:19.266 --> 11:20.933 align:start position:10% line:84.66% size:35% Down syndrome. 11:20.933 --> 11:22.333 align:start position:10% line:84.66% size:72.5% Not only depressive symptoms, 11:22.333 --> 11:23.766 align:start position:10% line:84.66% size:80% which come into play again here, 11:23.766 --> 11:25.166 align:start position:10% line:84.66% size:65% lower levels of depressive 11:25.166 --> 11:26.900 align:start position:10% line:84.66% size:70% symptoms, better health, but 11:26.900 --> 11:28.300 align:start position:10% line:84.66% size:65% also the mother's positive 11:28.300 --> 11:30.033 align:start position:10% line:84.66% size:62.5% psychological well being. 11:30.033 --> 11:31.566 align:start position:10% line:84.66% size:75% As positive psychological well 11:31.566 --> 11:33.133 align:start position:10% line:84.66% size:77.5% being improved over the 20-year 11:33.133 --> 11:35.000 align:start position:10% line:84.66% size:77.5% period, the son or daughter was 11:35.000 --> 11:36.933 align:start position:10% line:84.66% size:72.5% much more likely to have good 11:36.933 --> 11:38.300 align:start position:10% line:84.66% size:67.5% health, excellent health 20 11:38.300 --> 11:40.266 align:start position:10% line:84.66% size:30% years later. 11:40.266 --> 11:41.733 align:start position:10% line:84.66% size:60% We saw, in terms of even 11:41.733 --> 11:43.533 align:start position:10% line:84.66% size:62.5% dementia status, mother's 11:43.533 --> 11:45.033 align:start position:10% line:84.66% size:62.5% initial level of positive 11:45.033 --> 11:46.933 align:start position:10% line:84.66% size:70% psychological well being and 11:46.933 --> 11:48.466 align:start position:10% line:84.66% size:62.5% mother's initial level of 11:48.466 --> 11:49.900 align:start position:10% line:84.66% size:62.5% depressive symptoms, when 11:49.900 --> 11:51.100 align:start position:10% line:84.66% size:80% positive well being was high and 11:51.100 --> 11:52.333 align:start position:10% line:84.66% size:72.5% when depressive symptoms were 11:52.333 --> 11:54.300 align:start position:10% line:84.66% size:70% low, the son or daughter was 11:54.300 --> 11:55.900 align:start position:10% line:84.66% size:77.5% less likely to have dementia 20 11:55.900 --> 11:57.366 align:start position:10% line:84.66% size:62.5% years later, and that, we 11:57.366 --> 11:58.866 align:start position:10% line:84.66% size:77.5% thought, was an extraordinarily 11:58.866 --> 12:01.433 align:start position:10% line:84.66% size:55% important observation. 12:01.433 --> 12:02.700 align:start position:10% line:84.66% size:67.5% Now, let's see what happens 12:02.700 --> 12:04.666 align:start position:10% line:84.66% size:32.5% with fathers. 12:04.666 --> 12:05.933 align:start position:10% line:84.66% size:57.5% While father's positive 12:05.933 --> 12:07.866 align:start position:10% line:84.66% size:80% psychological well being and the 12:07.866 --> 12:09.333 align:start position:10% line:84.66% size:72.5% closeness of the relationship 12:09.333 --> 12:10.600 align:start position:10% line:84.66% size:75% between the father and the son 12:10.600 --> 12:11.933 align:start position:10% line:84.66% size:75% or daughter with Down syndrome 12:11.933 --> 12:13.533 align:start position:10% line:84.66% size:75% both contributed the health of 12:13.533 --> 12:15.733 align:start position:10% line:84.66% size:72.5% the son or daughter with Down 12:15.733 --> 12:17.466 align:start position:10% line:84.66% size:67.5% syndrome 20 years later, so 12:17.466 --> 12:19.533 align:start position:10% line:84.66% size:72.5% fathers matter, too, and it's 12:19.533 --> 12:20.933 align:start position:10% line:84.66% size:55% really nice to see the 12:20.933 --> 12:22.300 align:start position:10% line:84.66% size:72.5% relationship quality variable 12:22.300 --> 12:23.466 align:start position:10% line:84.66% size:65% coming into play here with 12:23.466 --> 12:24.866 align:start position:10% line:84.66% size:20% fathers. 12:24.866 --> 12:26.900 align:start position:10% line:84.66% size:52.5% Fathers who had close 12:26.900 --> 12:28.300 align:start position:10% line:84.66% size:77.5% relationships with their son or 12:28.300 --> 12:29.766 align:start position:10% line:84.66% size:75% daughter with Down syndrome in 12:29.766 --> 12:31.866 align:start position:10% line:84.66% size:77.5% 1990 and positive psychological 12:31.866 --> 12:33.633 align:start position:10% line:84.66% size:67.5% well being, 20 years later, 12:33.633 --> 12:34.933 align:start position:10% line:84.66% size:80% their son or daughter had better 12:34.933 --> 12:36.133 align:start position:10% line:84.66% size:17.5% health. 12:36.133 --> 12:37.933 align:start position:10% line:84.66% size:77.5% We also saw that fathers made a 12:37.933 --> 12:39.300 align:start position:10% line:84.66% size:75% positive contribution in terms 12:39.300 --> 12:40.733 align:start position:10% line:84.66% size:47.5% of dementia status. 12:40.733 --> 12:42.000 align:start position:10% line:84.66% size:57.5% Lower levels of initial 12:42.000 --> 12:44.500 align:start position:10% line:84.66% size:75% depressive symptoms and closer 12:44.500 --> 12:46.033 align:start position:10% line:84.66% size:77.5% father/child relationships back 12:46.033 --> 12:47.800 align:start position:10% line:84.66% size:57.5% in 1990 predicted lower 12:47.800 --> 12:50.066 align:start position:10% line:84.66% size:77.5% likelihood of dementia 20 years 12:50.066 --> 12:51.800 align:start position:10% line:84.66% size:75% later, and it's nice to see so 12:51.800 --> 12:55.000 align:start position:10% line:84.66% size:60% many fathers here today. 12:55.000 --> 12:56.200 align:start position:10% line:84.66% size:72.5% That was a lot of data that I 12:56.200 --> 12:57.433 align:start position:10% line:84.66% size:27.5% showed you. 12:57.433 --> 12:58.700 align:start position:10% line:84.66% size:57.5% All of those lines were 12:58.700 --> 13:00.233 align:start position:10% line:84.66% size:72.5% statistically significant, so 13:00.233 --> 13:01.566 align:start position:10% line:84.66% size:65% let me just summarize them 13:01.566 --> 13:02.700 align:start position:10% line:84.66% size:62.5% because I went through it 13:02.700 --> 13:04.100 align:start position:10% line:84.66% size:20% quickly. 13:04.100 --> 13:06.066 align:start position:10% line:84.66% size:72.5% We see that behavior problems 13:06.066 --> 13:08.233 align:start position:10% line:84.66% size:72.5% 20 years later, low levels of 13:08.233 --> 13:09.366 align:start position:10% line:84.66% size:60% behavior problems can be 13:09.366 --> 13:11.466 align:start position:10% line:84.66% size:62.5% predicted by reduction in 13:11.466 --> 13:12.733 align:start position:10% line:84.66% size:70% mother's depressive symptoms 13:12.733 --> 13:14.633 align:start position:10% line:84.66% size:35% over 10 years. 13:14.633 --> 13:16.466 align:start position:10% line:84.66% size:70% Greater independent in daily 13:16.466 --> 13:18.200 align:start position:10% line:84.66% size:80% living skills 20 years later can 13:18.200 --> 13:19.833 align:start position:10% line:84.66% size:72.5% be predicted by initial level 13:19.833 --> 13:21.566 align:start position:10% line:84.66% size:62.5% and reduction in mother's 13:21.566 --> 13:23.000 align:start position:10% line:84.66% size:70% depressive symptoms over the 13:23.000 --> 13:24.500 align:start position:10% line:84.66% size:42.5% initial 10 years. 13:24.500 --> 13:25.800 align:start position:10% line:84.66% size:70% Better health at the 20-year 13:25.800 --> 13:27.766 align:start position:10% line:84.66% size:80% followup can be predicted by the 13:27.766 --> 13:29.800 align:start position:10% line:84.66% size:75% initial level and reduction in 13:29.800 --> 13:31.100 align:start position:10% line:84.66% size:70% mother's depressive symptoms 13:31.100 --> 13:33.033 align:start position:10% line:84.66% size:77.5% over 10 years, and improvements 13:33.033 --> 13:34.400 align:start position:10% line:84.66% size:72.5% in the mother's psychological 13:34.400 --> 13:36.066 align:start position:10% line:84.66% size:75% well being also contributed to 13:36.066 --> 13:37.533 align:start position:10% line:84.66% size:67.5% better health in the son or 13:37.533 --> 13:39.166 align:start position:10% line:84.66% size:70% daughter 20 years later, and 13:39.166 --> 13:41.000 align:start position:10% line:84.66% size:72.5% finally, the initial level of 13:41.000 --> 13:42.400 align:start position:10% line:84.66% size:77.5% the father's psychological well 13:42.400 --> 13:43.733 align:start position:10% line:84.66% size:70% being and the quality of his 13:43.733 --> 13:44.966 align:start position:10% line:84.66% size:70% relationship with his son or 13:44.966 --> 13:46.400 align:start position:10% line:84.66% size:67.5% daughter with Down syndrome 13:46.400 --> 13:48.033 align:start position:10% line:84.66% size:60% predicted better health. 13:48.033 --> 13:49.500 align:start position:10% line:84.66% size:70% Lower likelihood of dementia 13:49.500 --> 13:51.133 align:start position:10% line:84.66% size:75% was predicted by lower initial 13:51.133 --> 13:52.566 align:start position:10% line:84.66% size:77.5% levels of mother's and father's 13:52.566 --> 13:55.033 align:start position:10% line:84.66% size:77.5% depressive symptoms, and higher 13:55.033 --> 13:56.633 align:start position:10% line:84.66% size:65% initial levels of mother's 13:56.633 --> 13:58.366 align:start position:10% line:84.66% size:80% psychological well being and the 13:58.366 --> 14:01.566 align:start position:10% line:84.66% size:75% father's relationship quality. 14:01.566 --> 14:03.233 align:start position:10% line:84.66% size:60% >> Are these statistical 14:03.233 --> 14:04.866 align:start position:10% line:84.66% size:80% correlations an aggregate or did 14:04.866 --> 14:05.866 align:start position:10% line:84.66% size:50% you actually measure 14:05.866 --> 14:07.666 align:start position:10% line:84.66% size:62.5% an individual with better 14:07.666 --> 14:09.066 align:start position:10% line:84.66% size:20% health-- 14:09.066 --> 14:12.066 align:start position:10% line:84.66% size:27.5% [inaudible] 14:12.066 --> 14:13.333 align:start position:10% line:84.66% size:52.5% >> That's a very good 14:13.333 --> 14:15.700 align:start position:10% line:84.66% size:75% question, and we measured each 14:15.700 --> 14:19.266 align:start position:10% line:84.66% size:67.5% person eight times over the 14:19.266 --> 14:20.866 align:start position:10% line:84.66% size:67.5% first 10 years and again 20 14:20.866 --> 14:22.300 align:start position:10% line:84.66% size:77.5% years later, in terms of health 14:22.300 --> 14:24.666 align:start position:10% line:84.66% size:72.5% to use that example you asked 14:24.666 --> 14:26.133 align:start position:10% line:84.66% size:80% about, but these are statistical 14:26.133 --> 14:27.200 align:start position:10% line:84.66% size:80% relationships, but we controlled 14:27.200 --> 14:28.666 align:start position:10% line:84.66% size:65% for their initial level of 14:28.666 --> 14:30.933 align:start position:10% line:84.66% size:57.5% health, so we took into 14:30.933 --> 14:32.166 align:start position:10% line:84.66% size:22.5% account-- 14:32.166 --> 14:33.300 align:start position:10% line:84.66% size:80% I think what you're asking about 14:33.300 --> 14:34.400 align:start position:10% line:84.66% size:67.5% was whether these were just 14:34.400 --> 14:35.433 align:start position:10% line:84.66% size:77.5% healthier people to begin with. 14:35.433 --> 14:37.200 align:start position:10% line:84.66% size:80% We controlled for initial levels 14:37.200 --> 14:38.233 align:start position:10% line:84.66% size:60% >> Again, statistically, 14:38.233 --> 14:39.233 align:start position:10% line:84.66% size:55% aggregate or really an 14:39.233 --> 14:40.666 align:start position:10% line:84.66% size:70% individual cause and effect? 14:40.666 --> 14:42.966 align:start position:10% line:84.66% size:72.5% >> It's not a research design 14:42.966 --> 14:44.533 align:start position:10% line:84.66% size:75% that reveals cause and effect, 14:44.533 --> 14:47.033 align:start position:10% line:84.66% size:80% because you can't experimentally 14:47.033 --> 14:49.000 align:start position:10% line:84.66% size:62.5% analyze this, and it is a 14:49.000 --> 14:50.200 align:start position:10% line:84.66% size:72.5% statistical relationship, but 14:50.200 --> 14:53.166 align:start position:10% line:84.66% size:60% it's based on the direct 14:53.166 --> 14:54.933 align:start position:10% line:84.66% size:80% observations and measurements of 14:54.933 --> 14:57.900 align:start position:10% line:84.66% size:72.5% the individuals in the study. 14:57.900 --> 14:59.266 align:start position:10% line:84.66% size:72.5% We don't talk about cause and 14:59.266 --> 15:00.533 align:start position:10% line:84.66% size:80% effect from this type of natural 15:00.533 --> 15:02.000 align:start position:10% line:84.66% size:80% history data, but we are able to 15:02.000 --> 15:04.433 align:start position:10% line:84.66% size:80% identify these associations that 15:04.433 --> 15:06.266 align:start position:10% line:84.66% size:80% stand the test of time, that are 15:06.266 --> 15:07.700 align:start position:10% line:84.66% size:75% statistically significant, and 15:07.700 --> 15:09.000 align:start position:10% line:84.66% size:67.5% that actually have clinical 15:09.000 --> 15:11.166 align:start position:10% line:84.66% size:77.5% significance if you look at the 15:11.166 --> 15:12.666 align:start position:10% line:84.66% size:72.5% likelihood of being in better 15:12.666 --> 15:14.400 align:start position:10% line:84.66% size:75% health versus poorer health or 15:14.400 --> 15:16.066 align:start position:10% line:84.66% size:70% any of these other outcomes. 15:16.066 --> 15:17.800 align:start position:10% line:84.66% size:47.5% They're very robust 15:17.800 --> 15:20.200 align:start position:10% line:84.66% size:32.5% associations. 15:20.200 --> 15:21.666 align:start position:10% line:84.66% size:65% What we conclude from this 15:21.666 --> 15:24.700 align:start position:10% line:84.66% size:80% study is that the family context 15:24.700 --> 15:26.566 align:start position:10% line:84.66% size:62.5% extends a very strong and 15:26.566 --> 15:28.766 align:start position:10% line:84.66% size:77.5% persistent influence on optimal 15:28.766 --> 15:30.133 align:start position:10% line:84.66% size:62.5% aging in adults with Down 15:30.133 --> 15:32.166 align:start position:10% line:84.66% size:77.5% syndrome over a 20-year period, 15:32.166 --> 15:33.800 align:start position:10% line:84.66% size:77.5% and we see these impacts across 15:33.800 --> 15:35.966 align:start position:10% line:84.66% size:75% a variety of domains, not just 15:35.966 --> 15:37.933 align:start position:10% line:84.66% size:65% health but also behavioral 15:37.933 --> 15:39.800 align:start position:10% line:84.66% size:50% functioning and also 15:39.800 --> 15:42.266 align:start position:10% line:84.66% size:70% independence in daily living 15:42.266 --> 15:46.033 align:start position:10% line:84.66% size:80% skills and even dementia status. 15:46.033 --> 15:48.366 align:start position:10% line:84.66% size:75% I think to wind down, the next 15:48.366 --> 15:50.866 align:start position:10% line:84.66% size:75% steps in our research, we need 15:50.866 --> 15:52.633 align:start position:10% line:84.66% size:77.5% to ask, What's the mechanism by 15:52.633 --> 15:54.633 align:start position:10% line:84.66% size:77.5% which the family has a positive 15:54.633 --> 15:56.266 align:start position:10% line:84.66% size:60% impact on optimal aging? 15:56.266 --> 15:57.833 align:start position:10% line:84.66% size:67.5% These are hypotheses I have 15:57.833 --> 16:00.666 align:start position:10% line:84.66% size:77.5% about how and why this happens. 16:00.666 --> 16:02.166 align:start position:10% line:84.66% size:65% One is that nurturance and 16:02.166 --> 16:04.233 align:start position:10% line:84.66% size:65% positivity in parenting is 16:04.233 --> 16:05.566 align:start position:10% line:84.66% size:70% important, not only in early 16:05.566 --> 16:07.066 align:start position:10% line:84.66% size:77.5% childhood or in adolescence but 16:07.066 --> 16:08.333 align:start position:10% line:84.66% size:77.5% obviously, also across the life 16:08.333 --> 16:09.566 align:start position:10% line:84.66% size:17.5% course. 16:09.566 --> 16:12.200 align:start position:10% line:84.66% size:77.5% I think that when parents who's 16:12.200 --> 16:13.666 align:start position:10% line:84.66% size:77.5% own psychological well being is 16:13.666 --> 16:15.166 align:start position:10% line:84.66% size:72.5% good, when depression is low, 16:15.166 --> 16:16.466 align:start position:10% line:84.66% size:70% parents can be more vigilant 16:16.466 --> 16:17.733 align:start position:10% line:84.66% size:75% about their son nor daughter's 16:17.733 --> 16:20.566 align:start position:10% line:84.66% size:77.5% healthcare and can advocate for 16:20.566 --> 16:22.966 align:start position:10% line:84.66% size:60% serves more effectively. 16:22.966 --> 16:24.866 align:start position:10% line:84.66% size:75% Really, it's not one of these, 16:24.866 --> 16:26.200 align:start position:10% line:84.66% size:72.5% but it's all of the above and 16:26.200 --> 16:28.666 align:start position:10% line:84.66% size:77.5% probably other factors as well. 16:28.666 --> 16:30.200 align:start position:10% line:84.66% size:75% We also need to understand how 16:30.200 --> 16:32.666 align:start position:10% line:84.66% size:75% these results apply to younger 16:32.666 --> 16:36.500 align:start position:10% line:84.66% size:22.5% families. 16:36.500 --> 16:38.400 align:start position:10% line:84.66% size:70% Today's society is much more 16:38.400 --> 16:40.433 align:start position:10% line:84.66% size:75% supportive of individuals with 16:40.433 --> 16:42.000 align:start position:10% line:84.66% size:75% disabilities, and there's much 16:42.000 --> 16:43.300 align:start position:10% line:84.66% size:72.5% greater understanding of Down 16:43.300 --> 16:44.866 align:start position:10% line:84.66% size:72.5% syndrome, and so the families 16:44.866 --> 16:46.333 align:start position:10% line:84.66% size:80% who we're studying in the cohort 16:46.333 --> 16:47.933 align:start position:10% line:84.66% size:75% that I reported on, one of the 16:47.933 --> 16:49.366 align:start position:10% line:84.66% size:72.5% reasons I told you their ages 16:49.366 --> 16:50.566 align:start position:10% line:84.66% size:70% was so that you could locate 16:50.566 --> 16:54.900 align:start position:10% line:84.66% size:57.5% them in time, and every 16:54.900 --> 16:57.100 align:start position:10% line:84.66% size:55% generation has its new 16:57.100 --> 16:58.400 align:start position:10% line:84.66% size:67.5% challenges and also its new 16:58.400 --> 16:59.700 align:start position:10% line:84.66% size:35% opportunities. 16:59.700 --> 17:01.000 align:start position:10% line:84.66% size:67.5% We don't know the extent to 17:01.000 --> 17:02.066 align:start position:10% line:84.66% size:75% which this is exactly the same 17:02.066 --> 17:03.266 align:start position:10% line:84.66% size:15% today. 17:03.266 --> 17:04.566 align:start position:10% line:84.66% size:72.5% It obviously can't be exactly 17:04.566 --> 17:05.733 align:start position:10% line:84.66% size:37.5% the same today. 17:05.733 --> 17:07.066 align:start position:10% line:84.66% size:77.5% We need to replicate this study 17:07.066 --> 17:08.366 align:start position:10% line:84.66% size:55% with younger families. 17:08.366 --> 17:10.033 align:start position:10% line:84.66% size:67.5% In conclusion, we think the 17:10.033 --> 17:11.466 align:start position:10% line:84.66% size:72.5% impact of the family is above 17:11.466 --> 17:12.933 align:start position:10% line:84.66% size:77.5% and beyond the biological aging 17:12.933 --> 17:14.233 align:start position:10% line:84.66% size:77.5% process, which is not to say it 17:14.233 --> 17:17.733 align:start position:10% line:84.66% size:77.5% isn't biological aging process. 17:17.733 --> 17:19.533 align:start position:10% line:84.66% size:70% It is, but the family has an 17:19.533 --> 17:22.133 align:start position:10% line:84.66% size:77.5% effect above and beyond it, and 17:22.133 --> 17:23.866 align:start position:10% line:84.66% size:77.5% we see that the characteristics 17:23.866 --> 17:25.200 align:start position:10% line:84.66% size:65% of the family members have 17:25.200 --> 17:26.566 align:start position:10% line:84.66% size:70% persistent effects, positive 17:26.566 --> 17:27.833 align:start position:10% line:84.66% size:70% effects throughout the adult 17:27.833 --> 17:29.466 align:start position:10% line:84.66% size:75% years, and I think this really 17:29.466 --> 17:31.733 align:start position:10% line:84.66% size:72.5% cries out for family support. 17:31.733 --> 17:32.933 align:start position:10% line:84.66% size:65% When we think about family 17:32.933 --> 17:34.300 align:start position:10% line:84.66% size:67.5% support services, sometimes 17:34.300 --> 17:35.700 align:start position:10% line:84.66% size:60% they're focused on young 17:35.700 --> 17:38.100 align:start position:10% line:84.66% size:80% families, and families of adults 17:38.100 --> 17:39.466 align:start position:10% line:84.66% size:77.5% tend to have lower priority for 17:39.466 --> 17:41.333 align:start position:10% line:84.66% size:60% family support services. 17:41.333 --> 17:42.666 align:start position:10% line:84.66% size:75% One of the important things we 17:42.666 --> 17:44.100 align:start position:10% line:84.66% size:75% need to do here at the Waisman 17:44.100 --> 17:45.933 align:start position:10% line:84.66% size:80% Center is to advocate for family 17:45.933 --> 17:47.333 align:start position:10% line:84.66% size:75% support across the life course 17:47.333 --> 17:49.066 align:start position:10% line:84.66% size:60% because, obviously, when 17:49.066 --> 17:51.066 align:start position:10% line:84.66% size:77.5% families have support, they can 17:51.066 --> 17:52.433 align:start position:10% line:84.66% size:67.5% be more supportive to their 17:52.433 --> 17:54.100 align:start position:10% line:84.66% size:62.5% adult with Down syndrome. 17:54.100 --> 17:55.466 align:start position:10% line:84.66% size:67.5% With that, I'd like to end, 17:55.466 --> 17:57.366 align:start position:10% line:84.66% size:70% acknowledge the families who 17:57.366 --> 17:58.666 align:start position:10% line:84.66% size:72.5% participated in this study so 17:58.666 --> 18:00.400 align:start position:10% line:84.66% size:72.5% incredibly generously over so 18:00.400 --> 18:02.166 align:start position:10% line:84.66% size:72.5% many years and gave hours and 18:02.166 --> 18:03.766 align:start position:10% line:84.66% size:75% hours of their time, opened up 18:03.766 --> 18:05.966 align:start position:10% line:84.66% size:45% their homes to us. 18:05.966 --> 18:08.233 align:start position:10% line:84.66% size:77.5% My colleague, Renee Makuch, who 18:08.233 --> 18:09.566 align:start position:10% line:84.66% size:75% organized the study as well as 18:09.566 --> 18:11.366 align:start position:10% line:84.66% size:77.5% Steven Hartley and Jinkuk Hong. 18:11.366 --> 18:12.966 align:start position:10% line:84.66% size:45% And we had support 18:12.966 --> 18:14.166 align:start position:10% line:84.66% size:77.5% from the National Institutes of 18:14.166 --> 18:15.433 align:start position:10% line:84.66% size:80% Health and the Waisman Center in 18:15.433 --> 18:16.466 align:start position:10% line:84.66% size:60% carrying out this study. 18:16.466 --> 18:18.333 align:start position:10% line:84.66% size:50% Thank you very much. 18:18.333 --> 18:19.833 align:start position:10% line:84.66% size:25% [applause]