1	Aging With A Spinal Cord Injury: What The Professional And The Consumer Need To Know Presented at the AASCIPSW & AASCIN Annual Conference September 9, 2004 – Las Vegas Bryan Kemp, Ph.D. Rodney Adkins, Ph.D. Lilli Thompson, P.T.
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3	The information in this presentation has been condensed to make it easier to understand without the benefit of the lectures that went with. A full recording can be obtained by contacting the Spinal Cord Injury Nurse’s Association.
4	Aging with a spinal cord injury is one of the most important topics in rehabilitation today. This presentation is about what happens to people with a spinal cord injury as they age. It describes many of the medical, functional and psychosocial issues these people face. The most significant changes begin to occur about 20 years after the onset of the SCI, or around the age of 50.
5	First, to set the stage for what is occurring to people with SCI, let’s look at how life expectancy has changed for people with SCI over the last 50 years.
6	Since 1940, life expectancy for a 25 year-old person with a Spinal Cord Injury has increased 2000% and is now about 85% of normal
7	In other words, people with SCI are living into middle and late life in ever increasing numbers.
8	However, We Are Not Seeing What We Originally Expected As These People Age. We Expected People To Maintain Health and Functioning Better, But It Hasn’t Turned Out That Way
9	Many People Experience Changes In Mid-life
10	"People with SCI are living..." People with SCI are living longer. Around age 45-50 or 20 years post-onset, most people with SCI experience changes in health and functioning. What is causing this? Are these changes due to atypical aging? If yes, why? If not, what are they due to? What are the consequences of these changes and what should be done?
11	Researchers Are Investigating Many Possible Causes Of The Changes In Health and Function
12	Why Are People With SCI Aging Faster? Possible Explanations Premature aging (Age of the person) Duration of the SCI (Age of the SCI) Age at onset (The age in development) 3. Era of the disability (Age In History) 4. Increased susceptibility to secondary health conditions
13	Different Factors May Be The Cause Of Different Outcomes For example, increased duration is related to better adjustment, but not current age is not.
14	The Importance Of Separating Age From Duration While correlated, they can be separated. For the most part, duration (the age of the SCI) seems to be more important than the age of the person.
15	The Era or Cohort Effect Is Also Important Because People Were Treated Different Then And It May Relate To Their Aging Today Medical Technology Rehabilitation practice Social Attitudes Expectations Laws
16	Study Designs We have to separate age and duration, so we have to look at things both longitudinally (the same people over time) and cross-sectionally (different ages at the same time).
17	Next, Let’s Ask “What Is Aging?” Aging Is Different Things At Different Levels At the cellular level (cell death) At the organ level (health) At the functional level (ability) At the psychological level (adaptability) At the social level (role success)
18	One of the most important ways to understand aging is at the organ system level. Here, we know the rate of aging, which is about 1% per year.
19	The next slide shows how we develop our functioning in organs and how we age. Note that aging normally begins about age 20-22! As we age, we lose about 1% per year in our physical functioning. Also note that we develop excess, or reserve, capacity in each organ system.
20	Organ System Aging: A Critical Factor
21	However, people who have a disability appear to be aging at a slightly faster rate.
22	At some age, everyone reaches a point where they have only about 40% of their capacity remaining. At that point, they are in jeopardy of developing new health problems.
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24	Medical Aspects of Aging With SCI
25	The Effect of Secondary Conditions On How We Age
26	Many health problems other than the SCI itself occur at an earlier age or in greater frequency among people who have a SCI. The rate of secondary health problems among people with a SCI is about three times the rate of nondisabled people.
27	The Next Slide Shows The Percentage of People, With and Without SCI Who Have Trouble With Glucose Metabolism
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29	As Can Be Seen, By About Age 45, Three Times As Many People With SCI Have Diabetes Compared To Their Nondisabled Counterpats
30	The next slide shows how breathing ability decreases over time in people who have tetraplegia compared to what would be expected if they did not have tetraplegia.
31	Expected FVC % Predicted
32	As you can see, people with SCI decrease their breathing ability more and earlier.
33	Another common problem among people with a spinal cord injury is the loss of bone mass in certain locations. This in turn leads to a higher rate of fractures in those same locations.
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35	So What Should You Do? Because these and other medical problems are common, you should consult your doctor regularly. Ask for screening of most health problems and tell him or her that many health problems occur earlier in people with SCI. Make sure you understand your own health status
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38	The Most Common Problems That Impair Function Are: Pain Fatigue New Weakness New Medical Problems
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40	Not To Mention The Age-related Organ System Changes That Are Occurring This lowered reserve capacity challenges the ability to absorb new stresses
41	The Next Slide Shows The Number Of People With SCI in A Sample Who Reported Changes In Their Functional Abilities
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43	People With SCI Have More Of These Problems than their Nondisabled Counterparts People With SCI Have More Of These Problems And More Severely
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45	The Next Slide Shows The Location Of Pain In People Aging With SCI
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49	Each Of These Causes Needs to Be Evaluated By your Doctor Or Therapist
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53	These Changes In Pain, Fatigue and Weakness Often Lead To Other Changes
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55	And These In Turn Lead To Lifestyle Changes Shortened day of being active “Trading off” or giving-up valued activities Forced choice: Preserving energy to maintain employment Mode of mobility changes Early retirement New resource needs (financial, personal care, equipment, social support)
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57	Clinical Management of Functional Decline Prevention Screening Early detection of those at risk. Identify persons with symptoms associated with functional decline Comprehensive assessment Multi-disciplinary team or single discipline Early intervention Specialty services i.e. function focused evaluations - best if performed “on location” Consider spectrum of activities and demands
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59	Strive For The Cumulative Effect Of Small Changes
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62	Proper Assessment and Treatment of These Problems Can Also Help
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64	Psychological Aspects Of Aging With SCI
65	Specifically, The Issue Of Positive And Negative Quality Of Life
66	Quality Of Life (QOL) can be thought of as existing on a continuum, from negative (low) to positive (high)
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68	The Next Slide Shows Other Ways To Describe Different Points On This Continuum.
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70	We Measure Quality Of Life Using A Single 7-point Scale.
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72	If You Want To, You Can Measure Your Own Quality Of Life. Just follow The Directions On The Next Slide.
73	Directions: Taking everything in your life into account, please rate your Quality of life on this 7-point scale, where 1 means life is very distressing; it’s hard to see how it could get worse. A 7 means life is great; it’s hard to see how it could get better. You may use a half point scale if you want, like 3.5 or 5.5.
74	Let’s now compare you to other people.
75	Cumulative Percentages Of QOL Ratings (n=1,000)
76	Research suggests that scores of 1 to 4.5 are relatively low, that scores of 5 to 5.5 are medium and scores of 6 or higher are high.
77	The next question is What causes high v. low quality of life?
78	First, research clearly indicates that QOL is not related to the severity of the impairment the person has nor to the degree of disability.
79	Instead, research indicates that other factors are important. In fact, there appear to be two main factors. One factor relates to why some people have a low QOL and a different factor relates to why people have a high QOL.
80	The factor that seems to explain low QOL is difficulty coping with the many stresses brought about by disability and aging
81	One of the likely results of difficulty coping is depression. Depression both causes low QOL and is caused by low QOL.
82	Why Depression Is A Major Issue In Aging And SCI It is poorly recognized Prevalence is between 25% and 50% It greatly affects health and function It is not self-limiting and will last for years if not treated
83	Depression Scores Across Impairment Groups
84	The next slide shows athat peoiple with SCI who experience changes in their function due to aging-related problems have lowere QOL
85	Quality of Life as Related to Change in Functioning In People Aging With SCI
86	Like Quality Of Life, depression is unrelated to either the seerity of the SCI or the degree of disability. About 40% of people with a SCI have a co-existing depression.
87	Aging, Depression and SCI In a Small Sample: What It Relates To Correlations from a Toronto sample (n=70) Age none Health .35 Level none Finances -.35 Duration none Social Support -.55 FIM none
88	Depression, Aging and SCI In a Large Sample Study of 1,391 people with SCI of all levels Rate of overall depressive disorder = 48%, half of which was major depression Unrelated to level of injury Correlation with current age = .09 Correlation with age at onset = .11 Correlation with duration = n.s.
89	The Effect of Socio-economic Resources on Rate of Depression in SCI
90	Treatment of Depression In SCI: Outcome Is Unrelated To Age Or Duration
91	Treating depression results in improvement of it as well as life satisfaction and community activities after six months.
92	What About Positive QOL?
93	$5% of people have high Quality Of Life. What’s different about them?
94	It’s not the degree of disability or the severity of the impairment. Instead, the key seems to be the ability to maintain valued activities
95	What Kind Of Activities Add The Most to Quality of Life? Family and social activities Work or volunteer activities Feeling productive Having fun Having a pupose in life
96	For Further Information and resources, contact the RRTC on Aging With A Disability