To date we have completed assessments and revisited 51 participants. Nine people did not continue in the project after the initial visit. The reasons for dropouts include disinterest, inability to contact and sickness.
Table 2 presents data comparing self reported barriers from the Survey with barriers identified during assessments. Clearly, barriers are extremely under-estimated using the self report approach. The overwhelming one-sided nature of the results confirms our first hypothesis.
A total of 790 barriers were identified. This is an average of about 15 per household. However, the frequency of barriers varies significantly across the sample. Total barriers per household ranges from a low of 1 to a high of 72. The largest number of barriers observed were related to ADL and accident safety. Since we only completed the Behavior Problem Assessment for respondents with dementia, we only have data for that category of barriers for 10 households.
Each individual has a unique set of needs although there are many frequently occurring barriers. We tabulated all barriers encountered at least once. The total number of items in the survey was 158, not including construction items which were based on an open ended assessment format. We found only 89 non-construction barriers, 56% of the total possible. There were 85 additional construction items found as well for a total of 174 barriers.
Table 2 shows the total number of barriers in the sample's homes identified by our assessment and the percent of barriers for each type. The largest number of barriers by far were in the ADL group. However, Fire Safety, Security and Construction taken together account for about the same number as ADL and Behavior together. This indicates the importance of taking a broad perspective on barriers to independent living. Health and function issues alone are only half of the problem. Based on this survey, many fire safety, security and construction deficiencies exist in the homes of older people with disabilities.
Table 3 shows the top five barriers of each type and the top 10 overall. Ties are included so that some categories have more than 5 entries. In the ADL group, "using stairs" and "getting into and out of the bathtub or shower" are number one and two, respectively. They are both in the top 10 overall as well. Also in the top 5 of ADL barriers are three others related to repositioning including "sitting on or getting up from the toilet." This finding indicates that interventions to assist with repositioning can have a major impact on activities of daily living. These findings are consistent with our second hypothesis. However, in the top 10 overall, four are Security and three are Fire Safety concerns, again emphasizing the relative importance of these issues.
In Table 4 we combined the individual barrier items into categories of concern within the five types of barriers. Thus, for example, under "using the tub/shower" we grouped all reported barriers related to the use of a tub or shower including getting in and out, washing, cleaning the tub, reaching a towel and closing/opening the drain. From this more condensed data, the tub and shower and general circulation around the home emerge as more prevalent ADL barriers than using stairs. Difficulty using appliances and furniture also emerge as frequent barriers. In fact, they are almost as prevalent as difficulty using stairs. Thus, the priorities as suggested by the second hypothesis appear to be too limited.
Among the Behavior barriers, forgetfulness of all kinds is clearly the most frequent. This includes forgetting places, times, people and skills. By far the most common problem in this category was forgetting how to use familiar equipment such as appliance controls, faucets, doors and locks. A related problem is forgetting that appliances are on.
The Security group is headed by "unmarked valuables." Few people thought that this was an important issue. Although recommended by security specialists, it is not very common for any household to have valuables marked. Inadequate locks, doors and windows, are the next most common security barrier.
There were three quite prevalent barriers in the Fire Safety group: poor planning for escape, lack of a working fire extinguisher and inadequate smoke detectors. Very few of the households had ever had a fire drill. A few people did not know how to escape from their building if there was a fire especially those with dementia. The best escape routes in some homes were blocked. Few homes had a fire extinguisher in the kitchen where it could do the most good. Many homes did not have working smoke detectors at all and, in a relatively large number of homes, the detector was not installed in a recommended location.
The Construction group had relatively lower frequencies for each individual category. None stands out as more serious than the others. These barriers generally include deferred maintenance, that is, parts of the home that have deteriorated and never been repaired. Sixty percent of the households had no construction barriers. Three households had over 10. Clearly, there are some people that live in generally deteriorated housing. There was a significant difference in the amount of construction barriers based on location of residence. The urban households, which accounted for only 37% of the sample, had 69% of the construction barriers. This reflects the fact that the City of Buffalo has a much older housing stock compared to its suburbs.
The frequency of barriers was not found to be significantly different between homeowners and the renters. Most of the top ten barriers were the same in each group although there were some differences in the order.
When we revisited the households to discuss our recommendations and their priorities, we discovered that many people had already made improvements based on informal discussions during the survey and receipt of our list of suggestions in the mail. Table 4 shows the actions they had taken. In general, the modifications were focused on high priority concerns or the easiest ones to implement (e.g. low cost).
The priorities given to the individual barriers are also shown in Table 4. The residents gave low ratings to most barriers and related recommendations. Even some very frequently observed barriers were rated as a low priority. Less than a third received a "high" rating by more that half of the households in which they were observed. The higher priorities assigned to Fire Safety and Construction barriers confirms the third hypothesis. It also suggests that a complex of concerns that we might call "shelter related" problems would extend the Construction category to include fire safety and security issues.
In the ADL group, there were only four high priority barriers: using the tub/shower, using appliances, using the telephone and using the toilet. In the Behavior group there was only one, inappropriate behavior. In the Security group there was one, inadequate locks, doors or windows. In the Fire Safety and Construction Groups, however, a majority of the barriers were ranked high by more than half of the households in which they were found.
We identified fifty modifications that had already been made to participant's homes prior to our first visit. Almost all of them were ADL or Behavior related. The most common were handrails, grab bars and bath benches. Only four modifications were rated as "slightly effective" and eight as "moderately effective". All the rest were rated as "highly effective."
It is important that the quantitative data presented here not be used to belittle the significance of barriers that were observed in low numbers. Each barrier, no matter how infrequent it is for the population as a whole, can be very important to an individual household. A review of two specific examples is helpful to understand the impact of individual differences.
Although our findings demonstrate that older homes have many more construction related problems, they can be serious in newer homes as well. For example, one participant in a suburban neighborhood had a new window installed. It was done poorly, and after the contractor had been paid, water leaks were discovered in the house. Since the construction was financed through a publicly subsidized program, the owners attempts to get repairs completed without cost involved a battle with red tape. An attempt to solve an existing problem became a prolonged aggravation and a financial burden.
Poor property definition was found in only three households. One couple lived next door to a vacant lot where a house had burned down. This lot is used as a short cut by youths in the neighborhood to reach local stores. They often throw rocks at the house and break windows. The same couple had to have their mail delivered to a post office box so it wouldn't get stolen from their unprotected mailbox. The wife was the caregiver for her husband who had Alzheimer's Disease. To get their mail, she had to leave her husband alone while she went to the post office. He frequently "eloped" from the house while she was gone, left the door ajar andwandered through the neighborhood. A secure mailbox would make a significant difference in the quality of life for this couple.