The Frailty In Residential Sector over Time (FIRST) study: methods and baseline cohort description

Background The Frailty In Residential Sector over Time (FIRST) Study is a 3-year prospective cohort study investigating the health of residents living in residential aged care services (RACS) in South Australia. The study aims to examine the change in frailty status and associated health outcomes. Methods This interim report presents data from March 2019–October 2020. The study setting is 12 RACS from one organisation across metropolitan and rural South Australia involving 1243 residents. All permanent (i.e. respite or transition care program excluded) residents living in the RACS for at least 8 weeks were invited to participate. Residents who were deemed to be medically unstable (e.g. experiencing delirium), have less than 3 months to live, or not fluent in English were excluded. Data collected included frailty status, medical diagnoses, medicines, pain, nutrition, sarcopenia, falls, dementia, anxiety and depression, sleep quality, quality of life, satisfaction with care, activities of daily living, and life space use at baseline and 12-months. Data Linkage will occur over the 3 years from baseline. Results A total of 561 permanent residents (mean age 87.69 ± 7.25) were included. The majority of residents were female (n = 411, 73.3%) with 95.3% (n = 527) being classified as either frail (n = 377, 68.2%) or most-frail (n = 150, 27.1%) according to the Frailty Index (FI). Most residents were severely impaired in their basic activities of daily living (n = 554, 98.8%), and were at-risk of malnutrition (n = 305, 55.0%) and at-risk of sarcopenia (n = 492, 89.5%). Most residents did not experience pain (n = 475, 85.4%), had normal daytime sleepiness (n = 385, 69.7%), and low anxiety and depression scores (n = 327, 58.9%). Conclusion This study provides valuable information on the health and frailty levels of residents living in RACS in South Australia. The results will assist in developing interventions that can help to improve the health and wellbeing of residents in aged care services. Trial registration Prospectively registered with the Australian New Zealand Clinical Trials Registry (ACTRN12619000500156). Supplementary Information The online version contains supplementary material available at 10.1186/s12877-020-01974-1.


22.
Study nurse to obtain resident's consent 1 No: Please answer the following questions using resident's MNA-SF records: 3.1.1. Has food intake declined over the past 3 months due to loss of appetite, digestive problems, chewing or swallowing difficulties? [0] = severe decrease in food intake [1] = moderate decrease in food intake [2] = no decrease in food intake 3

Study nurse to observe the resident
Instructions: Observe the resident for 5 minutes before scoring his or her behaviours.
Please score the behaviours according to the following chart.
Definitions of each item are available here (link to more information). The resident can be observed under different conditions (e.g., at rest, during a pleasant activity, during caregiving, after the administration of pain medication). Study nurse to complete with the resident (only where possible or else omit) Instructions: Please answer these questions on how you feel about the care you are receiving in this facility over the past few weeks. (Please tick one option from the 6 questions below) 9.1. How much time are caregiving staff able to spend with you? [3] Care staff are always able to spend enough time attending to my individual needs [2] Care staff are sometimes able to spend enough time attending to my individual needs [1] Care staff are rarely able to spend enough time attending to my individual needs 9.2. Do the shared spaces of the aged care home as a whole make you feel 'at home'? [3] I feel very at home here [2] I feel at home here sometimes [1] I feel at home here rarely 9.3. Does your own room here make you feel 'at home'? [3] I feel very at home in my room [2] I feel at home in my room sometimes [1] I feel at home in my room rarely In each section, please circle the number that most closely applies to the resident. This is a general form, so no one description may be exactly right, please circle the answer that seems to apply most of the time.

Is there access to outside and gardens in this aged
Please circle only one number per section, and be sure to answer all questions.

MEMORY
[0] Normal memory [1] Occasionally forgets things that they were told recently. Does not cause many problems [2] Mild consistent forgetfulness. Remembers recent events but often forgets parts [3] Moderate memory loss. Worse for recent events. May not remember something you just told them. Causes problems with everyday activities [4] Substantial memory loss. Quickly forgets recent or newly-learned things. Can only remember things that they have known for a long time [5] Does not remember basic facts like the day of the week, when last meal was eaten or what the next meal will be [6] Does not remember even the most basic things

SPEECH AND LANGUAGE
[0] Normal ability to talk and to understand others [1] Sometimes cannot find a word, but able to carry on conversations [2] Often forgets words. May use the wrong word in its place. Some trouble expressing thoughts and giving answers

DEMENTIA SEVERITY RATING SCALE (DSRS)
P a g e 10 of 16 [3] Usually answers questions using sentences but rarely starts a conversation [4] Answers questions, but responses are often hard to understand or don't make sense. Usually able to follow simple instructions [5] Speech often does not make sense. Cannot answer questions or follow instructions [6] Does not respond most of the time

RECOGNITION OF FAMILY MEMBERS
[0] Normal -recognizes people and generally knows who they are. [1] Usually recognizes grandchildren, cousins or relatives who are not seen frequently but may not recall how they are related. [2] Usually does not recognize family members who are not seen frequently. Is often confused about how family members such as grandchildren, nieces, or nephews are related to them. [3] Sometimes does not recognize close family members or others who they see frequently. May not recognize their children, brothers, or sisters who are not seen on a regular basis. [4] Frequently does not recognize spouse or caregiver. [5] No recognition or awareness of the presence of others.

ORIENTATION TO TIME
[0] Normal awareness of time of day and day of week. [1] Some confusion about what time it is or what day of the week, but not severe enough to interfere with everyday activities. [2] Frequently confused about time of day. [3] Almost always confused about the time of day. [4] Seems completely unaware of time. [0] Normal awareness of where they are even in new places. [1] Sometimes disoriented in new places. [2] Frequently disoriented in new places. [3] Usually disoriented, even in familiar places. May forget that they are already at home. [4] Almost always confused about place.

ABILITY TO MAKE DECISIONS
[0] Normal -as able to make decisions as before. [1] Only some difficulty making decisions that arise in day-to-day life. [2] Moderate difficulty. Gets confused when things get complicated or plans change. [3] Rarely makes any important decisions. Gets confused easily. [4] Not able to understand what is happening most of the time.

SOCIAL AND COMMUNITY ACTIVITY
[0] Normal -acts the same with people as before [1] Only mild problems that are not really important, but clearly acts differently from previous years. [2] Can still take part in community activities without help. May appear normal to people who don't know them. [3] Often has trouble dealing with people outside the home without help from caregiver. Usually can participate in quiet home activities with friends. The problem is clear to anyone who sees them. [4] No longer takes part in any real way in activities at home involving other people. Can only deal with the primary caregiver. [5] Little or no response even to primary caregiver.