The meaning includes an achievement by reaching the middle or heart of the circleof life. It reflects the strength of that circle of life. The achievement of a successful life by the elder is the ultimate goal - this elder is able to share the traditions and the values to the new ones coming to the circle. - Gilbert Courtois, Montagnais

NIICHRO started the Coming Full Circle project with a Literature Review. The Literature Review helped to uncover issues that affect frail elderly Aboriginal people in Canada. The information gathered helped NIICHRO researchers develop questions for Community Consultations needs assessments in three communities in Canada. For the Coming Full Circle training, NIICHRO used the following definition of the word "frail":

"Frail" means any person at any age that is physically, emotionally or spiritually unable to care for him/herself or complete daily activities without the assistance of a family member or caregiver.

Some of the main points from the Literature Review included:

Seniors (65 and over) are the fastest growing segment of the Canadian population.

Aboriginal people are generally considered "seniors" at age 55 simply due to the chronic diseases and disability issues that affect them at a younger age.

By 2016, it is estimated that 7% of the Aboriginal population will be seniors, with many becoming frail or disabled.

In the future, the frail and disabled population will require higher levels of care and social services.

We must keep our aging seniors active and motivated so that they continue to contribute their valuable knowledge to future generations.

Physical activity must happen throughout life, not just when age, frailty, or disability become issues.

The Aboriginal frail elderly are more likely to have chronic illnesses. They are also more likely to have activity limitations and physical disabilities. The rate of disability among Aboriginal people is very high in Aboriginal communities. Thirty-one per cent report a disability compared to thirteen per cent in the general population. Many frail or disabled elderly must leave their reserve to get the care they need. Disabled Aboriginal seniors are often discriminated against away from their reserves.

Those who are not active when they are elderly may experience pain, arthritis and chronic disease. The Literature Review showed that when people are not physically active in their earlier life, they might have to depend on others to help them later in life. Staying active throughout life is a way to stay independent.

Only 29% of males over 74 are physically active.

Only 19% of females over 74 are physically active.

The Literature Review showed that diabetes affects Aboriginal people at a very high rate. Diabetes among Aboriginal people is five times the national average. In the past, Aboriginal people had a very active lifestyle. That physically active existence has been replaced by a sedentary lifestyle and a diet high in fat, sugar, and processed foods. Older Aboriginal people suffer from diabetes and its complications more than any other disease.

Isolation, loneliness and depression also play a role in the life of the frail elder. Isolation can result from loneliness, such as loss of a spouse, loss of family contact, or a loss of independence or status. Depression can result from these factors and affects 2-5% of those over 65. Many older people are no longer independent enough to participate in organized activities. These people may need daily help for basic activities. To receive the care they need, many Aboriginal seniors are forced away from their communities and into unfamiliar, often urban facilities. An increase in physical activity and movement can decrease depression.

Motivation and meaning in life are often lacking or lost in older people. Unfortunately, society expects older people to be inactive. Some seniors may feel afraid or anxious to participate in activity programs. Helpers need to understand the fear that may be present in older people and develop their programs accordingly. Programs must include socializing and self-esteem building and have a lot of variety. These aspects keep older people motivated to stay active.

Lack of adequate transportation can determine whether a person can participate in local activities. Transportation is the service most needed and requested by the Aboriginal elderly. Many public transport systems are inadequate or expensive. The frail or disabled elderly rely on family or others to transport them. Without family and friends, many elders cannot access basic necessities such as doctors' offices, grocery stores, banks, churches or recreation facilities. Many communities have poor roads and lack sidewalks. Snow or ice can effectively prevent frail or disabled people from leaving their homes.

Housing plays a major role in the health of Aboriginal people - especially seniors. On-reserve housing is among the worst in Canada. Many homes have structural, plumbing, heating or electrical deficiencies. Frail or disabled elderly who stay on reserve are more likely to live in crowded conditions in homes that require repair. In addition, many homes and buildings on reserve do not have ramps or wheelchair access. Sometimes, housing concerns may force the frail or disabled elderly person to move to a place that can better accommodate their disability. For those who cannot get out of their homes to get care there is a risk of becoming housebound.

Home and community care is also important as people age. Older men and women desire to "age in place" or to stay in their home communities as they get older. This means that communities should have good home care programs set up. Older people should get regular visitors and help around their house. The availability of home care is an important factor in an individual's ability to stay in the community. Home and community care offers a more economical alternative to long-term or hospital care.

Mutual sharing is an important Aboriginal traditional value. In recent years, many Aboriginal elderly feel that traditional values have changed and there is less time to care for an older relative. Without the benefit of family, the elderly turn to the community. If they cannot get the care they need in the community, they must often turn to a social agency. Turning to strangers causes great discomfort and resistance because the tradition of mutual sharing is broken. There is a clear need for more Aboriginal home care workers who are trained to meet the specific needs of frail elderly or disabled community members, in order to ensure that care standards on reserve are equal to those off reserve.

It is a sad reality that poverty in Canada is increasing. The elderly face a high risk of being poor but frail older people with disabilities face an even greater risk. People who are poorer are less likely to be physically active. Poverty can mean that older people may suffer nutritionally and have fewer opportunities to remain active. Again, lack of transportation is a barrier to many things for people living in poverty.

Diet and nutrition are big factors in the health of the frail elderly. Nutrition patterns change with age and can become compromised as appetites become smaller. A decrease in physical activity may cause weight gain, which may disguise loss of muscle mass - resulting in increased frailty. Obtaining food, preparing it and eating it can all be challenging to those who are frail or disabled. If older people have trouble getting nutritious food, they may rely on junk food as an alternative. Many older people still eat their nutritious, traditional food. Eating traditional food creates a connection with culture and identity and can be very beneficial to health.

The legacy of residential school abuse has had a lasting effect on Aboriginal people - in particular the Aboriginal elderly. The legacy of residential schools affects many Aboriginal elderly as well as the generations that follow them. Abuses and loss of culture and tradition caused problems fitting into an urbanized or city environment. Residential school survivors require resources and programs that are accepting of their culture and tradition. Programs must consider healing and overcoming addictions.

There is also a direct connection between poor health and low literacy. The health care industry generally assumes that people can read and write at a high level. Those who cannot tend to get their daily information from the television rather than from books or newspapers. Patients must be able to understand medicine prescriptions and other medical instructions. Many older people who have low literacy skills need help with written information and cannot make sense of it entirely on their own.

After the Literature Review was complete, NIICHRO visited three communities and conducted Community Consultations with the frail elderly in those areas. In the discussions with the community members, NIICHRO used information gathered from the Literature Review research to develop questions for the participants. NIICHRO's goal was to discover if the same issues affected the Aboriginal frail elderly in the north, in rural and in city or urban reserve settings.

Coming Full Circle - Community Consultation Interviews Findings

The Community Consultation needs assessment process involved 8 to 12 frail elderly community members that lived near the area of the interview location. NIICHRO researchers visited the participants in their homes and interviewed them individually or with their spouse or partner. They were asked about issues that affect their everyday lives. The literature review identified key issues that affect the frail elderly Aboriginal population in Canada. These areas were further explored in Community Consultations in Sucker Creek, Ontario, Hobbema, Alberta, and Fort Liard, Northwest Territories. At the completion of the individual interviews with the frail elderly, the researchers spoke with community caregivers in each of the three communities. Altogether, 42 people were interviewed - including 29 frail elderly participants (20 women and 9 men) as well as 13 caregivers.

Each interview began with an opening session outlining the objectives of the Coming Full Circle project. Participants in the three Community Consultation areas were asked the exact same set of questions in the same order. The ideas were recorded on tape and also typed up by a recorder present at each session. An Aboriginal interviewer conducted the consultation with a non-Aboriginal person acting as the recorder. The interviews allowed for ideas, concerns, issues and recommendations to be explained fully and clearly. The ideas and topics presented were surprisingly similar and consistent throughout all three locations. There were eighteen interview questions and each interview took about one hour. What follows is the Community Consultation interview questions and an overview of the responses received.

General Questions About Daily Activities

What kinds of activities do you think contribute to a healthy lifestyle? Can you remember what types of activities you did when you felt the healthiest in your life?
What kinds of activities can you do daily to contribute to living a healthy lifestyle? Do you think you would feel stronger if you were more active than you are now?
Can you think of barriers that prevent you from living a healthy lifestyle?

Overall, the participants were not very healthy. Several suffered from one or more ailments including diabetes, arthritis, and heart conditions. Generally, their younger lives included more work and activity gathering food and surviving in a bush lifestyle. The other activities participants were involved in were baseball, cross-country skiing, square dancing, swimming, walking, housework and gardening.

In younger years, family life was a big source of activity. Raising children provided a lot of work and many of the elders were involved in their children's activities when they were younger. Almost all of the participants agreed that if they were more active they would feel better. Only three participants did not feel that increased activity would help them. Many participants were interested in being more active now, but could not envision themselves "exercising". Most of the elders felt that trying to do as much as they can for themselves was the most important element contributing to a healthy lifestyle.

Almost all of the elders spoke about inner or emotional health as very important. Several mentioned that visiting and talking to people was very valuable. Four participants mentioned that they wished that they could tell their stories to younger people so that their history could be passed down. The barriers to physical activity and improved health were related to disease, a history of unhealthy living including a poor diet and smoking, and the results of surgery.

About a third or ten of the people interviewed could not get out and around daily on their own. Many needed a lot of rest in the day and were concerned about going out a lot. Most of the reasons for concern were health and mobility related. Arthritis caused sore joints and backs; diabetes caused sore feet and created difficulty walking; surgery after-effects created a lack of mobility. Cardiac problems and stroke complications were also common concerns. Poor vision was also a factor. Several people suffered from both poor vision and hearing loss and felt this dampened their activity level. One of the women interviewed has to have her family help with her pills. She also needs help to dress when they are short of help in the lodge. One elder was so depressed that he didn't want to be around people and preferred to stay home.

Transportation / Housing

What types of transportation systems exist in your community? Can you access adequate transportation?

How accessible are the streets and sidewalks in your community? Can people in wheelchairs adequately move around the community and in their homes? Which facilities are hard to access?

What kinds of medical situations might require you to travel away from your community? How far do you have to travel?

What is your living situation? Do you live alone, with family, at a lodge?

Twenty-five of twenty-nine participants agreed that they could get transportation to do their most necessary tasks if they needed it. It was encouraging to see that all of the communities had a van to take people to appointments, shopping, or other outings. When asked about travelling to appointments, the minimum travel time noted for doctors' appointments was 20 minutes away from the community. Despite having transportation, sometimes community buildings were still not accessible. Often, if the buildings were accessible, the community streets were not. None of the communities NIICHRO visited for community consultations had sidewalks.

Existing Community Programs

What are some examples of opportunities for groups of seniors to get together in your community? Do you know how often the programs run?

If you cannot attend activity or educational programs, is the information in the programs passed along to you?

How do you learn about activities and programs in your community? Who would you turn to for assistance if you had questions about programs in your community?

In each community, there seemed to be no lack of programs for elders. Each community had an elders' drop-in centre. Examples of activities were weekly meals (lunches and dinners), card games, crafts, beadwork groups, elders' workshops on various topics, an over-50's club that goes on outings to different towns and events. However, though most of the participants were aware of local seniors programs, several did not do any activities with other seniors. Most did not feel up to going out because of their health and some were not interested in participating. Most of the CHRs and caregivers interviewed had a regular role in the lives of the frail elders in their communities and were the main point of contact for elders who had questions about community programs.

Chronic Disease - Diabetes

How does diabetes impact your community? Are there diabetes programs in the community that teach people affected how to live a healthier lifestyle?

Two of the three communities visited suffered from diabetes at a high rate with several people having eye, foot and kidney trouble. Only the most northern community in the Northwest Territories did not seem as affected by diabetes - the mayor and other health care workers in town confirmed this. Eight frail elders interviewed acknowledged having diabetes but seemed well educated on the subject. Five of the people interviewed who did have diabetes said they watched their diet carefully but agreed that they still did not get enough exercise.

However, even with community education about health risks for diabetes, many of the frail elderly interviewed still smoked, did not get enough exercise and did not eat properly despite doctors' orders to improve in these areas.

All participants said they had attended a diabetes education seminar at one time or another. Everyone agreed and acknowledged that their communities did a lot of work to educate their people about diabetes. There were monthly nutrition programs and educational seminars regularly. One community had a nutritionist who would come to town from a neighbouring city and visit elders in their homes to advise them on their diets. One participant believed that those who need the programs most do not attend and feel that there is nothing they can do about diabetes. Many of the elders told stories about their younger days when diabetes did not affect their communities - a time when they hadn't even heard of such a disease.

Education / Literacy / Communication

In the schooling you had in life, what did your education teach you about living a healthy lifestyle?

When you visit a doctor, are his or her instructions clear? Can you get help with understanding prescriptions or further information about your doctor's medical orders?

Formal education and schooling levels were generally low, and many left school at a young age - some to help out at home and some to run away from a bad experience. For those who attended residential schools, several mentioned that their knowledge about healthy living came in the form of how to stay "clean" but not necessarily how to live a balanced, active and vigorous life.

All but six of the participants agreed that they got good instructions from their doctors. If they needed it, a relative or caregiver was often available to help with understanding prescriptions and ensuring the right dosages. Several participants use traditional medicine and see a traditional healer or do smudges. One woman claimed she understands the doctor's instructions but does not trust him because of previous bad experiences at the doctor's office.

Family and Caregiver Support / Home and Community Care

Do you have family members or other caregivers close by to help you go to appointments or to go shopping? Who else in the community can help you if you need it?

How often does somebody visit you in your home? Who visits you (family, caregivers, friends)?

Can you describe any home care programs that exist in your community? Are there Aboriginal home care workers in your community?

Over half of the participants interviewed had caregivers or regular non-family visitors.
Many expressed a desire to see their families more often. There was much dependence on CHRs and homecare workers to provide information about local community programs. Several people, particularly in the Northwest Territories, were affected by isolation and sadness because of family members who did not interact with them as much as they could.

Nutrition

What kinds of traditional foods do you eat? Aside from traditional food, what other types of food do you eat?

Everybody loved to talk about food! Most participants knew what foods to eat to stay healthy but many were unable to get those foods regularly due to isolation, the inability to get around and out to the store or the lack of selection at the local market. Most still ate some traditional food and enjoyed it very much. Some examples of traditional foods eaten were:

o Rabbit
o Moose
o Muskrat
o Fish
o Deer
o Fowl
o Partridge
o Salt pork
o Duck
o Any wild meat
o Corn soup
o Bannock
o Berries

Many of the participants agreed that junk food is a problem for their people. In one community, potlucks are prepared and plates of food given to shut-ins. In order to get into the potluck, the younger members of the community must bring an elder.

Activity Preferences

What types of activity programs are you interested in? Would you like to participate in a group or class setting that taught health and movement activities? Would you prefer to be taught the basics and have a video to watch at home? If you had a video to watch, would you have help to perform activities?

Most of the frail elders interviewed were interested in being more active now, but could not envision themselves "exercising". With most participants, there was an issue of getting motivated enough on their own to do the movements involved in a health video. Many did see how they would be more inclined to do movement-centred activities with help from a CHR or caregiver. The main barriers to the use of a video were poor vision, poor hearing and lack of VCR equipment.

Caregivers Focus Group

At the completion of the individual interviews with the frail elderly, the researchers interviewed those who care for elders in their community. CHRs, home care workers, nurses, and therapists participated in the interviews. They were asked the following questions:

What functions do you perform as a caregiver to the frail elderly in your community?

What do you see as the main barriers to getting frail elderly people more active in the community?

What programs does your community provide for frail elderly people in the community?

Many of the caregivers interviewed have a wide variety of duties. The home care workers generally took care of cleaning the house, taking the elder on outings such as to the grocery store and generally looked after the needs of the elder.

Many caregivers mentioned that increased participation from family members was desired. Most of the caregivers wanted the families to take on more responsibility, as there was too much dependence on outside sources to do everyday chores for the elders. The caregiver group saw this as the main barrier to getting the elders to become more active.

In each community, there seemed to be no lack of programs for elders. Even the homebound elders were visited regularly and invited to weekly meals. Most of the CHRs and caregivers interviewed had a regular role in the lives of frail elders in their communities.

The communities of Chilliwack, British Columbia and Nain, Labrador were initially chosen based on their geographical locations and frail elderly demographics. While at the initial film site visits, the community members were asked informal questions and observations were made based on the interview guide used in the Community Consultations. In Nain, Labrador, elders were not considered to be as physically limited as in other communities visited. Due to its geographical isolation, the nearest hospital is over an hour away by plane. In Nain, the younger generations really help the older ones and this is reflected in increased elder participation in meetings and events. The elders seemed to have a greater sense of hope in Nain. It was decided that Chilliwack should remain a site for the film shoot but Nain was not as suitable. Nain was eliminated due to the limited number of elderly people who were considered "frail" by NIICHRO's definition for this project. In Nain, there were not a sufficient number of frail elderly people who would benefit from the training that NIICHRO intends to develop. It was determined that Hobbema, Alberta would be the second site chosen for filming of the training video.

Using the information gathered in the Community Consultation and Film Shoot site visits, ideas, images, and script concepts were developed for the Coming Full Circle video. Filming began in early June 2002.