NEEDS AND CONCERNS OF
SENIOR FAMILY CAREGIVERS:

A brief overview of the Sarnia Seniors Study Peter C. McMahon, MSW, Ph.D
September, 1999

Edited for the internet by K.Holmes, June 2000 and April 2004 (k.holmes@cogeco.ca)

INTRODUCTION

In the International Year of the Older Person, it is appropriate to draw attention to the needs and concerns of a large group of senior family caregivers (i.e. over 55 years of age) who have adult sons or daughters with developmental disabilities still living at home. These are the families who, as early as the 1950's, decided to care for their son or daughter at home and in their local communities as opposed to early institutionalization. The results of this community based research project, conducted in the Ontario border city of Sarnia and the surrounding rural area of Lambton County by Community Living Sarnia may further sensitize the professional community to the issues and needs of elderly caregivers and open discussion on needed community services for such families.

This paper will present the major findings of the initial needs assessment and conclude with a brief description of the program initiatives employed to meet a number of the identified needs.

The paper is directed to the senior family caregivers in other communities experiencing some of the same major problems and needs as those of our people. It may attract the interest of senior family caregivers who continue to function at a very high level, but may be interested in working with chronically ill and socially isolated senior caregivers who need a good deal of help in their communities. In fact, as it will be discussed later, it was a group of senior family caregivers who were instrumental in the initiation and development of the project.

It is directed also to board members, senior executives, and staff of community agencies providing support for family caregivers and their sons and daughters. Finally, we fervently hope that the needs of these senior caregivers will be drawn to the attention of the politicians, as well as the general public, who are in a position to urge authorities to direct some of the limited funding available to help meet a number of these identified needs.

THE MAJOR ISSUE: Who Will Carry On?

This query has been posed increasingly by a growing number of senior parents who have adult persons with developmental disabilities still living at home. The question became a major issue in Sarnia and Lambton County in the early 1990's. Initial concern was raised through a local needs ssessment survey of the overall population with developmental disabilities. It was reinforced by a self-help group of senior parents known simply as the Advocacy Group. Both sources expressed fear that many of the senior families, particularly the very elderly, chronically ill and socially isolated, required assistance in long-term planning for their ageing son or daughter. Further, many were widowed, in their seventies and eighties, and were caring for the Person on their own. Examples were cited concerning the traumatic effects on an older son or daughter when no long-term plan of care was in place, and the major caregivers either died or became totally debilitated as a result of serious illness or accident. The sense of sudden loss and helplessness is quite devastating to the son or daughter with a developmental disability. The literature has also dealt extensively with this issue. (Grant 1990, Lutzer and Brubaker 1988, McCallion and Bregel 1982, Seltzer, G. 1991) One article published in 1991 speaks to the need for "permanency planning".

"Of equal or greater concern is the potential impact that the absence of permanency planning may have upon the adults with mental retardation who live as household members of natural family units. In addition to the significant emotional trauma of the sudden illness or death of a parent caregiver, such an event may precipitate an extremely stressful care crisis that may ultimately result in inadequate or inappropriate care arrangement. (Kaufman, Adams and Campbell 1991, p. 299)"

The situation becomes increasingly grave when parents have assumed either community agencies or an interested relative will "move into the breach," and care for the Person on a long-term basis. Unfortunately, such agencies have very limited resources available to assume long-term care. Given current extreme government financial restraints, the situation has become quite critical. Depending upon a relative, even a sibling of the Person, may be unrealistic given their own family needs and lack of a firm agreement established in the past.

DEVELOPING THE PROJECT

A sympathetic and concerned group of board members and the Executive Director of Community Living Sarnia-Lambton provided substance to the issue by agreeing to provide staff time and funding for the first three years of a community research project to explore the needs of these senior family caregivers. No government monies were used. Funds were raised from community sources and a research consultant was hired to develop the project.

Extensive consultations were held over the next year with key community informants , including area service providers, management, and Board of Directors of the Sarnia Association and representatives of the Sarnia Advocacy group.

Initial discussion favored a traditional needs assessment study into the needs of senior individuals and their parent caregivers, and the publication of a final report to be presented to the Provincial Government and to the community. This report would feature clearly identified needs, case studies, and programme proposals for additional government funding.

The changing political climate in Ontario in the early 1990's seemed to work against the possibility of new programme initiatives. Given this change, the decision was made to pursue a more generalized approach involving the development and increased use of social support systems and programmes in the community. This meant that members of the target groups - senior parents with sons or daughters living at home, became PARTNERS with staff and the Board of the Sarnia Association and other service providers in the area in the proposed overall project. Thus, the employment of a needs assessment study became only part of the process. Providing and improving access to existing programmes, establishing self-help groups and testing modest, new, low-cost programmes to meet identified needs became the major focus of the group.

An advisory committee to the project was established composed of Sarnia Association Board members who were also senior parent caregivers. This committee, with the addition of a representative from the Advocacy Group, provided significant input to the initial design of the needs assessment study including methodology, types of sample, and the questions to be included in the open ended questionnaire. In fact, the committee, in reviewing known situations of elderly families who seemed to be quite isolated and vulnerable, offered the suggestion that social workers with extensive family experience should be hired to conduct the fact-to-face, three hour semi-structured interviews with the parents.

This strategy led to the decision to encourage the social workers to offer crisis intervention and supportive counseling services to the parents when interviewed, if the family appeared to have pressing unresolved issues requiring some level of professional intervention. The potential vulnerability of an ageing population and the lengthy period of time required to complete the needs study on a limited budget/and with part-time staff supported this approach. The research methodology was drawn from Research Methods for Social Work, a research text.(Rubin and Babbie 1993).

Initially, the major goal of the Project was described as needing to "...meet the identified needs of senior parent caregivers and their adult sons and daughters by exploring and testing various methods of helping them plan for the long-term future of their son or daughter."

Major tasks that developed from this goal included:

In examining the data and findings of this study, the reader should note that we did not select a probability sample. Given that a number of senior caregivers in the area were identified as "in crisis" we chose to employ a "quota sample" that included all families who wished to be involved in the project. While this approach met the immediate needs of many families, it did limit the extent to which we could generalize the results beyond Sarnia and Lambton County. However, during the many presentations and workshops exploring our work, senior parents, board members, and agency personnel have expressed assurances that similar situations with the related needs exist throughout Ontario, and perhaps in other areas of the country.

THE PROJECT

This section will focus on the major senior parent caregivers, who they are and a number of their major issues and needs. The latter include the caregivers health problems and types of stress, and the level of support they receive in caring for their son or daughter. We will conclude this section with a discussion of ageing and separation and what plans have been made to care for the son or daughter following the major disability or death of the parents.

The Families: Ninety-four sets of family caregivers met the basic criteria; namely that at least one of the caregivers in the family was fifty-five years of age or older, supporting a family member with a disability who lived with the caregivers. Two other families were included because, although the caregivers were less than fifty-five, each was supporting a sibling (of one of the caregivers) who was in the appropriate age-range. Sixty-six families (out of the ninety-six) agreed to be interviewed; of these, 53 families lived in Sarnia and the remaining 13 elsewhere in the county.

Table 1 shows that the caregiver(s) in six of the families were over 80 years of age and that, in four of these families, there was only one caregiver. In the 71 to 80 group also, four were single caregiver families. This is particularly significant when factors such as health issues and the ongoing stress of the daily care and support of an ageing disabled person are considered. Research shows, and our own findings confirm, how all of these factors ... age, poor health and stress, lead to very vulnerable, fragile situations.

Table #1 - Age Distribution of Major Caregivers (N=66)
  Total One Parent Two Parents
Total Responses 66 19 47
80+ 6 4 2
71-80 15 4 15
61-70 23 6 17
55-60 20 5 15
41-54 2* 0 2

*This includes two sets of younger caregivers who were the siblings of older persons with developmental disabilities.

Caregivers' Health Problems and Types of Stress: Table 2 shows the range of major health problems identified by the caregivers.

Table #2 - Major Health Problems Identified by Caregivers (N=66)
(Multiple Responses Requested)
Health Problem Times reported
Arthritis 18 (27%)
Heart Disease 13 (20%)
High Blood Pressure 12 (18%)
Severe Back Problems 12 (18%)
Diabetes 8 (12%
Cancer 7 (11%)
Asthma 3 (5%)
Phlebitis 3 (5%)
Serious Eye Problems 3 (5%)
No Major Health Problems 35 (53%)

Problems such as arthritis (27%), heart disease (20%), high blood pressure (18%), and severe back problems (18%), were the most frequently reported chronic ailments. While 53% of the family caregivers indicated that no major health problems existed in their family units, a number of the sample reported experiencing multiple health problems that left them quite fragile and limited in mobility. Problems reported as arthritis and severe back problems were frequently attributed to the constant lifting of the son or daughter throughout the 24 hour day. Some caregivers noted that they had only acquired knowledge of proper lifting techniques and the need to stretch from professionals after they were injured.

While 35 (53 percent) of the families reported "no major health problems", most of the remainder reported multiple health problems...

These problems were not restricted to the elderly, but fell across all age groups.

When asked to describe the type of stress they experienced due to their son's or daughter's health and physical problems the parents reported the following in Table #3A.

Table #3A - Types of Stress on Caregivers due to Person's Health and Physical Problems (Multiple responses requested)
Person Requires... Times reported
Constant reminding (self-care, chores) 28
Constant supervision 23
Assistance with mobility 17
Assistance with washing, dressing, shaving 15
Diet supervision 10
Protect from falling 8
Intimate personal hygiene 6
Night assistance with catheterization 1
Requires little or no assistance 25

A close examination of the most reported stressors - constant reminding, constant supervision, assistance in mobility and assistance with washing, dressing, and shaving all require daily work on the part of the caregivers. In addition, the assistance with mobility, protection from falling and offering intimate personal hygiene suggests significant physical lifting and supporting. This activity may be particularly difficulty for ageing parents or those who have developed arthritis or back problems from lifting but are REQUIRED to continue the activity as long as the son or daughter remains in the home.

Closely related to the above, but on a more personal level, the senior parent caregivers reported the following major sources of stress.

Table #3B - Other Stressors for the Caregiver (multiple responses requested)
Stressor Times reported
Lack of long-term plan for son or daughter 48
Ongoing demand regarding care of Person 27
Parent fears effect of [parent's] death on Persom 21
Lack of "private" time 16
Scarcity of support resources/services 11
Elder caregivers lonely and depressed 11
Daughter with a disability dating 9
Uncaring attitude of government people 9
Physical demands of caring for a 45+ year old "child" 8
Pressure: 24-hour care, alone 8
Other (not specified) 6
Financial - small pension, insufficient funding 6
Morning organization 6

While it was felt that the parent caregivers in this study would experience a certain level of stress and associated health problems, we underestimated the extent and seriousness of these problems. In addition to data from the three hour long, in-home interviews with the caregivers, the opportunity presented itself to gather further information when participating with Sarnia Association staff in the beginnings of the support planning process with a majority of the families in the study. Initially, it was assumed that the descriptor, "elderly, fragile, and chronically ill" when combined with, "single parent," identified a majority of the senior parent caregivers who would require additional support services. In fact, a number of the younger caregivers, in the 60 year old range, were found to be suffering from debilitating chronic health problems. This group, numbering 14 families, seemed to be quite isolated from their extended family, friends, and other resources in the community. We concluded that the major health problems in combination with the number of social and family issues disclosed by these families, could lead to major family instability. This instability would make it difficult for these families to access needed programme opportunities on their own. However, the limited size of the sample, and the commitment to maintain confidentiality with the caregivers precludes further exploration of this area of investigation. As noted later a number of opportunities, including respite services, crisis intervention, and supportive counseling, were offered to these families where appropriate.

Several preliminary observations may be made at this point about the parental caregivers. First, many of the caregivers with chronic, debilitating health problems may use their sons or daughters as their own "arms and legs" to help extensively with such chores as housekeeping, shopping, and meal preparation. Second, the lack of physical mobility of some of these caregivers may contribute to their social isolation; they are simply not sufficiently mobile to make their way around the community. Finally, although the project team did not focus on family finances, they determined that many of the chronically ill caregivers were forced to leave the work-force prematurely due to their health conditions. This situation has left them with small company pensions and, frequently, dependent financially upon their son or daughter's government pension.

As a footnote to the research design, it should be noted that the project team was in favour of exploring the financial situation of the senior parent caregivers. However, the parents on the Project Advisory Committee vetoed exploration in this direction citing the privacy issue. It was also stated that the three hour interview and the personal (family and marital) questions would be quite invasive and further probing would be threatening to many of these very private families. We reluctantly went along with the Advisory Committee decision.

Level of Support For Parent Caregivers

During the initial family interviews we asked the parents: "Who helps you with the care of your son or daughter?" Table #4 depicts the rather disturbing results. Sixty-five percent of the respondents reported "no assistance." (There are slight inconsistencies due to 'rounding'.)

Table #4 - Assistance for Caregivers (as One- and Two-parent families) (N=66)
Type of assistance Overall One parent Two parents
No assistance 65% 65% 61%
Sister(s) of Person 15% 9% 18%
Brother(s) of Person 8% 4% 10%
Association respite programmes 6% 13% 2%
Family friends 3% 4% 2%
'Special Services at Home' 2% 0 2%
Grandmother 1% 0 2%
Neighbour(s) 1% 4% 0

The slightly higher number of single parents (65%), many of whom are elderly and chronically ill, suggests that they are exposed to consistently high levels of stress. Also, their son or daughter with a disability would be put in a highly vulnerable position should the parent become seriously ill or hospitalized. A secondary query elicited the information that a vast majority of these parents had no children or close relatives within a 200 mile area. Also very few reported "close friends" in the area.

A final point to be made in this area relates to the use of peer support by the caregivers. Only 29% of the total group reported attending one of the local support groups. Again, a mere 26% of the single parents reported participation in such a group.

Given the level of vulnerability present in many of these situations, we gently - but firmly - referred these parents to the new respite programme, introduced in 1993, so that some assistance and relief could be implemented as soon as possible. In fact, over the next year, we referred all of the families to the respite programme.

Since its inception, the Respite Programme has offered services to all parental caregivers on the basis that all caregivers need support, and the opportunity to spend some time on their own, on a regular basis. An innovative feature of this particular programme relates to the out-of-home respite offered to the son or daughter in order to allow parents to do chores around the home. The theory and practice behind this approach is briefly described later in this paper and in a comprehensive manner in the Internet version of the project report.

Ageing and Separation: As stated in the Introduction, this project was stimulated initially by the question asked by senior parent caregivers, "What will happen to my son or daughter when I am gone?" When asked if they had discussed ageing and death with their developmentally challemged Person, 45 families (69%) of the parents indicated that they had held such a discussion. Going one step further, parents were requested to discuss their current plans for dealing with their death or debilitating disability as it pertained to their son or daughter. Table #5 outlines those current plans:

Table #5 - Plan for Person Following Parents' Death or Disability (N=66)
Plan Description Number
Live with sibling 21
Association residence - sibling as advocate 12
Vague plans involving extended family 7
Parents under 60 - "no need" or "too soon" to plan 6
Plan involving Community Living 6
Assume care will be provided 6
None - parents reluctant to discuss 5
On "waiting list" for residential programme 5
Stay with sibling, but doesn't grasp death 5
Total independence 4
No specific plan 3
Live with aunt 2
Live in parents' home with Community Living support 1
Already in Supported Inependent Living Programme 2

We were quite concerned that at least 13 of the 21 parents who responded "live with sibling" seemed to be quite unrealistic. In many of these situations the parents and person with developmental disabilities had not kept in regular contact with the designated sibling. Other parents referred to either an informal agreement made as long as ten years ago and not renegotiated since, or to the vague assumption that a sibling would take over in a time of need. It was fortunate that a majority of these parents indicated an interest in further support planning with project team members, the goal of which was to clarify plans of this nature.

A number of other plans, including "vague plan involving extended family" (seven cases), "assume care will be provided" (six cases), and scenarios such as "no plans" or "parents reluctant to discuss", suggests that further support planning would appear to be warranted. Finally, the response, "parents under 60..." (six cases), suggest that some parents need to reassess their situation very seriously.

On a more positive note, "Association residence with sibling as advocate" indicated some preliminary planning, and the ongoing involvement of an immediate family member. We were quite surprised to note that only one set of parents suggested a plan involving "live in parents' home with Association support" This approach is gaining both acceptance and popularity across Ontario, and it is expected that it will be employed more frequently in Sarnia and Lambton County in the future. It must be noted that these particular findings were rather expected. In addition to the numerous observations made by people working in the field, the research literature tends to support these observations. Kaufman and associates reported a similar finding in their exploratory study of older parents.

"Perhaps the most important finding to have emerged from this exploratory study is that more than half of the sample of parental caregivers had not made any concrete plans for the future care and well-being of their adult children with mental retardation. This finding signals potential problems of considerable magnitude for mental retardation service-delivery systems." (Kaufman, Adams and Campbell 1991)

OVERVIEW OF PROGRAMME INITIATIVES

In the final section of this paper the various service initiatives and programmes developed for the project will be briefly described. The reader is again referred to the final report on the Internet for a more complete description of selective initiatives and the supporting documentation including computerized instruments. It should be noted that a number of services developed to meet the needs of this population have continued to grow and expand. The respite programme to be briefly described in this section had been in the early stages of development as the needs assessment portion of the project was nearing completion. We essentially referred the senior parents to the programme and the respite services adapted its structure to meet their needs.

Supportive Counseling: In the developmental phase of the project the senior parent Board members on the Advisory Committee observed that many of the known elderly parent caregivers were quite isolated, chronically ill and frequently in crisis. This observation was primarily responsible for the decision to hire professional social workers with extensive family experience on the part-time basis to conduct the extensive in-home interviews with the senior parents. This quickly proved to be a sound decision as the social workers essentially offered crisis intervention and supportive counseling services to 14 of the 66 sets of parents in conjunction with the family interviews. Such services have continued to be offered on an ongoing basis to any of the parent caregivers as required. One research study described the value of this method as...

"Supportive counseling could assist parents to better identify, predict and understand their children's future care needs and could help them realistically explore available alternatives that might be used to ensure that those needs would be met. Such an approach should also include an assessment of the parents' informal social network resources to identify the type and degree of potential future assistance that might be available from family members, friends and neighbors." (Kaufman, Adams and Campbell, 1991)

Support Planning Initiatives: As noted in the initial part of this paper one of the tasks undertaken by the project was "to explore support planning models with staff and families". Preliminary results of the needs assessment study reinforced the need for some form of support or permanency planning for a majority of the families involved with the project. The large number of parents with no plan or one that appeared to be quite unrealistic highlights this observation.

In searching for a model or process that would help sons or daughters and their families participate in support planning it became clear at an early stage that a number of models and processes were available. It also became evident that a number of the families, (perhaps 40 percent) were not ready to engage in formal support planning before a considerable amount of preliminary work was undertaken. This work included:

Over the course of this project we were able to provide some form of support planning services to approximately 90 percent of the families in the Project. Some of this planning was accomplished by project staff while testing the various models. The remainder took place as senior staff of the agencies took their support planning training back to other families who were being served by other related services in the community. Some form of support planning is now offered to new family caregivers arriving in Sarnia and Lambton County.

Respite Services: The intent of respite service programme was to provide a temporary or extended period of relief for parents of a son or daughter with developmental disabilities. The general aim of the Sarnia Respite Services is to offer a WIDE array of options that meet the UNIQUE need of EACH family unit. The services are multi-purpose and attempt to accomplish the following goals.

The respite service has been used by project staff in a rather unique manner. It has been used as a transitional programme for senior caregivers who were found to be excessively overprotective of their son or daughter. Offering a gentle continuum of out of home programmes that gradually expanded from an afternoon to a weekend to eventually a week's holiday? in a respite apartment seemed to be particularly effective in alleviating the fears of overprotective parents. This service continues to be offered throughout the area.

REFERENCES

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