System-Linked Research Unit
Working Paper Series #95-04

ASSESSMENT OF RESPITE NEEDS: CAREGIVERS OF COGNITIVELY IMPAIRED PERSONS LIVING IN THE HALTON COMMUNITY

J. Roberts, G. Browne, M. Denton

NOT FOR CITATION WITHOUT PERMISSION

PROJECT SUMMARY

Glen Abbey United Church and the Alzheimer Society for Halton-Wentworth have proposed a Halton Alzheimer Respite Care Centre. The plan for this facility is suggesting an array of respite care services: day programming, education, counselling, and residential rooms for short term and emergency respite. Questions remained related to the need for these kinds of services in Halton Region.

This survey in Halton Region assessed the need for and use of respite services. There were 2 phases to this survey. Phae 1 assessed informal caregivers' perceived needs and use of respite care (n=102) whereas Phase 2 assessed community respite care needs as perceived by providers of respite services (n=13) in Halton. Service providers included those from: Allendale Home for the Aged, Bethany Rest Home, CAMA Woodlands Nursing Home, Joseph Brant Memorial Hospital/Community Health Services Centre, Alzheimer Society for Halton-Wentworth, Halton Helping Hands, Halton Placement Coordination Services, Milton Place Seniors Day Program, Red Cross Homemaking, S.E.N.A.C.A. Senior Day Program, Social Services/Georgetown & District Memorial Hospital, Social Work and Discharge Planning/Oakville-Trafalgar Memorial Hospital, VON Seniors Day Program.

In summary, this survey indicates 59% of caregivers are over 65 years of age and 75% were women. As well, 36% of caregivers are very tired, 52% indicate their own health is a worry to them and 20% are having difficulty managing. Most caregivers (90% of whom are from Burlington and Oakville) want respite in their home but up to 34% would use out of home services. Of those over 65 in Halton (n=30,165, 1991 census), if 8% have cognitive impairment (n=2413) and assuming that one third of these are in early phases of cognitive impairment not requiring respite and one third are in late phases requiring institutionalization, then only one third are potential users of respite care (n=804). Since these study findings indicate 26% of the caregivers of this 1/3 of cognitively impaired will likely use overnight arrangements outside of the home for a possible average of two weeks, then 210 overnight placements for two week durations are required or 8 beds in a facility operating year round. In addition, 10% are likely to use respite care in a crisis situation, and 18% for planned respite care less than 1 week. Thus an additional 2 to 3 beds should accommodate these needs. If those cognitively impaired under 65 years of age also used planned overnight respite beds, another 1 to 2 beds would be required. Thus in total, it is projected that 12 beds are needed and this would not allow for an increased need or use related to a new specialized facility that more caregivers would be aware of and would find more acceptable. Since many caregivers indicated they did not know if they would use overnight respite care in the next 6 months, (42% for crisis care, 60% for less than 1 week and 38% for 1 to 4 weeks) the potential for growth is great.

If 210 people each receive two weeks of overnight respite at $100 per night in an eight bed facility, then (8 x $100=$800 per day x 365 days per year=$292,000 210) $1,390 per person per annum is spent (2 weeks respite) versus $5000 per person per annum estimated to be now spent on hospital days. Expenditures for a night in a hospital is $505. In summary, it is cheaper to have this overnight facility than to continue to use hospital beds apparently used for respite.

Currently, caregivers most likely to use health care services, which includes hospitalization, are those who have lived with the illness longer and/or have lower incomes. Preference for overnight respite beds could be given to informal caregivers with these characteristics. The caregiver most likely to use respite care is the person who indicates greater problems with the need for constant supervision and their relative is male and has had their illness longest.

Community services such as day programmes, community nurses, homemakers and alzheimer society programmes that caregivers are presently using are rated as very helpful.

It is thought that the present respite care beds are not meeting all respite needs; mainly because most respite care is not specialized for Alzheimer patients, there are few spaces for immediate crisis care, and required amounts of supervision and safety within the environment is lacking in some of the current facilities. The overnight respite beds in North Halton were used and found useful.

Day programs are considered an extremely valuable component of respite care, and 48% of caregivers would probably use these in the next 6 months. Since there are currently 27 Halton residents on waiting lists for the present programs, a facility should also include a day and possibly evening program with at least 25-30 spaces. It appears that the 12 proposed spaces in Milton would also be used and are needed.

In an attempt to compare expenditures for in-home respite services with those at a respite care centre, the average annualized expenditure per person of homemaking, nursing and Meals on Wheels ($4,200) is the same as 42 days per year at $100/day at a respite centre. In addition, expenditures for 24 hours/day for a homemaker in the home, if used as a respite service, would be $15.40/hour x 24 hours or $370 per day. When this is compared to $100 a day at a respite centre, the government may be interested in examining alternative ways of providing respite care.

Important considerations in planning a facility include a home-like, safe, secure setting with personnel specifically qualified to care for clients with cognitive impairment and who would treat them with respect. A majority of caregivers want a respite centre close to their homes and one specifically geared to problems of the cognitively impaired. The proposed site in North Oakville is close to Burlington and Milton and thus may be the most convenient site to a majority of caregivers. Transportation and access to respite by caregivers from North Halton, would need to be facilitated.

Since most caregivers want in-home respite care, it may prove beneficial for this centre to consider assisting with the coordination of in-home respite services. The future role of a Multi Service Agency (MSA) in Halton in coordination of these services is still unclear.

Recommendations: Caregivers and service providers who responded to this survey indicated the need for:

		affordable and available overnight respite care, especially on a crisis or unplanned basis;
		in-home respite care as needed;
		day program facilities;
		specialized respite care for those with cognitive impairment; especially those who wander or are aggressive;
		a setting, home-like and safe, close to their home;
		personnel who are knowledgeable and respectful in the care of clients with Alzheimer Disease;
		adequate transportation to the facility.

In summary, we would recommend that the center have a high profile and be well known to all in the Halton community. It should be all encompassing and able to provide or coordinate a variety of respite care services: day and evening programs, crisis care, planned care both short and long term, and counselling and education services for caregivers. It is expected that with support and education along with a well designed facility specifically for clients with cognitive impairment, the use of overnight respite care would increase. Along with this increase, in use, other costly community health services such as hospitalization might decline.