The good and the bad – retirement homes have stepped into the gap to provide long-term care

My parents (86 years old, married 61 years) have only rarely been separated in the last 20 years. They have dementia and osteoporosis and additional health concerns. Three years ago their problems became acute, Dad was on the verge of burn-out as caregiver and it became clear they couldn’t manage at home any longer. I held Power of Attorney for them and consulted their physician and local Community Care Access Centre (CCAC) to explore options, including retirement and Long-Term Care (LTC) homes (the table below shows some of the differences between retirement homes and LTC facilities, although some are starting to blur). Mom and Dad moved into their retirement home in 2009 with extensive help from our family and the CCAC. It was the right decision – they have been happy and they are at ‘home’ with many friends amongst residents and staff.

Differences between Retirement Homes and Long-term Care Homes
Retirement homes		LTC Homes
Open	Eligibility	Eligibility and priority determined by application to the local CCAC and based on health need
Membership in a voluntary professional certification association	Accountability	Provincially regulated
Set by company, annual rent increases subject to provincial legislation, care rates vary widely	Rates	Rates set and subsidized by the Ontario government with assistance to low-income residents
Range from independent living → supportive housing and care → convalescent → complex long-term care	Services	Care and support for residents with complex long-term healthcare needs

This summer Dad was hospitalized due to a compression fracture in his spine. In five weeks he lost 17 pounds and his usual vibrant interest in life. His dementia kept him only minimally active in hospital routines. Without her partner, Mom’s dementia became more acute; she could no longer be left alone. The retirement home stepped in with advice and accommodated Mom on their high-care floor during the day when needed and I engaged a companion to help with nights. I was pleased when Dad moved into a ‘transition to home program’ at the hospital after two weeks, but stunned at the effort it required to get a formal recovery plan for him before discharge – it seemed self-evident that this was key to reducing Dad’s risk of another fall or hospitalization.

The top priority for my parents (and our family) has always been for them to stay together – and we are even more resolved given the severe disorientation caused by their recent separation. With CCAC morning and night care for Dad they remain in their retirement home together with friends and caregivers they know well, while on lengthy wait lists for beds in an LTC home – though not in the same queue. It also permits our family to provide support and stay regularly involved in their lives. A good ‘quality of life’ decision for the near term but a tough one financially.

Cost in a Retirement Home vs Long-term Care Home
Cost for Two in a Retirement Home*		Cost for Two in a LTC**
$ 6000.00	Accommodation, basic care and meals	$ 4443.28
1900.00	Extended Care	included
extra	Medications	included
extra	Daily supplies (pull-ups, etc.)	included
extra	Equipment(wheelchair, walker, monitors, etc)	included
$ 7900.00	Total monthly base cost	$ 4443.28

 * In a good but not ‘high-end’ retirement home.

** Private rooms (basic rooms are ~ $1600 per month per person); MOHLTC August 2012

The cost to my parents rose by $2000 per month this year and will exceed $100,000 assuming no change in their needs. The equivalent cost in an LTC is less than $53,400 – no matter how their care needs escalate and all supplies, equipment and medications are included.

It is Time to Do Better

The number of retirement homes advertising increasingly complex long-term care has grown steadily but legislation and certification standards are not keeping pace.  Indeed, rent protection ceases to apply if you change rooms within the same facility. As many retirement homes concentrate higher-needs residents on floors with higher staff ratios and/or special equipment and space, residents already facing new health challenges requiring a higher level of care too often end up hit with a double whammy – increases for higher care and for their accommodation. Talk about being vulnerable!

It is time to consider regulating and subsidizing the care provided in retirement homes as it is in long-term care homes. This approach could lead to new win-win partnerships beyond managing impossible wait lists: reducing the number of new facilities needed, improving quality of life of residents (and their families) by allowing them to age in place with their spouse, familiar settings and caregiver relationships. It could also allow harmonization of accreditation standards so that best practices are more quickly adopted in areas such as human resources and facility design.

My parents’ situation isn’t especially unique although they are relatively privileged by income and active family support (which I am frequently told, is not typical). And that is one of my points: many seniors have no advocate to negotiate the maze on their behalf and even then, $100,000 annually is outside the range of most couples.

Retirement homes have stepped into the gap to address the lengthy wait lists for LTCs and provide parallel long-term care within their facilities. Now government needs to step into the gap to revise legislation and certification standards to provide a better framework for this care – we deserve better.