Facts of Life about Long Term Care

In Canada today, our rapidly aging population, combined with fundamental changes in our health care services from institutional care to community care plus our desire ‘to age in place’, is translating into an increased need for family members to care for their loved ones at home.  AS WELL AS, there is an increased need for each of us to plan for our own long-term care needs.

Do think you need a long term care plan?

Canadians should be asking themselves the following L.T.C. questions:

  • Have we considered care-giving as part of our lifestyle plan?
  • Should our own care be part of our expectations from our daughters and sons, our daughters-in-law, our spouse, those who love us?
  • Was care-giving and more importantly, becoming a care-receiver, part of our retirement dream?
  • Do we really want our children doing basic things for us? i.e. bathing us, dressing us, helping with our meals, etc?
  • How well do we handle stress now and what if it is increased?
  • Are we prepared to have our health or a loved one’s health affected by becoming a caregiver, what are our options?
  • What will be the impact of being a long-term care giver on our job/career?
  • How are we planning to handle our parents’ care?
  • How are we planning to handle our spouse’s care?
  • How are going to plan for our own long-term care needs?
  • What options do we have if we begin to plan NOW?

Let’s talk about the new facts of life:

It is likely, at some time, we will become a caregiver for either a parent or a spouse
At present, family caregivers comprise 1/3 of our total caregiver population– caregivers are most likely to be providing care to a spouse/partner (38%) or parent (33%).

There is a very high possibility if we are female, that we could be a caregiver two times in our lifetime, 1st. for an elderly parent, and 2nd. for a senior spouse
77% of family caregivers are female–the gender difference is greater among caregivers under 45 years of age, where 82% are women, many caring for a parent, compared with caregivers 65 and older, 71% are women, mainly caring for a spouseAs would be expected, most care recipients are seniors/elderly–more than half (57%) are at least 65 years of age, with 17 percent at least 85–parents being cared for by their children are mostly 75 and older

There is a good chance that we may become a caregiver during our retirement years
31% of caregivers are most likely to be retired

We know that care-giving is not linked to our overall income, that we may become a caregiver regardless of our income ability to hire someone else?
Caregivers can be found in all income strata –one in three (35%) report household incomes of $45,000 or more.

We may have to look after a loved one with ‘both’ a physical and a mental disability and this situation will be of a ‘long-term’ nature of perhaps 3 to 10 years
Recipients are most likely to be receiving care because of physical disabilities (61%), but close to 1 in 5 have both physical and mental difficulties requiring longer than 6 months of care–6 in 10 (62%) of the caregivers have already provided care for at least 3 years, and 1 in 5 (20%) have been doing so for more than 10 years.

We feel that caring for our loved one is our responsibility, but also feel we don’t have a choice as there is no one else or there are no home care services to help out.
67% of caregivers are looking after family members because they see it as a family responsibility or because they simply choose to do so (63%). Overall, the population is divided on whether or not they had a choice, with 52% saying they did have a choice, while 44% felt they did not

We know that if our parent needs care, mom and/or dad will probably move in with us
Just over half (55%) of parents are being cared for in their children’s homes-overall, most family care-giving is provided in the caregiver’s homes (77%), and this is almost always the case when the care-receiver is a spouse/partner (97%), a child, or someone with a mental disability

We know that most of our care-giving duties will be with the basics of everyday living (dressing our loved ones, bathing them, helping them move around, feeding, washing, shaving, doing hair, teeth.)
About 1 in 4 caregivers are providing daily assistance to family members in terms of basic hygiene, such as dressing, bathing, walking, feeding and assistance with toileting.

We know that when we become caregivers that our monthly expenses when care-giving are going to increase and that we must plan for this monthly budget increase
A significant proportion (44%) of caregivers are paying out-of-pocket costs to provide care to their family member–four in ten report spending between $100 and $300 per month on such expenses, with another quarter (24%) spending in excess of $300. (A note from P. Randall: in the first couple of years, my expenses, as a distance caregiver daughter increased $869/month for the little care-giving extras only, this does not take into consideration the major costs of caregiver fees etc. and remember all the expenses are after-tax dollars)

We know that no matter how hard we try, when we become a caregiver, we can’t be a good one 24-7-365 without a break, so we will need to find ways to share care-giving or hire assistance at some times
Caregivers are most likely to say they could use some help in allowing them to have a break from this responsibility, i.e. respite–almost seven in ten say they need a break from their care-giving duties either frequently (21%) or occasionally (47%).

We know that our provincial government provides some care services but we are surprised to find that very few currently receive these.  (Question: Is it wise to count on this type of assistance?)
Less 23% of family caregivers are currently receiving any formal home care services to assist in caring for their family member (i.e. personal care worker, nursing or homemaking assistance). If formal care is provided, it is most likely to be provided in the form of a personal care worker (40% of those who receive any form of care), nursing visits (34%), and homemaking (housekeeping, light meals) (26%).

We know that we will be able to see the problem much clearer when immersed in the everyday responsibility and that then we may identify more services that we may need that have nothing to do with our ability to pay, but what to do at that point will be the dilemma
One in three (33%) caregivers identify the need for additional home care services

While formal home care services is a way to reduce or manage the amount of personal involvement in family care-giving, this does not appear to be the case- it suggests that the use of formal care is more closely associated with care recipients requiring a lot of care (both family involvement and formal services) than as a means of minimizing such involvement.Also of note is the finding that uses of formal home care services is not associated with the amount that caregivers are paying in out-of-pocket costs.

We know that our stress levels are going to be increased significantly when we become caregivers, especially if women or if we feel we have no choice
Seven in ten (70%) acknowledge that providing care has been stressful, and this is even the case among half of those who say they have been handling the responsibility very well- one in six (17%) of caregivers fit into the ‘high stress group’ (a rating of 4), and this group is more likely to include women– the most significant predictor (or indicator) of care-giving stress is the lack of choice in taking on this responsibility.

We know that we are going to have to adjust to some financial and some health challenges as a result of our care-giving
Caregivers also report significant or some difficulties in terms of their finances (54%) and physical health (50%)

We know that we will not entertain the concept of institutional care for our loved one
While many caregivers could use help in caring for family members, few (9%) believe their family member would be better cared for in an institutional setting

We know that our jobs and careers are going to be affected when we become caregivers’ that we will decide that we have to quit, retire early or make serious changes to the pre-care-giving conditions of our jobs
More than one in four indicate their employment situation has been affected by their care-giving responsibilities, either in terms of quitting/retiring early (9%) or having had to make other changes in their work situation (e.g. schedules, role) (18%)–among those currently employed, care-giving has been disruptive to their work, either to a significant (19%) or some (33%) degree

More than four in ten (42%) believe it would be very helpful to receive flexible work hours (42%), while an equal proportion express similar interest in short term job and income protection through the federal government Employment Insurance (EI) program (42%). One in five (21%) feel this would not be helpful to them, while another 11 percent say it would not apply to them because of self-employment or because of other reasons. By comparison, fewer than one in five (18%) see a significant benefit in having access to a leave of absence without pay, likely because they could not manage without their employment income.

CONCLUSION:

Care-Giving is stressful and impacts health and lifestyle significantly – Have you planned for when you or a loved one are in need of Long Term Care?

Data source: National Profile of National Profile of Family Caregivers in Canada – 2002: Final Report, Statistics Canada, Health Canada