Options for Care and New Living Arrangements
Do you have a plan for when the person living with dementia’s abilities change and independence decreases? The ability of a person with dementia to remain at home largely depends on the support available from family/friends/community services and financial resources. As a caregiver, you need to openly and honestly ask yourself some important questions when deciding whether it is time for the person to consider increasing home help or an alternative living arrangement:
- What is the effect of caring for the person at home on my life?
- Do I have the physical and emotional resources to meet the person’s present and growing future care needs at home?
- Do I feel stressed and overwhelmed with my caregiving responsibilities?
- What are other available sources of support (e.g., family, friends and community
- support services)? Have we taken full advantage of them?
- Does the person accept receiving outside help at home?
- Is the outside help enough to meet the person’s present and future needs?
- What is the financial cost of arranging for adequate home care and supervision?
- Overall, does living at home compromise the physical and emotional health of the person with dementia or mine as a caregiver?
From Home to Retirement home: A Guide for Caregivers of Persons with
Dementia (RGPEO, 2009) gives relevant and practical advice on when and how to consider moving however note that is was made in 2009 and many resources and legislation are out of date.
Care Options to Explore Include
See the downloadable local resources document at the top of this page for contact information.
- CCAC: Contact your local CCAC for personal support services available in the home (such as bathing, dressing), Adult Day Program referral, ALS program (Assisted Living Services)
- Adult Day Programs are part-of-the-day supervised programming in a group setting for dependent adults, such as the frail elderly, individuals with Alzheimer’s, or individuals with disabilities. Services may include leisure activities, meals and personal care while giving caregivers some respite. All referrals are managed by the CCAC. Each program has a different cost/day and may or may not include transportation
- Assisted Living Services: Short Stay Care
This is a brief stay for the person living with dementia in private retirement home or a long term care home while the caregiver is on vacation or taking a break. Convalescent care may be available while you are recovering from an illness or surgery. There is a cost per day for these services and services are provided either in a private retirement home (more costly) or in a long term care home (less costly but all applications must be done in advance and are managed by the CCAC,
- Private home support services
Mutliple private options exist to support people living with dementia and their families.
- Retirement Homes:
These are private residences in a condo-like setting that typically offer a set of six main services in a more or less home-like environment: accommodation, meals, laundry, housekeeping, activity programs, and some level of personal/health care services (e.g., help with bathing and other personal care tasks, access to professional nursing, medication supervision and administration, on-site medical clinics, etc.).In many regions of Canada, including Ontario, retirement residences are not regulated or funded by the government. So, there are major differences in their sizes, prices, policies, amenities, programs and services.Some residences may not have the staff and services necessary to meet the needs of persons with dementia depending on their person’s stage and particularly, responding appropriately behaviors. Others may have “assisted living” programs or “dementia care” units that can better accommodate the needs of persons with dementia and other disabilities. These higher levels of care, if available, are usually offered for an extra fee.Generally, most retirement residences prefer to admit older persons who are relatively independent for personal care (e.g., toileting, feeding, dressing, bathing, and walking). In fact, most require a medical report of the person’s health and care needs before accepting an application. Some may not accept persons who have a diagnosis of dementia.
- Residential Services Homes (Domiciliary hostels)
These are private or non-profit residences that provide long-term housing to vulnerable adults who require some supervision and services to maintain their independent living. Services generally include shared accomodation, meals, medication management, housekeeping and personal laundry, social and/or recreational activities. Residents are typically living with a psychiatric, developmental or physical illness and or disability. These homes offer a residential living environment that is safe and supportive for all residents but many are not equipped to manage people with dementia though this may be an option for persons with dementia at an early stage or with other mental and physical health needs unable to afford a private retirement home and that do not require 24 hour nursing care in a long term care facility.
- Long-Term Care Home
Long Term Care (LTC) Homes, often called nursing homes, are residential facilities that provide care to individuals who are unable to live independently in the community as they require the availability of 24-hour nursing care and supervision within a secure setting. In general, LTC Homes provide typically higher levels of personal care and support than can be provided in the home or offered by a Retirement Home or Residential Services Home.The Champlain Community Care Access Centre (CCAC) and their Care Coordinators are your single point of access to information about and to apply for admission to Long-Term Care Homes (LTCH). You cannot apply directly to the LTCH.Your CCAC Care Coordinator can:
- Provide information about LTCHs;
- Provide information about financial options, if required;
- Carry out an assessment at your home or in hospital and determine your eligibility;
- Help you with the application forms and coordinate the application process tofacilitate access to LTC;
- Provide information on alternatives to LTCHs, such as supportive/assistive housing, retirement homes and community home supports (Assisted Living Services for High Risk Seniors);
- Empower you or your decision-makers with the information you need to make an informed decision on a LTCH that suits your needs and interests;
- Place you, if necessary, on the waiting lists of the LTCHs you select;
- Offer you a bed in a chosen LTCH when one becomes available.
Information about the application and admission process to Long-Term Care Homes, costs and list of facilities is provided by the Community Care Access Centre. http://www.champlainhealthline.ca/listServices.aspx?id=10665
Cost for Accommodation in long term care http://www.champlainhealthline.ca/healthlibrary_docs/LTC_Rates_2015.pdf
Veterans may be eligible for priority access to Long-Term Care beds and for subsidies in other services. http://www.veterans.gc.ca/eng/
Getting a professional opinion about care needs and services
It is not uncommon for family members to have different opinions regarding the person with dementia’s caregiving needs and housing preferences. It is always important to consider the person with dementia’s previous values and beliefs, particularly regarding tolerance to risk, particularly when living alone.
What would they have chosen 10 years ago for themselves at this stage of their disease?
Speak to your loved one’s family doctor or other health care professional for advice and a referral to a specialized service if looking to plan for a person’s current and future care needs.
- If the person with dementia is are experiencing a number of different physical health issues, you may want to speak to your family doctor about being referred to a local service to have a geriatric assessment – this assessment is for people aged 65 and over who have a variety of concerns such as:
- Recent changes in physical, mental or functional abilities, changes in memory and/or mood.
- Major changes in support needs, caregiver stress and future planning.
- Safety concerns - physical, psychological, social, environmental.
- Sudden increase in the use of health care services over the last 6 months.
- If you the person with dementia is experiencing a change in mood or if the behavior is becoming challenging and affecting care, you may want to speak to your family doctor about being referred to specialized behavioral support services. These services generally include:
- Global assessment of mood, cognition, function, safety and behavior
- Non-pharmacological recommendations (such as education, referral to services, care strategies) and, as needed, pharmacological recommendations to optimize function, plan for care needs and decrease caregiver burden.
Retirement Homes – Long Term Care Homes
When exploring retirement residences it is important to do your research: enclosed is a checklist to support you in comparing amenities.
Many caregivers and persons with dementia opt to consult a free advisory referral service to facilitate touring and choosing a retirement residence. Click for a list in Champlain region.
All retirement homes are required to have a complaints process in place. If you have a complaint about a retirement home, contacting the home may be an effective way to have your concerns addressed. If you believe a home is not following the requirements of the Retirement Homes Act, 2010 (the Act), or its regulations, you may also file a complaint with the Retirement Homes Regulatory Authority (RHRA). The RHRA is an independent, self-funded, not-for-profit corporation established by the Ontario government under the Retirement Homes Act, 2010.
Long Term Care Homes:
The Long-Term Care Homes Virtual Video Tours are intended to give you an idea of the options available in the Champlain region. They are not meant to replace actual touring of the homes, but may help you decide which ones to visit in person. http://www.champlainhealthline.ca/libraryContent.aspx?id=20454
There are wait lists to be admitted to a long term care home, in the meantime, you should expand the services at home. See link for updated wait lists in Champlain
Prepare for the move to long term care by engaging in online learning that will assist you to prepare for the move, to plan the moving day, and to adjust to the move.