Dementia Care Planning

Planning during the early stages of dementia

Every family is different, with a different dynamic. Begin by carefully, wisely discussing how you are going to care for the loved one with dementia: who is going to be in charge, and who is responsible for individual tasks. In the great majority of cases, that work falls on one person. If that's you, here is what you need to do during early stages of Alzheimer's or dementia:

• Get informed. Read as much as you can, talk to as many people as you need to.
• Consult a variety of authorities. Of course, you will begin with health authorities and government health services. For example, British Columbia residents will contact BC Ministry of Health Services (in Ontario you will contact the LHIN, in Alberta you would contact Alberta Health Services, etc.) Bear in mind that these resources will focus on the government services available, and may deprecate or forget services they do not advocate for. That's why it's a good idea to research on your own using other guides, like this one.
• Learn all you can about caregiving solutions near you, and how these resources can help you.
• Find support. Support groups are available in many different communities; you can find some through alzheimer.ca. Other support can be found in websites and forums like alzlive.com (recommended), Facebook groups, Meetup groups, etc. Participate as much as you can, as early as you can, learn from others, and find out which kinds of support work best for you.
• Prepare for stress, and decide on healthy ways to deal with it. Many people need spiritual help like prayer or meditation; other people work out regularly to relieve stress. These are a couple of healthy means of caring for yourself. Caregivers should prepare ahead for all the eventualities related to senile dementia: the setbacks, the stages of degeneration, and the most negative symptoms of dementia (confusion, agitation, wandering, physical outbursts, etc.) To learn more about symptoms you will face, read about stages of Alzheimer's, sundown-syndrome, memory loss and more.
• Learn all you can about caregiver benefits.

Caregiving during early dementia: three helpful services

There are a variety of services you need to investigate as soon as possible. All of these services can help spell off your personal caregiving to help you keep a balance.

Respite care should be taken advantage of as soon as you need it. This is short term help for caregivers, supported by provincial government funding in provinces across Canada. You may have heard of this only as a short term stay in a retirement home but respite care is also provided by home care providers. Taking a break or holiday from caregiving is an important means of staying physically and mentally healthy, so you can offer the best care. Look at respite care early, to fit this component into your long range dementia care plan.

Adult day care programs are available in communities across Canada, and like respite care, these are an important aide to caregivers. Of course, these kinds of programs and related services (senior centers, etc.) can help dementia patients through social activities, brain exercises and time out of the home. But they also allow caregivers time off. Learn about these programs and find out their availability near you. These should be a critical part of your family's senile dementia care plan.

Home care is available under the auspices of provincial health care services in many cases (such as the LHIN in Ontario) but you may be limited by waiting lists. Private home care services can augment other care you provide, creating your own respite program. There are many other benefits to using these services. Investigate home care near you, find out costs and learn all you can.

There are many benefits to involving yourself with, and observing professional caregivers. You will learn different approaches to care, in context, and learn from the example of others. Many professional caregivers are trained in special techniques. Learning about these will be valuable to you as you move forward. For example, you will see caregiving techniques at work, such as validation therapy, and gentle persuasion.

Considerations for middle to later stages

As time goes on, you will need to upscale care given. Respite care will be increasingly important to your care planning, as will home care services, senior centers, adult day care programs and any other resources outside the home.   

Some families who can afford it will choose to get their loved one into assisted living. Many assisted living care homes are prepared to help those in middle stages of progressive dementia. Care staff here is available 24 hours a day, and these facilities will be secured, in an environment where everyone is experienced with various stages of dementia. Find out more about what is offered in typical assisted living settings.

As your loved one's dementia progresses, memory care facilities are also suitable. To plan ahead strategically, you may want to arrange a move into a retirement home that also offers memory care help and is prepared for the later stages and contingencies of dementia. See your best long range dementia care plan below.

Preparing and planning for the later stages of dementia

Know what's coming. As they say, plan for the worst, but hope for the best. As you circulate in care homes and seniors' programs, observe those in later stages of dementia and prepare yourself to deal with your loved one in those later stages; progressive deterioration is inevitable.

Knowing your eventual need for long term care (LTC), investigate local options, as early as you can. Many provinces have waiting lists for long term care, and you can't get on a waiting list until a doctor is certain your loved one needs LTC. In the province of Ontario (as of 2017) wait times for long term beds range from approximately 75 days to over three years, depending on the facility and the region.

In long term care homes listed on Comfort Life, care offered is exceptional and state-of-the-industry. Not all long term care homes recommended to you by government services (or that are near you) will be to your liking. This is why you need to check out your options ahead of time and plan the best way of going through this process. The following looks at an ideal path to take.

The best long range dementia care plan: a holistic view
Here is a plan for navigating and thinking ahead toward late-dementia choices, from experts in the care industry. If you think ahead to the ultimate outcome of dementia (dreadful, yes, but also inevitable), you can plan care choices accordingly. You will not likely get into the LTC home you want, so have a backup plan.

We suggest that you find exceptional private memory care facilities near you, where your loved one has the greatest guarantee of receiving excellent care. Learn ahead of time what the cost will be, and budget accordingly. There will be a number of options, so choose one that best matches your budget and needs.

Ideally, you want your loved one to be in the same community (one they like or accept) for the duration. Being in a stable environment with which they become familiar will alleviate confusion and other effects related to dementia. The various kinds of care you will need should ideally be available in one situation:

• respite care during the early to middle stages of the disease
• memory care during later stages of progression
• long term care and/or palliative care during the final stages

This holistically minded plan applies to every form of senile dementia, including Alzheimer's, vascular dementia (although this can be much slower), Parkinson's, and all others.

We wish you the best possible outcome as you venture forward in making challenging decisions in the days, months and years ahead.

Sources and further resources
alz.org/../dementia-creating-a-plan.asp
alzlive.com: a Toronto-based website full of resources for caregivers of Alzheimer's patients
alzheimer.ca: offers broad information about Alzhimer's and related dementias, along with lists to local support groups and more.
healthcareathome.ca's long term care wait list: links to updated wait times for long term care beds in Ontario.