The hope for this article is to provide you some tools, resources and thought-starters to help support your search for a Home for your loved one who has dementia. Feedback is welcome! Let us know how you’re finding it works for you. Download, save it, print it, forward it – we hope it’s helpful.
There are five stages involved in choosing and moving your loved one who has dementia to a home, however, everyone is different and so your journey may be different also! Through years of working with families as they navigate this part of the journey we have generally found these are the Stages.
- Discovery – Info gathering
- Financial Review
- Home Visits
- Saying Yes and Moving Day
- Saying Yes and Moving Day 5
Stage 1 – Discovery and Information Gathering
This stage can be longer depending upon how much time there is between diagnosis and decision-day. The goal of this stage is to learn the terminology, benefits and features of different homes. Depending upon how much time you have, then you may want to make the following lists to organize your Discovery:
A) Online research – input words like: “dementia + home + city name [the city you would like the home to be in] and see what homes come up – that’s a good place to start. Note the list and start to look at each home. What are the top three (or five) homes listed?:
B) Word-of-Mouth and Conversations
Do you know anyone who has recently walked this path of caring for someone who has dementia? If yes, make a list and find a way to reach out to them and ask them some basic questions about what home they were happy with and if they have any advice? It would be good to ask them: “what was really important to you when you were looking?”
- List of homes
- Any advice?
- What was important?
C) Trusted sources
Who would be on your list of trusted source for information and would you be able to ask them if they can suggest or recommend a home for people with dementia?
|Name:||Phone #:||Their Suggestion:|
|Minister / Priest|
|Hospital Discharge Planner|
D) Home amenities and design:
Let’s take a minute and think about the key things you’d like a home for your Person to have or to do. What is non-negotiable and what is nice-to-have? Here are some ideas to get you started – try using a highlighter for must-have, a checkmark ( ✓) for nice-to-have and cross out the ones that don’t apply. Are there any to add that aren’t on this list?
|Private room||Private bathroom||Government subsidized or Private Home
|Continuum of care or dementia specific home||Accessible gardens|
|On City-bus route
|A la carte care services or
All inclusive care services
|Ability to care for all stages of dementia|
|Palliative care (end of life)
|Delicious home-cooked meals
|Dementia specific activities|
|Nursing staff on 24/7
|Visiting hours and places for family to visit / to dine||Can outside care be brought in|
|In-House Physician||Secure – is the home fully safe||Type of bathing / personal care services|
|Laundry services||Pets allowed|
Stage 2 – Financial Review:
It will be important to have a good understanding of what the budget is for monthly fees as this may determine whether a private home (no government subsidy and all fees are paid for by the Person) or Long Term Care (“LTC”: government funded, fixed fees) will be the right choice for your loved one. This is also why it’s helpful to understand the low-and-high fees for a home that is not all-inclusive, to be able to budget accurately. Some families will determine there is the financial capacity to do private care for (example) 2-years and by then their Person may be first on the waiting list for a LTC bed. You could consider asking about what services are included in the monthly fees*
|Personal care||Continence care||Medication management|
|Laundry||Snacks and meals||Therapeutic or specialty diets|
|Dementia specific activities||Housekeeping|
* if not included in the monthly fees, then the best-budget is one where you include the cost of each of these items, in the event that your Person needs them, they’re already in the budget.
Stage 3 – Shortlist and Home-Visits
Depending upon finances, you now can look at private or public homes. Based upon your initial research and review of websites, make a short-list of the top five homes you’d like to visit and call / email them to book a tour. Go to that tour with a solid list of questions that you will ask each home, and write down the answers. Oftentimes there is a lot of information shared at these tours and it can be overwhelming. Taking notes and even bring another person with you to help process the information afterwards. Be sure to ask about the length of waiting list and all the previously mentioned amenities. But mostly, when you walk into a Home – stop for a moment, breath, and let it register with you: “how does his home feel to me?” Many families will say “I knew when we first walked in the door”.
Top 5 Homes to tour & date of tour:
Stage 4 – The Waiting List
Most specialized homes for people with dementia as well as LTC will have a waiting list. The recommendation is to ask how long the list is; is there a cost to go on the list; and what is the process and timing for when a room is offered? It is a good strategy to go on the waiting list for your top-3 homes and see which one comes up first. If you’ve chosen LTC then your LHIN Coordinator can help guide you in how many homes to choose. These homes will likely stay in-touch with you through the waiting time and it’s good to keep them updated on how your Person is doing.
Stage 5 – Saying Yes and Moving Day
It may seem like it takes a while, but the day will come when you’re offered a room. Now you have to decide: accept the room or go to the bottom of the list again. This is a tough decision for most families as they prefer to have their loved one at home, however, the strong recommendation is to say “yes”. So many times, we have families on the list who say “not yet” and then unfortunately the time comes and it’s then too-late: their Person has changed, had a fall, or becomes palliative.
So you say “yes” – what happens next? There will be an assessment to ensure that the care needs of your Person can be met; an admission package to complete so that the home knows as much as possible about your Person before they move in and a moving-date is set. The moving process alone can feel daunting, but there are transition services out there whose specific job it is to help make the move as easy as possible for the Person and for the family: they are worth the time and money.
Many families will say “we never could have imagined how much better it could be” and that they wish they’d made the decision sooner. The resident will generally adjust to their new home sooner, when they move earlier in the progression of their disease and then they are truly getting the level of care that is most-needed, in a safe and secure environment.
Joy Birch is the Chief Operating Officer of Highview Residences: a specialized care home for people with dementia. Joy draws on personal experiences, research and (mostly) the stories of the families she meets every day, when helping them navigate the process of finding a home. For a printable pdf version of this article, click here.
Highview Residences will open their second home on the Kitchener- Waterloo site, October 28, 2019.