The Stages & Steps to Picking a Dementia Home

by Joy Birch, Chief Operating Officer, Highview Residences

The hope for this article is to provide you with 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, every person is different and so your journey will 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:

1. Discovery – Info Gathering
2. Financial Review
3. Home Visits
4. The Waiting List
5. Saying Yes and Moving Day

Stage 1 – Discovery and Information Gathering

This stage can be longer depending upon how much time there is between diagnosis and decision-day. Sometimes families begin to look at homes as soon as there is a diagnosis of dementia; other times, for all kinds of reasons – it is an urgent situation and a solution is needed – right now (more about that urgent solution later). The goal of this stage is to learn the terminology, identify what matters to your loved one and to you, the benefits and features of different homes as well as the differences in Ontario between public (long term care) and private (retirement homes). Depending upon how much time you have, 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?:

1. ___________________________
2. ___________________________
3. ___________________________
4. ___________________________
5. ___________________________

Don’t forget to search for Reviews: 

Google Reviews can be left by anyone, and often include a star-rating as well as comments. Try to look at trends or themes, and the overall rating – as opposed to getting stuck on one or two reviews that were not-positive (there is always the chance of outliers).

Indeed is a website for people who are looking for a job – but they also have a Reviews section for employers. You can easily access and read the Reviews posted by current and past employees: this will give you an idea of what the staff that will be caring for your loved one, have to say about the home.

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: ask them some basic questions about what home,  were they happy with the care, and if they have any advice? It would be good to ask them: “what was really important to you when you were looking?” Geography is also important – is the home conveniently located on your usual-routes, so that it is easier for a spouse / family / friends to visit more often?

1. List of homes
2. Any advice?
3. 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 would recommend a home that cares for people who have dementia?

D) Home amenities and design:

Let’s take a minute and think about the key things you’d like a home for your loved one 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?

Stage 2 – Financial Review: 

It is important to have a good understanding of the costs for monthly fees, as this may determine which type of home is the best choice for your loved one: private home, which is called a Retirement Home in Ontario (no government subsidy and all fees are paid for by the Person) or Long Term Care (“LTC”: government funded, fixed fees).  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. As an example, some families will use a retirement home as a “gap strategy” – and determine there is the financial capacity for x-years, and by then their loved one may be first on the waiting list for a LTC bed. It is recommended to ask all homes you’re considering, “what services are included in the monthly fees, and what do we need to pay extra”. It is also good to ask:  “if at some point, my loved one needed full-care (they’re in a wheelchair and you’re helping with feeding, dressing, bathing and continence) – what are the fees then”?

* 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 the answer above regarding financial capacity and the budget, you now can look at private retirement homes or public (LTC 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 contact them to book a tour. Prepare for and attend the tours with a specific list of questions that you will ask every home, and write down the answers. Oftentimes there is a lot of information shared at these tours and it can be overwhelming. Take notes and 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. Most importantly, when you walk into a Home – stop for a moment, breathe, 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:

1. _______________________________________________________
2. _______________________________________________________
3. _______________________________________________________
4. _______________________________________________________
5. _______________________________________________________

Stage 4 – The Waiting List

Most retirement homes that have specialized care for people with dementia. The recommendation is to ask how long the list is; is there a cost to go on the list; what is the process and timing for when a room is offered; what happens if you decline the room when offered? It is a good strategy to go on the waiting list for your top 3 homes and see which one comes up first. 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.

If you’ve chosen LTC then an application and referral needs to be completed with the LHIN/Home Community Care Coordinator. They will help guide you in how many homes to choose and hopefully be able to let you know approximately how long the waiting list will take.

How do I know when it’s time – and What if it’s Urgent?

This is such a difficult decision and I see our families struggle with it every day. Of course, your loved one wants to stay at home: we all would! However, typically their ability to make decisions and weigh-out information is deeply impacted by their memory loss. That’s when the spouse or family need to step-in and make these decisions for their loved one. Take a look at the article “4 signs it’s time to make a move” that helps to identify when it’s time to make a decision and take action.

Sometimes, despite the best-planning, the situation changes and you have an urgent need for a home for your loved one: it could be a change in their health due to a fall or safety and/or that their care partner is no longer available for a host of reasons. This is when it gets tricky because a room may not be available at the time that things are changing and you need it! Here are some suggestions:

• If you are considering retirement home / dementia / memory care, contact all the homes on your list – and let them know you have an urgent need for a room. We all want to help, and will work with you to see if there is a solution.
• If you are on the list for long-term-care, then contact your Caseworker for the Home Community Care and let them know that things are urgent. They will guide you through the selection of homes for a urgent/crisis need
• Again, sometimes, families on an LTC list will consider retirement homes, because the waiting list is shorter and the urgent need can be met – until – an LTC room is offered.

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 too late: their loved one 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 loved one 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 your loved one 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.

This article really is an overview of the things to consider – and there will always be more questions, specific to your situation and your loved one. We are here to help. You will find many resource articles on our website and we are just an email or call away (contact information is below).

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 conversations with 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 has two homes in London and two homes in Kitchener. 

Highview Residences is a specialized care home for people with dementia. This secure home is purpose-built with a unique design that is just like your home only bigger: private bedroom and bathroom, small dining room, walking gardens and truly person-centred care, supports our Residents to the end of life: Each Moment | By Design | With Love.

Highview Residences London
Hayley Gignac, General Manager
gmlondon@highviewres.com
p: (519) 472-8882 ext 201

Highview Residences KW
Katlynne Elgie, General Manager
gmkw@highviewres.com
p: (519) 893-2374 ext 301