Tag Archives: dementia

Rural Healthcare: Helping Caregivers and Persons Living with Dementia

Access to quality rural healthcare, resources, education, and support is a growing challenge in the US and around the globe.  What does this mean for the growing numbers of persons living with dementia and their families who are caring for them?  How does this affect the quality of care being offered by nursing homes and other care providers?

There are no easy solutions as options are dwindling for many rural communities.  Closures of hospitals mean less health care professionals to diagnose Alzheimer’s and other forms of dementia.  Community education for families, often a service offered by hospitals and clinics, is then not available.  When the infrastructure of healthcare, private providers and community-based services is compromised, access to much-needed support dwindles quickly.

I recently had the honor to work with the University of Waterloo School of Pharmacy who collaborates with the Gateway Centre of Excellence in Rural Health, both in Ontario Canada.  The University will be training its pharmacy students using our Dementia Live® and Compassionate Touch® programs and beyond that, they are will be working with Gateway to reach rural communities with desperately needed dementia education and training for families and professionals.

Reaching the indigenous people of the province will be part of this project.  In the 2016 census, the indigenous or Aboriginal peoples in Canada totaled 1,673,785 people or 4.9% of the national population.   Many of the indigenous peoples live in rural areas where access to services is limited.   Bringing dementia awareness and education to rural areas will help to spur collaboration amongst various organizations who need to work together to serve their aging populations and families.

Limited access to rural healthcare is a growing initiative in the US and other countries as the aging population swells.  Because family caregivers make up the vast majority of those caring for persons with dementia, providing quality training, support and access to resources is a top initiative for healthcare, long term care services providers and community-based organizations in urban areas who can collaborate with local services, faith communities and others who have a direct reach to many of the families who are struggling.

Finding local champions who see the value of collaboration, education and support services is ultimately the best measure of success, as the communities themselves embrace the challenges and solutions for their aging communities and the unique needs of persons living with dementia and their families.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  

 

How Do You Score in Empowering Your Caregivers?

From the conversations I have every single day with our partners, I’m guessing most of you would give yourselves an adequate score at best.  And perhaps this is on a good day.  “Empowering Your Caregivers” – some of you might just be asking what exactly I mean by empowering caregivers.

Our old friend, Merriam-Webster says that Empower is to promote the self-actualization or influence of or to enable.  An example: the women’s movement has been inspiring and empowering women.  

What makes the challenge so difficult when we talk about empowering our caregivers, especially those who are serving persons living with dementia?  This is where it gets fuzzy, right?  We have massive numbers of persons living dementia and not enough caregivers to go around, so those that are doing so by and large are stretched – to the max.  And like all professions, when demand outweighs supply,  people look for other jobs if they are not satisfied.  Thus the reason for a very high level of turnover among caregivers, especially those who care for persons with dementia.

Certainly, there are other factors that are equally as important such as pay, benefits and the stress that comes with caring for another person with cognitive decline.

Why then, are some providers able to outperform others when it comes to staff turnover, more satisfied employees AND happier residents, clients or patients?  They are as vulnerable as anyone else is to staffing shortages, wage and benefit offerings and the job itself is just as challenging no matter where one works.  Right?

Maybe that’s not always true.  My discussions consistently come down to the winners in this game invest in their caregivers.  They invest their resources, time and attention in Empowering their Caregivers.  The winners stand out with simple but strongly held core beliefs:  that caregivers MUST be:

  • Educated
  • Have the Tools with which to do their job well
  • Listened to
  • Rewarded

It’s funny, that when someone is educated or trained to do their job well, they then have the tools available.  If they are listened to, they feel a part of the team, and low and behold, when they are rewarded, they feel like what they do everyday matters.

And what our caregivers do every day DOES matter – it matters to your resident, to their families, to the culture of your business and ultimately it matters in how others view who you are as a provider of services.

Let’s not underestimate the power of empowering your caregivers.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and the creator of the Dementia Live® Sensitivity Awareness Training Program.  She is a passionate advocate for older adults and those who serve them.  

The Depression-Dementia Link and What Caregivers Need to Know

Far too often I talk to family caregivers who are concerned about their loved one’s cognitive decline.  It is not uncommon to hear such explanations go something like this:

Mom just has not been on top of things lately.  She seems scattered.  Her house is messier than normal, and she can’t seem to get things in order.  What concerns me most is that it doesn’t seem to bother her, and that is so unlike her.”

Dad was always such a strong decision maker, and now he can’t decide something simple, like where to go for dinner.  It seems like he’s stuck in limbo with just about everything when it comes to making choices – not just about the big stuff but everyday things”.

My wife has no interest in meeting with friends, going to church, or even going out for a stroll.  This is so unlike her.  I know she is blue, but it seems to be affecting her memory.  The other day she asked me the same questions many times.”

All of these scenarios certainly look like potential dementia-like symptoms.  Being disorganized, not able to make decisions and social isolation are certainly cause for concern, especially with older adults.  What often goes unnoticed is the possibility of depression.

What is Pseudodementia?

There is a link between depression and dementia.  It actually has a name – it’s called pseudodementia. Pseudodementia is a term—not an official diagnosis— that is sometimes used to describe symptoms that resemble dementia but are actually due to other conditions, most commonly depression. Unlike true dementia, depression that is caused by depression is often reversible.

Why is the Depression-Dementia Link often Overlooked?

My non-clinical opinion (but based on years of working with family caregivers and my own caregiving story) is that far too often families and even primary caregivers are not tuned into their loved one’s risks for depression.  Older adults who have at least one chronic health condition and 50% have two or more.  Depression is more common in people who have illnesses that limit their normal daily activities.

Loss and grief are common denominators in the elderly, especially those who are living alone, lost loved ones, especially spouses, and because of illness have lost their independence.  If, for instance, a parent has recently lost a spouse, moved from a life-long home, been diagnosed with a significant illness, can no longer drive or has to have help with everyday tasks – ALL of these are precursors to the possibility of that person’s loss and grief lead to depression.

The domino effects that occur when illness strikes, depression sets in and cognitive decline is recognized are often confusing and shocking for families.

It’s very important that loved ones look at life circumstances, and begin to make notes of lifestyle changes (such as not wanting to go out), lack of ability to make decisions, unkempt dress or cluttered living conditions.  The importance of noting these things will make all the difference when visiting the doctor.  Since we have limited time to spend with busy health care professionals, it is more important than ever that older adults have a health care advocate (preferably a family member) accompany their loved ones’ to doctor visits.

More often than not depression is not going to be diagnosed during a doctor visit unless their advocate is there to share what has been observed.  If it is too uncomfortable to do this with a loved one present, then ask for a consultation visit or at the least leave a note that clearly outlines your concerns so the doctor can read this before visiting with your loved one.

Dementia caused by depression is often reversible by treating the depression.  Before loved ones jump to conclusions that their loved one has Alzheimer’s disease or another form of dementia, they should step back and make comprehensive observations, share this with their healthcare professional and see if treating depression first will reverse what looks like symptoms of dementia.

As the holidays’ approach and families come together, this is an important reminder to observe your loved one’s emotional health just as much, if not more than what is going on physically.  Be willing to talk to others and what they have observed, and even with your loved one should be on your to-do list.

And lastly, keep in mind that the oldest generation did not grow up in the era of “happy pills” so, talking about depression and the possibility of taking a medication to treat depression can often be considered an “off the table” topic.  I’ve found that approaching with empathy and kindness and being prepared to explain that depression is treatable –  just like high blood pressure is helpful.  Above, as the saying goes, use your finest kid gloves.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  A longtime family caregiver herself, Pam has guided thousands of care partners and their loved ones with complex  challenges.

 

 

 

What Would Life be Like if You were a Resident for a Day?

What would life be like if you stepped into the world of a resident in long-term care?   Perhaps it would awaken us to the fact that they see things much differently than we do.  Maybe it would make us understand their experiences, challenges, and thought processes.  Do you think that we might be more empathetic?  Gosh, I hope so.

Let’s look at what being a resident for a day might teach us. 

Waking up to a room that is not “mine” is frightening.  It reminds me that I’m not in my home anymore where I felt secure and loved.

No one ever referred to me as honey.  I don’t like to be called honey.  I have a name – one that I’ve had all my life.  Please call me by my REAL name!

Those loud noises scare the daylights out of me!  I’ve never liked sirens, and I feel like that’s all I hear – ALL day long.

Contrary to what you may believe, getting naked and having someone help me bathe myself is not normal.  I feel like I’m on display.  Yes, it makes me anxious and this is sometimes why I just don’t want to take a shower!

For that matter,  having someone change my diapers is about 10 times more embarrassing as getting naked.

Eating with people I don’t know is not my idea of enjoying a meal.  Where’s my glass of wine?  And goodness sakes, I’ve never liked peas and not about to start liking them now.  So please, dear, don’t ask me to finish up my vegetables.  It’s not going to happen.

Don’t take this personally, but all these activities won’t make me less bored.  What would make me less bored is being able to do something I actually enjoy – like tending a garden or some ballroom dancing or designing bridges as I did in my career.   Now, these are things I still LOVE to do.  I don’t like playing bingo.  I’ll never like playing bingo.  Not EVER.

Now that you see the world through a different lens, can you see what being a resident for a day might teach us?

It will help us understand the feelings of emptiness and loss they are experiencing.

It might give us a perspective of dignity and how important that is to what makes us feel whole and complete.

Perhaps it will open our eyes to the fact that, despite their frailty, illness or state of mind, that they have interests, and it might not be anything like someone else’s and that’s okay.  We just need to tap into what it is that makes them smile.

Maybe you will see that feeling secure and respected by their care partners can actually bring a new relationship that is meaningful for both of you.

Being a resident for a day may not be easy, but it will certainly open our eyes to empathy, understanding and new perspectives that will improve the care we deliver.

Pam Brandon is President and Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  She is the creator of the Dementia Live® simulation and awareness program and co-directed the development of the Compassionate Touch® skilled touch program, both being implemented by care provider internationally.