All posts by Pam Brandon

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.

 

 

 

The Family Caregiving Tsunami is Here. How are We Supporting Them?

We have a family caregiving tsunami whose tidal waves are affecting every corner of our society.  I venture to say that most communities are not prepared for the domino effects of a fast-aging population let along to provide support to their families that are scrambling to stay above water – emotionally, physically and financially.

November is National Family Caregivers Month.  Spearheaded by the Caregiver Action Network, the theme is Caregiving Around the Clock.  

As I travel abroad, I certainly see first hand that the challenges in the US are felt around the globe as this age-wave takes hold.  Public institutions are already stretched to serve current needs and despite the growth of

Let’s look at a few staggering US statistics compiled by the Family Caregiver Alliance:

  • Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • The majority of caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • Approximately 39.8 million caregivers provide care to adults (aged 18+) with a disability or illness or 16.6% of Americans. [Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management.]
  • About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

What is the Economic Impact?  

  • The value of services provided by informal caregivers has steadily increased over the last decade, with an estimated economic value of $470 billion in 2013, up from $450 billion in 2009 and $375 billion in 2007. [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
  • At $470 billion in 2013, the value of unpaid caregiving exceeded the value of paid home care and total Medicaid spending in the same year and nearly matched the value of the sales of the world’s largest company, Wal-Mart ($477 billion). [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
  • The economic value of the care provided by unpaid caregivers of those with Alzheimer’s disease or other dementias was $217.7 billion in 2014. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

The clock never stops for family caregivers, and globally the clock is ticking for public and private institutions, community organizations, faith communities and each one of us in this space to make a committment-  that in 2019 we do more to reach family caregivers, provide support services and needed resources.  They are and will remain the largest group support our aging population in the years ahead.

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

Creating a Sustainable Culture of Compassion

I have to be direct in asking – isn’t this every elder care community’s goal?  After all, we should be in the compassion business, and sustainability is the hot topic today.  Creating a sustainable culture of compassion – makes sense right?

As I write this I can see my readers head shaking.  “It would be ideal, however…….”.  And the list starts adding up quickly of all the barriers to creating a sustainable culture of compassion.

Let’s break this down a bit, starting with Creating.  To create is to bring into existence;  to bring about a course of action or behavior;  to produce through imaginative skill.   Creating should be a blend of many and in elder care, that means everyone from our residents, dining staff, front-line caregivers, housekeeping, clinical staff, administrators and right “up the line” to the CEO.  It’s not a top-down mechanical procedure.  We create things and ideas by listening to each other, churning ideas and then embracing it all with passion.

Sustainability if the ability to be maintained;  In elder care, maintaining a high level of care for each resident is critically important.  High levels of satisfaction from residents, families, and staff are benchmarks upon which our business either succeeds or not.  Sustainability takes a strong commitment from leadership and perseverance to maintain standards even when the going gets tough.

 Now we look at a Culture of Compassion.  Wow, now we’re getting to the real meat here.  Compassion is simply empathy and concern for others.  Culture is the characteristics and knowledge of a group of people.  It’s a collective whole that creates a certain environment.
Aren’t we in the compassion business?  
Most certainly we are in the compassion business and I believe most of us found our way to senior or elder care because somewhere in our life experiences we found that this caring business is pretty dog-gone important to others and ourselves.
Why, then do we struggle with creating a sustainable culture of compassion?  Are we not looking at the vision we must create as leaders?  Are we not listening enough to those who are really doing the work that makes our business?  And, goodness knows, are we forgetting to listen to the very people who live in our communities?
I believe that creating a sustainable culture of compassion is not only doable but essential.  So many good things will happen when compassion cultures are created and maintained.  It is a domino effect of great leadership, teambuilding, happy residents, staff and families.  It’s getting down to the basics of why we do what we do every single day.
To coin a phrase, Just Do It!
Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  She led the development of the Compassionate Touch® program.  She may be contacted at pam@AGEucate.com.

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.