Saying No to More: An Introduction to Older Adult Hoarding Disorder (HD)

By C.A. Bryson

This blog post is an introduction to Hoarding Disorder (HD) in older adults. The information discussed below is what I could glean from the free online workshop presented by Dr. Catherine Ayers, sponsored by Right at Home and hosted by the American Society on Aging. (See Resources below for details. The workshops are free if hosted by Right at Home or Home Instead but you will need to register with ASA. You do not have to be a member.) The workshop took place on May 24, 2023.

First, here is a definition of Hoarding Disorder (see Resources below for links to more information):

‘Hoarding Disorder (HD) is a mental health disorder where people have difficulty getting rid of possessions that are no longer useful, and efforts to get rid of the items and not acquire new items causes distress.’

In short, hoarding is the disease of MORE. It reflects our materialistic, consumeristic society, only in the extreme. No doubt you may have watched reality TV shows on hoarding in the past. Such shows, from my experience, can be distressing to watch. Many things in life in moderation are good: food, wine, certain meditations, and sleep. But all can be taken to excess—and that includes the illness of hoarding, which is now recognized by the DSM-5 (manual used by mental health professionals in order to diagnose patients). I’m even a bit guilty of clutter myself, or used to be. Awareness is half the battle. See the Resources at the end of this post if you or someone you know needs help with this common problem.

Of course, we all love to shop, or most of us do. The allure of online shopping websites such as Amazon can be hard to resist, because they are so easy (just click) and so convenient. However, someone who suffers from Hoarding Disorder causes both themselves and others significant distress. Also, someone with the illness will cause themselves impairment (social, occupational, etc.).

Hoarding Disorder is significant in the sense that the person substantially compromises their living area, and it is excessive and not attributable to another condition such as schizophrenia or dementia.

Here are some quick facts on HD (Stats U.S.-based):

• 68% of diagnoses occur before age 20 (late onset is rare)
• Course of illness tends to be chronic
• Largely genetic
• Individuals with HD tend to be creative people (strong aesthetic sense)
• Tend to have executive functioning problems.
• Occurs most often in women
• Associated with ACEs (Adverse Childhood Experiences)
• Social isolation is common
• Items hoarded are often of low-value (newspaper, clothing, books, garbage, animals. Note: I am not saying animals are of low-value, I’m only saying factually.)
• There is a risk of mobility hazards, blocked exits (difficult for First Responders to gain entrance)
• In most cases of HD (76%) there is no intervention

See ‘Hoarding Rating Scale’ in Resources below for assessment tool

Some facts on treatment:

• Full/partial cleaning distressing but sometimes necessary
• Need to teach executive functioning skills (organization, using a calendar, OHIO-Only Handle It Once)
• Need to learn to develop new habits
• Treatment works in conjunction with caregivers and families
• This is a psychiatric disorder that needs treatment
• Be patient!

I hope you have found this post helpful. There is hope.

Resources

‘Stuff: Compulsive Hoarding and the Meaning of Things’ by Randy O. Frost and Gail Steketee (2010), Available free of charge as an e-book from North Vancouver City Library.

Hoarding Center

Home

American Society on Aging

https://www.asaging.org

HRS (Hoarding Rating Scale)

Clinical Assessment

Clutterers Anonymous

Clutterers Anonymous℠

Good luck! Bonne chance! I will be back in August, 2023 (taking next week off for research).

CAB 2023

The Art of Regaining Lost Gratitude

By C.A. Bryson

No doubt you’ve heard a lot over the years about the importance of gratitude for health and well-being. Worldwide expert on gratitude Robert Emmons wrote a great book on the subject:

‘Thanks! How the New Science of Gratitude Can Make You Happier’ (2008)

Mind you, since then, the world has undergone a seismic shift. I might mention the COVID-19 pandemic, the Great Recession of 2009, and climate change. So, I suppose it is entirely possible that for some, including yours truly, genuine feelings of gratitude are hard to come by.

According to scientific research, whether or not you feel grateful is strongly determined by your genes (I mean your ‘genes’, not your ‘jeans’!). In one study, those with less than this identified gene showed greater ‘negativity bias’, (defined as a tendency to see the glass as perpetually ‘half-empty’.) Studies indicate that the presence of the ‘less grateful’ gene means that some people are not only less sensitive to positive events but also super-sensitive to negative life events.

I’d like to point you in the direction of the following (free) online article for you to read on this subject, about a 10-minute read:

‘Why is Gratitude So Hard for Some People?’ (See Resources below for URL)

To my way of thinking, while positive emotions such as gratitude are beautiful and wonderful to behold, if an individual by reason of his or her circumstances feels less grateful for a time, then those feelings, while negative, should be honoured for their authenticity. The individual then embarks on his or her own healing journey, which may (or may not) restore, or partially restore, feelings of genuine, authentic gratitude.

I do believe that the current state of our Earth and certain unfortunate aspects of our lives such as: difficulty finding and keeping affordable housing, feelings of lack of safety, rising food costs, and climate change—may mean that your negativity bias is more intense now than it was in the past. So, I suppose, one has to ‘work a little harder’ (as it were) to feel grateful these days. Of course, having adequate AC goes a long way towards that!

By the way, you are in luck if you are Scandinavian: they rank highest in terms of climate protection, followed by the U.K, which came in fourth.

Indeed, the world ‘out there’ deeply penetrates and colours our own internal experience (and vice-versa). I can only hope that the good work of many courageous men, women, and young people will lead to the eventual restoration of peace, health, and well-being in our communities.

Here is one more (free) article on gratitude (in hard times), again a 10-minute read.

‘What Gets in the Way of Gratitude’ an essay by Robert Emmons, November 12, 2013.

See resources below for URL.

Stay cool everyone (pets included)! Next week’s topic is hoarding. And stay tuned for an article in the September/October ‘Grapevine’ on C-PTSD. (Complex PTSD).

Resources:

‘Why is Gratitude So Hard for Some People?’ (May 10, 2018)

By Summer Allen

https://greatergood.berkeley.edu/article/item/why_is_gratitude_so_hard_for_some_people

‘What Gets in the Way of Gratitude?’

An essay by Robert Emmons (November 12, 2013)

https://greatergood.berkeley.edu/article/item/what_stops_gratitude

CAB 2023

How to Make Care Home Visits Work for You and the Care Receiver

by C.A. Bryson

The information I am about to present on making long-term care home visits a successful experience is based on my reading of the book ‘Talking to Alzheimers’ by Claudia J. Strauss. I was recommended the book by a presenter in an Alzheimer’s BC webinar. In fact, a link to their free webinars can be found below under ‘Resources.’

Ms. Strauss writes clearly and well. She seems to really know, in particular, the ‘sub-text’ behind the experience of visiting a loved one in a care home. By sub-text, I mean the very particular psychological impact of dementia on both the caregiver and the care receiver. Her insights, some of which I include below, were very helpful to me when my 90-year-old father was admitted to a care home back in February, 2023, after a long and perilous fight with COVID-19.

Naturally, the process of being admitted to a care home and surviving the first few weeks in care can be a very challenging process, for both the caregiver and the care receiver. Both parties undergo a kind of education, or enculturation process. Eventually, however, things settle down, and there is more of a comfort level during visits, for both parties. Even so, visits to care homes, at least in my experience, are never ‘easy.’

And why should they be? You have a memory of your loved one as an independent, autonomous, dynamic adult. Your loved one also has this memory, however impaired by dementia he or she may be. Plus, it is hard to understand and agree with the, at times, arbitrary and confusing protocol in care homes. And yes, the mountain of paperwork, phone calls, meetings, and emails too!

I do hope you will get something out of reading this blog post. Even just one thing. I’d like to start by sharing the following quote from Ms. Strauss’s book:

‘If things suddenly didn’t make sense to you, if it seemed there was no logic to what you should do and what you couldn’t, what people allowed you to do and what they didn’t, what things had what consequences, and what remedies might be available, you’d be searching, shaky, and off-balance too.’

Such great sensitivity Ms. Strauss has. She really gets it. Imagine, for a moment, the overwhelming grief over lost agency, lost autonomy, and above all, lost privacy. This is why the prospect of entering a care home can be so daunting, both for the caregiver and the care receiver. However, here are some suggestions for how you can make your care home visit more successful:

Things to say that help:

• “It’s nice to see you.”
• “Do you want to see what’s going on over there? Let’s check it out.” From my own experience, my father enjoys going on little impromptu ‘trips’ around the care home. It breaks up the monotony and allows for some pleasant distraction. Besides, both my father and I like to travel, so why not? Invariably, there’s always something happening around the care home that the care receiver can notice and observe, and again, the distraction is really helpful, from the pain of, first of all, having dementia and, second of all, being in care.

Ms. Strauss advises:

‘Do honor them for their knowledge, their wisdom, and their decisions. Always offer choice and options. For example, if there are two items on the menu for lunch (and there usually are), which would they prefer? A tuna sandwich or macaroni and cheese? Would they like to be served tea or coffee with their meal? I once read an interesting article about the people who communicate to the perpetrators during hijacks. The expert said that one thing he does is get the perpetrators to use China plates instead of paper. Why? Because China plates break. It emphasizes that the captives are real people, with actual feelings. I’ve never forgotten that article, and it has since been almost 40 years since I read it.

And older people are so interesting; and they do have wisdom, in spite of the dementia. My father, for example, shared that he would not write another poem because he believes he has written enough of them. So, he expressed a decision, a choice. And good for him. In general, avoid being patronizing or condescending. Yes, he or she may have dementia, but that is not a reason to talk to them as if they were children in a third-grade classroom. Treat them as you would want to be treated, they will respond to it.

Please note that if you choose to bring photo albums (talking photo albums are great, I made one for my father with my siblings a few years ago), it might help if you added captions or labels, so if the care receiver forgot who is in the photo, then they would know, and it wouldn’t put them on the spot. Another suggestion: take something that you know fits in with an old interest of theirs (check out the memory box suggestion in the Alzheimer BC webinar (free) on the topic of activities to do together (see link below).

Act as if you were interested in that particular thing too. For example, my sister has purchased some books on fly-fishing for my father, who was a fisher as a young person, for reading aloud.

Sometimes visits can be lengthy (up to 2 hours), but it is ok if you can only spare 10 minutes. Don’t not go because you only have a short amount of time available. Even a short visit is better than no visit at all. The main thing is to connect, and to provide that vital one-to-one that is so often overlooked in care homes because the staff are so busy.

If you or a sibling prefers not to visit (or only visit occasionally), respect their decision. Perhaps they have something else that they would like to do, like take care of finances or book an appointment.

A final quote:

‘In addition to making sure they understand that your spending time with them is not a matter of obligation (because you are not a staff member), and that you are there because you want to be and because you enjoy their company, it is important that they believe they deserve to spend time with you and are giving something back.’

Personally, I love Ms. Strauss’s book, because of her honesty and her tremendous sense of respect for older adults. As a child, my father was so often away or at work. Now is the time I get to spend with him and get to know him, adult to adult. I am indeed so grateful for every time I see him. He’s a bit of a ‘Yoda’ in fact. Like in the movie Star Wars. I’m not sure I exactly enjoy going to a care home—perhaps I have unpleasant memories of institutions in the past—but seeing my father is an honour and a privilege.

Thanks for taking the time to read this post. Next week is another one of my ‘diamond in the rough’ posts. In particular, I’ll be talking about gratitude, not so much having it, but what to do when you don’t feel grateful. And other issues related to that as well.

I hope you have a good week.

CAB 2023

Resources

Strauss, C. (2001). Talking to Alzheimer’s: Simple Ways to Connect When You Visit (New Harbinger) (By the way, a short book and not a difficult read.)

Available on Amazon, or check out if the library has it, either as a print copy or as an e-book.

Alzheimer British Columbia Free Webinars:

Under Content, See Webinars, then the webinar entitled: ‘Activities to Do With Someone Living with Dementia’ (50 minutes approx.). If you watch it, you will learn about how to make ‘memory boxes.’

https://alzheimer.ca/bc/en/help-support/programs-services/webinars