Depression, Loneliness & Risk for Dementia*

I recently delivered a short lecture on risk for dementia resulting from depression or loneliness.  The research evidence is strong that a history of depression, and the severity of symptoms both in early and late-life depression does convey a risk.  The evidence is also strong that an association exists between one’s perceived sense of loneliness and a risk or perhaps a vulnerability for dementia.  Across studies, loneliness and/or depression is hypothesized to be either a consequence of cognitive decline and is perhaps a behavioral reaction to diminished cognition.  Or it may be that loneliness or depression compromises the neural systems essential to cognition and memory suggesting that the neural pathways underlying social behavior become less elaborated or flexible.

Clearly, we have the proverbial chicken or the egg question.  So rather than try to find absolutes I have come to think about this as a dynamic, reciprocal relationship very much in keeping with the bio-psycho-social model of social work practice.  As a social worker, I am trained to be an observer of behavior and not to think linearly.  I have developed a mental image of a series of intersecting cogs of a wheel – constantly in motion –or the continuous looping around of multiple variables that can affect a person’s life.

In this group of journal articles*, I was introduced to the concepts of socio-cognitive skills and Mild Behavioral Impairment (MBI).  To appreciate the idea of MBI, you have to first look at what makes up a person’s social environment which would include the size of the social network, the frequency of contacts, and the quality and complexity of social relationships.  The intention of understanding social network is to understand an individual’s perceived loneliness which was scored using a Loneliness Scale**.  Rather than simply asking about the number of family visits or marriage status, these scales give richness to the discussion of loneliness and helps describe quality of life.  You can have many contacts, but still feel alone. Or conversely you can have a few contacts and not feel alone at all and feel good about those people with whom you do have a relationship.  And so, one of the research studies found that feeling lonely rather than being alone was associated with dementia onset suggesting that it is not the objective situation, but the perceived absence of social attachments that increases risk, though – and importantly – it is not predictive.  (Holwerda, et al)

It takes a fair number of skills to effectively navigate the social environment.  These socio-cognitive skills include the capacity to understand emotions in self and others; to decode facial expressions and non-verbal communication; the ability to interpret people’s desires and intention; the ability to regulate behavior and be flexible in social interactions (isn’t it interesting how similar these are to describing a young child on the autism spectrum?)  If a person didn’t have these social skills as a result of being in the early stages of dementia, mightn’t we see behavioral change — what we might have called personality change 20 years ago?  Some researchers have begun to call this Mild Behavioral Impairment defined by these features

  • apathy/lack of drive or motivation;
  • mood lability or lack of affect; possible anxiety;
  • lack of impulse control and occasional agitation and
  • instances of social inappropriateness.

As keen observers that social workers are, being able to recognize these behaviors and describe and discuss with family members seems awfully powerful to me.  For me it speaks to possible markers for early detection and critically, to be able to have meaningful conversations.

 

*JOURNAL ARTICLES USED FOR THIS DISCUSSION

  1. Becker, James T. et al, Depressed Mood is not a Risk Factor for Incident Dementia in a Community- Based Co-hort, American Journal of Geriatric Psychiatry, 2009 August; 17 (8); 653-663.
  2. Byers, Amy L. and Yaffe, Kristine, Depression and Risk of Developing Dementia, , Nature Reviews: Neurology, Volume 7, Jun 2011, 323-331.
  3. Gow, Alan J., et al ,Which Social Network or Support Factors Are Associated with Cognitive Abilities in Old Ag , Behavioural Science Section, Gerontology 2013; 59: 454-463.
  4. Holwerda, Tjalling Jan, et al, Feelings of Loneliness, But not Social Isolation Predict Dementia Onset, Journal of Neurology and Neurosurgical Psychiatry, 2014;85: 135-142.
  5. Jorm, A.F., Is Depression a Risk factor for Dementia or Cognitive Decline? A Review, Gerontology Behavioural Science Section, Gerontology 2000; 46: 219-227
  6. Kim, Kye Y. and Detweiler, Mark B., Apathy in Persons with Alzheimer’s Disease: An Overview, Alzheimer’s Care Today 2010; 11(4); 251-259.
  7. Melville, Nancy A., Loneliness Linked to Alzheimer’s Disease, Medscape.com; November 07, 2016.
  8. Panza, Francesco, et al, Late-Life Depression, Mild Cognitive Impairment, and Dementia: Possible Continuum? American Journal Geriatric Psychiatry 18:2 February 2010 98-116.
  9. Wilson, Robert S., et al, Loneliness and Risk of Alzheimer Disease, Archives of General Psychiatry, 2007;64:234-240.

**THE UCLA LONELINESS SCALE

http://fetzer.org/sites/default/files/images/stories/pdf/selfmeasures/Self_Measures_for_Loneliness_and_Interpersonal_Problems_UCLA_LONELINESS.pdf

**THE deJONG LONELINESS SCALE

http://dare.ubvu.vu.nl/bitstream/handle/1871/49161/2006?sequence=1

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Older Adult Homelessness

 

Growing Old in Shelters and On the Street:  Experience of Older Homeless People, Amanda Grenier, Tamara Sussman, Rachel Barken, Valerie Bourgeois-Guerin& David Rothwell (2016) Journal of Gerontological Social Work, 59:458-477

Homeless for the First Time in Later Life: An Australian Study, Maree Petersen & Cameron Parsell, Housing Studies 2015, Vol 30, No. 3, 368-391

In my home city one can’t help but notice the increasing number of homeless encampments or simply the sleeping bags, tents, cardboard boxes beside the freeways or tucked into the shrubs near our bike paths or side streets.  Daily a news article appears reporting about homeless policy.  But, rarely, if ever, has the issue of being both older and homeless been considered.  Once again our elders are invisible.  This was aptly considered in two journal articles that were the topic of the most recent Round Table.  Both articles conducted in-depth interviews of older adults who were homeless .  Grenier had an overall approach while Petersen explored the becoming homeless for the first time as an elder.   The circumstances of first time homelessness vs. chronic homelessness may require different kinds of services and interventions and certainly a different perspective and understanding of the individual.  But stigma and shame come with either circumstance.

Being homeless and living on the streets means redefining our conception of old.  Most of the respondents in the Grenier study were in their mid-50s and early 60s.  The stress of homelessness and managing shelter life contribute to aging rapidly.   Repeatedly the respondents spoke of extreme fatigue and feeling physically vulnerable in a shelter setting with younger residents.  Many expressed the difficulties of keeping medical appointments and managing chronic health issues.

Senior centers are becoming the “go to place” to find services for older homeless individuals because the services in shelters are not well tailored to the aging population.  But senior centers, too, are struggling with finding appropriate services and stable housing.  Too, senior centers have the added challenge of helping other center members accept a group of people whose personal hygiene and appearance may be new and uncomfortable.  I was enormously touched by one social worker who often uses the comment, “I wonder what it feels like not to have a home.”

Homelessness comes at a confluence of the economy, family disruption, chronic mental health issues, and perhaps substance abuse.  With these many issues at the forefront of any one particular individual it may be difficult to find an appropriate housing setting.  As with other issues in aging, (such as driving or managing one’s finances) finding an acceptable living situation is a balance of autonomy and self-determination vs. safety and self-neglect.  Elders voice a preference for privacy, autonomy, flexibility and safety which may be at odds with one’s ability to live in congregate care which requires a certain amount of social and life skills.  Those who find themselves homeless may have a history of family disruption and unstable relationships with family and friends and have not developed the necessary skills to live in a small community.

The issue of hope and resilience as depicted in the journal article didn’t ring true to many of us.  As social workers we look to strengths, but as one person pointed out she had never heard anyone say they didn’t want housing, rather she heard desperation.  Several of the interview respondents reflected that having lived on the streets they had gained lessons in resilience, strength and hope, and even wisdom.  Older homeless individuals are no different than any other older adult who is trying to gain perspective to their long life journey.  My sense is that when able to reflect, when not struggling just to simply maintain, the insight and wisdom of age may buffer adversity or anchor hope.

Shadow Stories in Oral Interviews: Narrative Care Through Careful Listening, Kate de Medeiros, Robert L. Rubinstein, Journal of Aging Studies 34(2015) 162-168

The journal article that framed the discussion was about shadow stories – but this was not new information for the highly experienced group of practitioners gathered at the Round Table.   As mental health practitioners, it is our role to ask the difficult questions in order to understand the older adults that we serve.  Some settings tend to be more conducive to discovering these stories.

A therapist in private practice not only has the time and confidentiality to dig deeply, but s/he has presumably been engaged to do so.  The older adult/the client has voluntarily entered into a relationship in order to sort out some troubling aspects of one’s life. In other settings, it is not always so easy.  Discharge from hospital or rehab doesn’t allow for extended discussions to determine likes, dislikes, needs, or personal preferences.  Group settings can be hampered by issues of group dynamics including trust and confidentiality. A care manager’s role typically assists with transitions or facilitates a discussion about care responsibilities among family members.  The journal article spoke to the specific setting of a research interview and protocol which, by its very nature is limited, utilizing a prescribed set of questions and a pre-written script.  However, underneath any and all of these situations is a life story that may give insight into what motivates or compels behavior.

The question was raised about the difference between narrative and reminiscence and life-review.  To me reminiscence is the re-telling of life events, historical information, pleasant memories such as music and clothing and visual memories of home and place.  Reminiscence can teach and convey experience and wisdom to younger generations and offer a sense of purpose and meaning – in fact it is treasured by family and younger generations. But narrative gives reminiscence depth.   Narrative care lies in the hands of the listener, the receiver — not simply to hear historical events, but to frame the events and give them a context in which the person can say, “Mine has been a good life, a life well lived.”

We are narrative gerontoloigists!  This was a concept written about in the editorial introduction to the special issue of the Journal of Aging Studies (Volume 34, 2015).  The writers say, “The most important issue for narrative gerontologists…centers on how meaning is communicated in the stories of our lives and on how giving voice to that meaning helps to better understand how a life has been lived, is lived, and can be lived…Narrative care is core care as essential to provide as is food, or shelter, or medical care.”

And when we  sit beside and are truly WITH an older adult it is easy to recognize the power of his or her life story.  And isn’t that what draws us to this work?

 

 

Home Care: Workplace Challenges: Addressing Task Shifting & The Impact of Workplace Violence


Task Shifting in the Provision of Home & Social Care in Ontario, Canad:  Implications for Quality of Care, Margaret Dent, et al, Health and Social Care in the community (2015) 23(5), 485-492

Workplace Violence Against Homecare Workers and its Relationship with Workers Health Outcomes:  A Cross-Sectional Study, Ginger C. Hanson,BMC Public Health 2015 15:11  Article URL  http://dx.doi.org/10.1186/s12889-014-1340-7

Satisfaction With the Relationship From the Perspectives of Family Caregivers, Older Adults and Their Home Care Workers, Liat Ayalon & Ilan Roziner, Aging & Mental Health, 20:1, 56-64


 

Every time I think about home care I get worried.  I worry about the frail elder and how well a home care worker is prepared to care for someone.  I worry about the home care worker and his or her ability to manage the needs and demands.  I worry about how isolating the experience is and ask, why couldn’t this elder be in a good nursing home environment with activities, socialization and on-site health care?  And then I am reminded that home care is the wave of the future and that most elders do want to remain in their own homes and that with good training and compassionate people home care can and does work well.

The Round Table addressed the issue of home care from the perspective of the home care worker.  More frequently home care is described and researched from the client’s perspective:    Is providing assistance with household chores (which is often the only expressed need) adequate?   Does home care relieve familial burden?  Is “selling” companionship the key to just letting someone in the door.  We used 3 different journal articles as our center point to discuss issues of task shifting, workplace violence and aggression and the more general topic of the relationship between home care worker, elder and family.   What I appreciated most was that these 3 articles put the home care worker at the center.  Bringing the home care worker out of the shadows is an apt metaphor when we recognize that the home care workforce is primarily made up of immigrant women of color – an already marginalized and shadowed group.

Nurse delegation was the first topic we addressed and generally received a positive response.  But I walked away from the entire morning discussion thinking that no matter what the tasks are, whether it be mundane tasks of housekeeping or the skills needed for changing wound dressings or catheters, the most salient factors were the importance of observation and monitoring (because frail elders are continually changing), having a team approach and understanding the emotional and human relationship aspect of developing trust as the core of the work.  I do not mean to imply here that the mundane tasks of housekeeping are not complex.  In fact, the mere fact of walking into someone’s home, who may not even want you there, and providing intimate care requires insightful skills and describes the ambiguous nature of the relationship, lying somewhere between formal and informal caregiving.

The discussion about workplace aggression and violence touched on the issue of working with complicated individuals with a history of mental illness.  Once again it was voiced that home care workers need the support of a skilled treatment team and validation that they are not at fault for occurrences of threats or actual acts of violence.  It was highlighted for me that the under-reporting or reluctance to report aggressive behaviors may be culturally determined.  Having to admit to such an act may mean “I’ve done something wrong,” turning it on themselves with feelings of guilt, shame or embarrassment.

A sustaining theme through the morning’s discussion was the need to bring greater professionalism and career building opportunities for home care workers.  Professionalism acknowledges that home care workers are an integral part of an entire care team.  As one person commented, it is important to view home care as a career and not a convenience.   This is an important policy issue that must be addressed at a political level. Those of us who recognize the worth and value of the work and can advocate on behalf of the workers also ultimately advocates for our older adult clients because they in turn will receive the best quality care .

Review: Fraying At the Edges

New York Times Special Section,   Sunday, May 1, 2016

This past Sunday, the NY Times had an extensive article profiling a woman in the early stages of AD.  Geri is an insightful and courageous woman.  Courageous in her willingness to share her experience, and courageous in meeting the challenges of her disease diagnosis and progression head-on.  As a geriatric social worker and care consultant at the Alzheimer’s Association, I have sat with many families and individuals at various times in the disease process and it was thrilling for me to read how clear and explicit Geri is in her description of the changes she is experiencing.  Geri represents a huge culture shift in the world of dementia diagnosis, care and programming.

My first professional experience with Alzheimer’s patients was a brief moment of walking into an adult day health program and then immediately walking out, “Not for me,” I said.  Twists and turns in jobs brought me next to working in a dementia unit at a nursing home.  Thankfully, the nursing home provided excellent care and was a draw for families and the community at large.  Nevertheless, the dementia units were housed in the lower floors of the home, secreted away from immediate public attention.  But still the care and programming was good.  Residents here were in late stages of the disease – wandering the halls, using language that was meaningful just to themselves, unable to bathe or toilet independently, rarely recognizing their own sons and daughters and only occasionally combative.  There I learned a tremendous amount about the disease and grew unafraid.

My next job took me to the Alzheimer’s Association as director of Connections.  In this position I sat with families as they experienced the struggles of managing people at home while in the middle stages and asking questions about what would come next.   There were safety issues, challenging behaviors, repetitive conversations.  At the time, in the culture, the conversation was more about caregiver burden than it was about the person with the dementia diagnosis.  Dementia was horribly stigmatized; we  frequently commented  about people who wouldn’t say “The A Word”  and hoped for a future when the word Alzheimer’s didn’t invoke fear and hiding – just as cancer had once upon a time.

I was fortunate enough to participate in a program offered by the Alzheimer’s Association on the early stages of the disease.  The program was both educational and modeled on a support group concept allowing people – both the person with a dementia diagnosis and their care partners — to voice their concerns and articulate their experience.  This program was a true beginning in recognizing the importance of including the person with the diagnosis in the discussion.  So much has shifted such that now we have Geri.

There were many optimistic themes expressed in this profile — learning to let go, re-invention and finding purpose and even finding some positive aspects in relationships as Geri and her family embrace her changes.

Geri is slowly learning to “let go.”  She no longer feels that she must be the family’s schedule keeper, she understands the way she dresses, for instance, is not critical, and she is letting go of being in control.  But, she says, she is also letting go of her ego.  The question of identity and ego and re-inventing herself returns again and again.  Geri reflects on the “default self” as described in a Richard Ford novel.  What an interesting thought – what do any of us default to?  Which old and reliable patterns do we cling to?   Geri was newly retired and had already begun searching for a new role.  Wisely she began seeing a therapist to explore retirement concerns when she began noticing her cognitive changes.  Can we perhaps understand that through a life-time, we re-invent ourselves, hopefully keeping our essential selves. This seems an important concept.  Any aspect of aging, whether it be physical appearance or mobility or health or cognition requires adjustments and learning to accommodate to change.

What could be optimistic or as someone asks, “How do you avoid sadness?”  For Geri and her husband, her Alzheimer’s diagnosis has been both positive and negative.  She describes it as the “fortunate in the misfortune.”  They have taken this opportunity to be more open with each other, trying new things, as he has with his acting classes and performances.  This is not unlike the experience many appreciate when given a diagnosis of a life-threatening disease.  It is the recognition that life is short and time together is finite.  They have learned to live in the present, this is both functional, given Geri’s cognitive changes, as well as a newly acquired appreciation of the pleasures of living in the moment, as she explains about bird watching:  “With her birds, there was no need to scrabble for the right word.  She didn’t have to talk to the birds, just observe their generous beauty.” For Geri and her husband, Alzheimer’s has given them the opportunity to open themselves to better, more honest ways of being together.

Part of Geri’s positive re-invention is her participating in a support group milieu for other people experiencing cognitive changes.  Also in her new Alzheimer’s persona, Geri begins striking up conversations with strangers.  Is this her intentionally re-inventing herself, experiencing a new sense of open-ness and willingness to engage with people for whom she didn’t have time before?  Is she looking at the world in a new way?   Or has she lost some filters and is less able to interpret social relationships and situations?  Has her judgment about appropriate behavior been effected?  Might this be a harbinger of problems to come?  Will she recognize dangerous situations or people who might want to take advantage of her?

Though there has been much culture change in the world of dementia and Geri’s story strikes many optimistic notes, I was struck by some ironies I perceived in the piece.  So much of the language the author uses is negative – her usage of metaphors to describe the diagnosis of AD as an “earthquake,” or that is has “thundering implications,” and the “undertow” of her daily life.  Doesn’t this just incite fear and worry?  The irony here is that Geri and her family have made adjustments and are learning to live with this new reality, without being pulled down into the pessimistic “undertow.”

I also found it somewhat ironic that as much as Geri fights not to be defined by her diagnosis, ultimately the role she assumes as advocate of those in the early stages and to bring Alzheimer’s out of the shadows, is where she lands and defines herself – as a person with Alzheimer’s.

This essay raises many questions and there is much more to consider.  End-of-life discussions or planning for the future are not really explored.  The fact that Geri has made a very clear decision that she will not end her life early and is extremely articulate about it, requires much further discussion in light of the recent media attention on those who have chosen that path.   And planning for the future is barely raised.  One wonders if this is an effort at remaining optimistic and hopeful as she participates in a clinical drug trail?  Or just trying to remain in the moment.

There is tremendous hope expressed here in Geri’s ability to bring an in-depth and dynamic look at a disease diagnosis that indeed has multiple consequences for family and society.  She is to be commended for being a strong advocate.

Thank you Geri.

 

Doorstep Crime


A Systematic Literature Review of Doorstep Crime:  Are the Crime-Prevention Strategies More Harmful than the Crime?, Caroline Gorden and Julian Buchanan, The Howard Journal, Vol 52 No 5, December 2013, pp 498-515.


What is doorstep crime? While the expression “doorstep crime” sounds more like British English (I might have been more familiar with the word “scam”) and perhaps was the source of my misunderstanding, but even still I wasn’t sure I truly knew what doorstep crime was. What I learned, and begins to make perfect sense, is that doorstep crime relies on a face-to-face interaction between a burglar and (in this discussion) an older adult. For example, a burglar may gain access to a home by distracting or tricking his way in, while a rogue trader (again a British expression) might take advantage of a person by offering help and representing him/herself as a handyman, or a person in authority and pressuring the older adult into an exploitative financial decision. As the journal article points out, the perpetrator is relying on a set of stereotypes about older adults: including that the older adult likely lives alone, is not apt to remember any missing stolen items, is less likely to make a good identification as a witness and is less likely to report an incident. The article stresses the point that when fear is generated about doorstep crime, that in fact may be disproportionate to the actual number of incidents that occur, crime prevention strategies may be more detrimental to quality of life than the real likelihood that a crime will be committed. Creating more fear than necessary, the authors argue, may contribute to a “fortress mentality” thus isolating older adults even more so in their homes.

Two issues arose in the discussion that were not fully addressed and seemed at first tangential to the immediate topic, though relevant. One of the participants at the Round Table questioned the frame of reference, or even bias of the authors. She felt that certain neighborhood or cultural norms were not considered in the research. She described the East LA neighborhood where she grew up and where everyone has bars and locked doors on their homes, yet she doesn’t feel that her 83 year old mother, who still lives there, has a “fortress” mentality. Her mother continues to live comfortably in her neighborhood, people are out on the streets with whom she visits, and doesn’t feel overly threatened by the possibility of a burglary happening.

The second issue was a research finding that that was cited suggesting that after a burglary, an elderly victim was more likely to be in a long-term-care facility. We wondered if it wasn’t the trauma of a doorstep crime that initiated the move to a LTC setting, but rather one’s children used the incident as the trigger for placement claiming that the elder is no longer safe at home. Might this be indicative of the adult child’s fears more than the elder’s? Are adult children overprotective?

From a psychological point of view we wondered if an older adult may have lost the filters to question people’s honesty? And interestingly, how does an older person respond to being offered help, such as much needed lawn care or household repairs; the immediate response might be “Yes, please,” because that is the primary need, without first using good or better judgment in considering who the person is who is offering the assistance

The journal article seemed to raise more questions than answers. What is our responsibility to our elders? Can we protect too much? How do you create awareness without fear? On the one hand older adults may in fact be more vulnerable, yet on the other hand do we not want to honor their ability to make independent choices by providing  information and allowing them to assess their own risks rather than frighten them with worst case scenarios? Can we be too hyper-vigilant engendering more harm than good? Are crime prevention strategies inherently ageist? Are we, or the authors, being age-ist by saying that elders can’t handle difficult information?