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

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?

End-of-Life Choices in Late Stage Dementia


My thoughts about this topic began upon reading an article in the NY Times (January 19, 2015) about an 88 year old man who has made it explicit in his advance directive that when he develops Alzheimer’s disease or another form of dementia he wants to be able to refuse ordinary means of nutrition and hydration. He has listed 10 conditions that would trigger this order including “I cannot recognize my loved ones” and “I cannot articulate coherent thoughts and sentences.” He has given his wife permission to enact this order.

More recently this coincided with my viewing of the movie “Still Alice,” and the very recent article in the NY Times magazine (May 17, 2015), written by Robin Marantz Henig, regarding a woman who eventually takes her own life after receiving and living for a period of time with a diagnosis of Alzheimer’s disease.

Henig had previously reported for NPR ( http://www.npr.org/sections/health-shots/2015/02/10/382725729/if-you-have-dementia-can-you-hasten-death-as-you-wished ) on a case of a woman living in a nursing facility in Canada, whose husband and daughter requested that the home stop feeding her. She had written this directive into her living will were she to suffer “extreme mental or physical disability” with no expectation of recovery. The nursing home care staff refused the family’s request and the case ultimately went to the courts to be decided.
Each of these stories brought me back, full circle to Atul Gwande’s recent book about a physician’s view of talking to patients about death and dying. And how difficult it is for doctors to let go of the idea of curing. But in the case of Alzheimer’s or other dementias, we know that we do not have a cure. So how are we meant to think about choices and options at end-of-life?

We are in a contradictory time: on the one hand, we have taken away much of the stigma of earlier stages of dementia by developing creative early stage programs, including people in decision making early on, helping people live well and be engaged despite the disease process. Unlike other fatal or incurable diseases where we have the option “to pull the plug” or stop treatments and use palliative care practices, a person in late stage disease cannot articulate his or her choices, much less independently follow through with one’s choices. Ultimately these individuals are denied being able to live the quality of life choices they thoughtfully put in place in their advance directives. To me, this feels like another way we have stigmatized dementia.

This is a contradiction to the times we live in now with the growing Death With Dignity movement that allows a person to choose his or her way to die. Understandably it is not a common practice, but becoming more acceptable. Sandy Bem, the woman portrayed in the NY Times said she wanted “to die on my own timetable and in my own nonviolent way;” the 88 year old man understood the use of voluntarily stopping eating and drinking (VSED) as an acceptable means for him to hasten death when he considered that his quality of life was not tolerable. We each have a personal threshold of what we consider an acceptable quality of life; despite efforts at documenting them they are not or cannot be honored.

This is all so unspeakably painful and a true ethical dilemma for there is no good option. Yes, some memory care units are doing wonderful jobs of providing person-centered care offering activity programs that stimulate the senses, efforts are made to engage patients in small and meaningful ways, care is taken that patients are comfortable and mobility is encouraged. But truthfully, we have no treatments for late-stage dementia. But the specter of withdrawing nutrition and hydration to the many people now living in dementia units in long-term care facilities is unspeakable. I have read the arguments against following someone’s advance directives to withdraw treatment, including that values and preferences can change over time and people can be adaptable to extreme circumstances. But as a substitute decision maker, how is one to know or feel that we are making the best choices.

So do we honor the person that was or the person who is? Do we reach for the deeper essence of a person beyond intellectual ability or do we understand that there is a time to let go?

Home Care: A Worker’s Perspective


Worker’s Experiences of Crises in the Delivery of Home Support Services to Older Clients:   A Qualitative Study, Joanie Sims-Gould, et al, Journal of Applied Gerontology 32 (1) 31-30


Homecare is touted as the panacea for care of our frail elders. It is more cost effective than residential settings such as assisted living or nursing home care and it speaks to the wishes of many older adults who want to remain in their own homes preserving a sense of independence, familiarity and continuity.

Our discussion of homecare, from the worker’s perspective, was one of the most interesting and far reaching conversations we have had at the Round Table. We were well represented by supervisors – one from a publicly funded home care agency and one from a private pay agency; by several of us who are both professionals and daughters who are caring for our own aging mothers in various degrees of decline; one home care worker; and one social worker who has limited experience accessing home care. From our different perspectives, we discussed the complications of an aide entering the privacy of someone’s home: the adult client has had a recent change in independence perhaps affecting her sense of self; family members may be urging, even forcing her to accept services; a family system has long-standing dynamics and unique patterns of interactions. And the home care worker’s expectations and assigned job is “to help.” Inevitably there is ample room for miscommunication, problematic relationships and troubles with boundaries. The success of an agency will lie in its ability to make a good match between an aide and the family by defining and clarifying expectations.

While there were ample case examples of difficult situations, overstepping boundaries and power struggles, one of our supervisors skillfully portrayed a picture of homecare services that works well more times than not. She described the bell-curve of good care and the good matches that evolve between homecare workers and their clients. Unfortunately it is the tails of the curve that we hear about most frequently, about which we worry. These are the complex instances involving clients with mental illness, dementia with an aggressive and agitated component, family members who intrude in care, not always in the best interests of the frail elder, or the problems with melding and understanding cultural differences.

I’ve never been a great proponent of home care having worked in a nursing home that provided excellent care. I understand the intent but have been concerned about the isolation of homecare workers who are expected to be the eyes and ears of some very complicated social, mental health and medical/nursing needs. My concern has been for both the elder and for the homecare worker. The discussion though, allowed me to shift my perceptions. I was persuaded by the argument that in-home care, if done well, can be more flexible and individualized for older adults and can actually support and encourage greater independence in ADLs, which is not an insignificant accomplishment. Too often in congregate care settings, independence is forfeited for adherence to schedules and efficiency.

That said, there are still many pitfalls that seem to coalesce in the area of communication and boundaries. One set of confusions sets in when a certain comfort level and good relationship has been established. Expectations can then begin to shift either because the homecare worker has become too attached and cares so much she is willing to do more than the assigned tasks primarily because she doesn’t want to see the older adult in need. Or from the client’s perspective, he or she might begin treating the worker as a family member. In either case, boundaries get blurry.

One supervisor had an aha! moment. She recounted this scenario: Homecare worker walks into a home, newly assigned, and asks, “Show me what you’d like me to do.” The supervisor then gets a phone call from the family member who complains, “Do you know, you’re caregiver didn’t even know what to do!” What a set of miscommunications! The homecare worker, new to this family, thought she was being respectful and not intrusive, while the family’s expectations were for her to come in and efficiently do the job as requested.

Two of us spoke about our mothers, both of whom recently agreed, cautiously, to use home care services. One woman refers to her worker as a personal companion; the other has reluctantly agreed to have an aide do her laundry, and “by-the-way, sometimes she brings me delicious things to eat that are so interesting from her culture.” These two elderly women, both still very cognitively intact, expressed the alternate side of the relationship: they feel they are doing a favor for the home care worker. When “Mother” visits with her companion, she feels she is being a good listener and can help her solve her problems by listening and being the voice of experience. And “Mom” knows that her aide works hard to support many family members and feels that she is remunerating her with a fair income. She also has expressed a certain amount of discomfort in being in an employer/employee relationship and the hierarchy of power that it implies. She mitigates this discomfort by engaging her aide in discussions about her family both here and at home in Haiti, letting her know that she values and respects her as a person, not merely an employee. Both these women have found a sense of purpose and of being useful instead of being just the recipient of care.

I was urged to write a check list of recommendations – one for agencies and one for families – that would help clarify expectations. But the intention here was to illuminate the many faceted dynamics of this service. I am confident that most agencies adequately explain their services. Families however are wanting or needing or desiring that their older adult be as protected as possible. Homecare is not a perfect solution but when it works its’ strengths lie in developing and maintaining personal connections and understanding the uniqueness of human relationships.


Doll Therapy in Late Stage Dementia


The Therapeutic Use of Doll Therapy in Dementia, Gary Mitchell & Hugh O’Donnell, British Journal of Nursing, 2013, Vol 22, No6

*Lying to People With Dementia: Developing Ethical Guidelines for Care Settings, Ian A. James, et al, International Journal of Geriatric Psychiatry, 2006: 21: 800-801


In discussing late stage dementia the use of dolls and stuffed animals was the topic of the last Round Table Discussion Group. Almost unanimously we agreed that despite the initial discomfort of feeling that we might be patronizing and infantilizing an older adult, the fact is that this behavioral and non-pharmacological intervention could be beneficial and calming to an otherwise distressed patient.

This was highlighted by one of us who recounted an experience of working with an older patient in the advanced stages of dementia. Daily, Mary had a series of falls while at lunch time. Despite multiple efforts at trying to keep her from getting up during mealtime, she continued to do so. This one gifted caregiver eventually sat down with Mary at the lunch table and engaged her in a conversation and asked “Where are you going?” She replied that she was looking for the baby, “The baby is crying,” she said. The care staff found a baby doll, gave it to Mary and she was then able to remain in her seat for the duration of mealtimes as she tended to her crying baby. Unfortunately, Mary’s family was less than pleased seeing their mother and grandmother cradling a child’s toy. But again, the experienced care staff took the time and effort to educate the family about late stage disease and behavioral interventions. Eventually the family came to accept Mary’s “relationship” with the baby doll, especially when Mary named the baby after a beloved child who had died at a young age.

As referenced in the article, this is a perfect example of Kitwood’s statement “if a need is met, a person may be able to expand.” In the above instance, a need was met for Mary and she was able to “expand” or participate in other activities as she was no longer distracted and agitated.

I was particularly interested in the connection that this article made to attachment theory, which I had studied as an undergraduate student in developmental psychology. That dementia patients are expressing their attachments to loved ones, but do not the have the verbal capacity to articulate these losses, using sensory objects is understandable. From attachment theory, in a similar way that children use transitional objects, such as blankets and stuffed animals, to help them through stressful times in their development, it is possible to consider that dementia patients too may feel lost, not in control and distressed and may be comforted by familiar objects to touch, hold and cuddle.

It was suggested that the use of dolls and child-like toys, or activities that may seem demeaning, can be difficult for family members to accept because of their emotional attachment to their loved one. Family members are often too focused on losing the person they once were and it is jarring to see an 80 year old playing in a child-like fashion. Indeed there are critics of the use of doll therapy for this exact reason. But activity and care staff from long-term care settings are advocates of these techniques. Learning to “join the moment” and find pleasure in the present is a skill that care staff can model for families.

The use of doll therapy is one aspect of the ethical nature of lying to dementia patients. Whether it is lying about the car not working, or a visitor who will be coming shortly, or using a doll, it can be uncomfortable for families and staff. In order to ease our own discomfort and to offer families some suggestions for how to navigate this we each had some choice euphemisms: dissuade, creative deception, adjusting the truth, re-framing, pretending, benign manipulation.

James, et al* made an effort to develop some guidelines for care staff that I believe are well considered, with special regard for both the person with dementia and for care staff. These are useful and we can and should be mindful of them. Some of these guidelines include:

  • Lies should only be told if they are in the best interest of the resident
  • Consideration should be given to residents’ ability to retain the truth
  • Communication with family should be required and family consent gained
  • A lie should be used consistently and across people and settings
  • Staff should feel supported and not feel at risk of being accused of misconduct
  • The act of telling lies should not lead staff to disrespect the residents.

Too often we forget about the late stages of dementia diseases. Those of us who have a clinical practice helping families adjust to the changes brought on by one family member who has an Alzheimer’s disease diagnosis, leave the late stages to dedicated care staff in residential memory care units. My first experience working with dementia was in a long-term care facility on a dementia unit. It was a profound experience and though it was eventually not my greatest interest, understanding the ultimate trajectory of Alzheimer’s has informed my practice and understanding of the process. Too often we are shy about painting a gloom-and-doom picture for families, fearful of their responses. Certainly families wish to maintain as much normality as possible before residential care may become a necessity, but for some families having more information about late stages and offering it at the right time may be helpful in the continual adjustments that must be made.