Talking About Mental Illness in Long-Term Care: "All There"

We often find it difficult to put into words phenomena we do not completely understand. The human mind presents a good example of this struggle. The chemical and electrical communication of millions of neurons dictates all of our conscious and subconscious thoughts and actions, giving rise to our existence. With such complexity, it is no surprise that the brain remains the last of our organs to be fully understood. Hindered by our misguided perceptions, our inaccurate language can negatively affect our attitudes towards certain situations or people. Without complete understanding, we risk perpetuating a stigma.

As with any organ, our brain is susceptible to degenerative illness. The result is a pattern of cognitive decline that approaches total loss of brain activity. The gradual neuronal death that afflicts many older adults is a condition with which many of us are familiar. Medicine refers to this illness as dementia, in which each passing week results in a gradual atrophy of the neurons that keep one’s brain and body functioning. Dementia can arise from many causes but is a terminal illness nonetheless.¹ Older adults living with any type of dementia find themselves in a continual decline in their cognitive capacity despite best available medical treatments.

Unfortunately, society has come to describe individuals in cognitive decline either as being “all there”—signifying the asymptomatic phase of dementia—or “not all there”—signifying the late stage of dementia. It is a crude expression as related to both the psychological and behavioral effects of cognitive decline. Such labels can contribute to the stigmatization of this illness as applicable to a segment of the most vulnerable older populations in our society. And, as with any stigma, such a mindset will have detrimental consequences in the future. Thus, it is worth reconceptualizing the way in which we describe individuals with dementia. 

Too often, one will refer to an older adult’s state of cognition in terms of binary properties: present or absent. The following examples illustrate the kinds of statements commonly heard among both healthcare professionals and family members:

“Mrs. Smith has been living in our retirement home for a number of years now. Regarding her health, she spends much of her time in a wheelchair, but otherwise, she’s all there.”

“Jack has had multiple surgeries for his heart conditions these past couple years. Cognitively, he’s all there, but his physical health isn’t looking so good.”

This type of language fails to account for the fact that one’s personalities, emotions, and journey through life are not binary (ie, “there,” or “not there”). These are the defining human qualities that we develop over a lifetime. The use of the phrase “not all there” suggests that, due to the onset of dementia, parts of an individual’s being cease to exist. Such a perception would suggest that they are no longer whole. And if their minds are no longer “there,” then the disease has irreversibly redefined them as a person. 

Perhaps even more dangerous is when we use such fatalistic language when speaking of older adults with mild cognitive impairment. The progression of dementia often includes what is described as a “subsyndromal phase,” during which an individual expresses symptoms of, but does not meet diagnostic criteria for, dementia.² The following example illustrates this well:

“She was diagnosed a year ago. Cognitively, my mother is still there, but there’s going to come a day when we need to put her in a home.”

Dementia indeed alters one’s cognitive abilities, resulting in changes in personality (a fact to which anyone who knows someone living with late-stage dementia can attest. So perhaps there is a “kernel of truth”—as Richeson and Shelton³ describe—in the phrase “all there” that affords it particular strength.

Nevertheless, even if well-intentioned, referring to an older adult’s cognitive health as something that is “present” changes how we view the person whose cognition is “absent.” Let us consider why.

Diagnostic Labeling

The first reason is concerned with the notion of “diagnostic labelling,” which is a convenient, albeit improper, means of segregating patient groups by a set of definable boundaries.^4,5 Diagnostic labels allow healthcare professionals to assume that all members of a group are generally homogeneous in the underlying nature of the illness—in our case, dementia—regardless of whether there is some variability in the presentation of symptoms.⁴

This “labeling,” however, promotes the stigmatization of this disease. Associated with this label is linking the individual in question with the predominant negative stereotypes about this group of people.⁶ This encourages the use of labels and initiates a dangerous cycle. To use language that dehumanizes the individual in question speaks, in part, to our desire to simplify the complex, and, in part, to our lack of understanding of the disease. Although the use of the phrase “all there” might not be considered a “label” by some, it perpetuates this cycle, and, thus, the implications remain the same. 

Stigmatizing Language

Secondly, the continued description of those living with dementia as “all there,” “still there,” or “not all there” in the healthcare field and among families and friends will have a subtle, yet persuasive, effect on how others perceive the individual with dementia. This is especially dangerous for the new generation of healthcare trainees who may be working in an environment that condones this type of language. The individual may begin to experience self-stigmatization and adopt the stereotypes prevailing in society regarding their mental illness.⁶ Therefore, it is critical that staff working with older adults (eg, long-term care, community care, home care, etc.) be aware of the impact of the language used.

In my experience, the actual use of stigmatizing language pertaining to mental health is not pervasive among those caring for older adults. The majority of healthcare trainees and staff are cognizant of using what Garand⁵ refers to as “value-neutral and label-free language.” However, studies continue to find that even well-trained mental health professionals demonstrate prejudice and stereotypes about mental illnesses.^7,8 Therefore, there is an opportunity for us to continue to promote awareness on these issues in our institutions and workplaces.

Segments of the older adult population who live with mental health conditions face a “double stigma.”^9,10 As recently as 10–20 years ago, dementia was often considered a natural part of aging,^11-13 having been portrayed in both fictional and academic literature as “the mind robber” and “a death before death.”¹³ As these outdated mindsets are gradually being replaced by a more informed understanding of dementia, so should outdated language be replaced with more consciously selected language regarding the disease.

Rephrasing some of the previous examples highlights the power of conscientiously selecting one’s words: 

“Mrs. Smith has been living in our retirement home for a number of years now. Regarding her health, she spends much of her time in a wheelchair, but otherwise, she doesn’t show any signs of cognitive impairment.”

“My mother was diagnosed with mild cognitive impairment a year ago, so we’ll be monitoring her health closely for signs of changes. Currently, however, she is able to live and function independently.”

It is not uncommon for an individual living with dementia to respond positively upon hearing their favorite music, or to be delighted when seeing a grandchild, or to enjoy the company of others even if they are no longer able to communicate. Anyone would agree that these are the therapeutic moments that should be cherished and fostered. However, to arrive at this point requires that our society alter its mindset that an older adult experiencing cognitive decline is no longer the “same person” that they used to be (that is, no longer “there”); and changing our mindsets starts with changing our language. 

1.     Robinson A, Eccleston C, Annear M, et al. Who knows, who cares? Dementia knowledge among nurses, care workers, and family members of people living with dementia. J Palliat Care. 2014;30(3):158‚Äì165.

2.     Petersen RC. Mild cognitive impairment: transition from aging to Alzheimer‚Äôs disease. In: Iqbal K, Sisodia SS, Winblad B, eds. Alzheimer‚Äôs Disease: Advances in Etiology, Pathogenesis and Therapeutics. Chichester, UK: John Wiley & Sons, Ltd; 2002:141-151.

3.     Richeson JA, Shelton JN. A social psychological perspective on the stigmatization of older adults. In: Carstensen LL, Hartel CR, eds. When I‚Äôm 64. Washington, DC: National Academies Press; 2006:174-208.

4.     American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 4th ed. Washington, DC: American Psychiatric Association; 2000.

5.     Garand L, Lingler JH, Conner KO, Dew MA. Diagnostic labels, stigma, and participation in research related to dementia and mild cognitive impairment. Res Gerontol Nurs. 2009;2(2):112-121.

6.     Angermeyer MC, Dietrich S. Public beliefs about and attitudes towards people with mental illness: a review of population studies. Acta Psychiatr Scand. 2006;113(3):163-179.

7.     Lauber C, Anthony M, Ajdacic-Gross V, R√∂ssler W. What about psychiatrists‚Äô attitude to mentally ill people? Eur Psychiatry. 2004;19(7):423-427.

8.    Blay SL, Toledo Pisa Peluso E. Public stigma: the community‚Äôs tolerance of Alzheimer disease. American J Geriatr Psychiatry. 2010;18(2):163-171.

9.    Holm AL, Lyberg A, Severinsson E. Living with stigma: depressed elderly persons‚Äô experiences of physical health problems. Nurs Res Pract. 2014;2014:527920.

10.    World Health Organization and World Psychiatric Association. Reducing Stigma and Discrimination against Older People with Mental Disorders. Geneva: World Health Organization; 2002.

11.    Lebowitz BD, Niederehe G. Concepts and issues in mental health and aging. In: Birren JE, Cohen GD, Sloane RB, et al., eds. Handbook of Mental Health and Aging. 2nd ed. New York, NY: Elsevier; 1992:3-26.

12.    Graham N, Lindesay J, Katona C, et al. Reducing stigma and discrimination against older people with mental disorders: a technical consensus statement. Int J Geriatr Psychiatry. 2003;18(8):670-678.

13.     Behuniak SM. The living dead? The construction of people with Alzheimer‚Äôs disease as zombies. Ageing and Society. 2011;31(01):70-92.