Abstract
Background and Purpose:
Good communication between persons living with dementia and their caregivers is one important consideration when fostering a positive relationship and improving the effectiveness of care. Care can be a challenge if the person living with dementia does not feel understood or fails to cooperate with care. The individual may feel disrespected and may resist assistance. Validation therapy is a person-centered method for communicating with persons living with dementia that involves validating the experiences, feelings, and reality of an individual to encourage cooperation or provide for safety. The purpose of this study was to identify frequencies of four behavioral responses (cooperation, apathy, resistiveness, and distress) from persons living with dementia when validation communication strategies were used during care activities.
Methods:
This was a secondary analysis of homecare videos (N = 41) of family caregivers interacting with a person living with dementia during daily care. Behavioral coding was used to examine relationships between validating communication and the response of a person living with dementia. Caregiver use of specific validation techniques in their communication (affirmation, acknowledging emotions, and verbalizing understanding) was coded along with subsequent responses of the person living with dementia (resistiveness, distress, apathy, or cooperation).
Results:
Affirmations produced an 11% probability of a cooperative response by the person living with dementia. Caregiver verbalization of understanding resulted in a 6% probability of cooperation, and silence was associated with an 8% probability of cooperation. Non-validating communication behaviors were associated with negative reactions.
Implications for Practice:
Effective person-centered communication between caregivers and persons living with dementia improved cooperation with care and decreased distress. Affirmations and verbalizing understanding were two types of validating communication more likely to elicit a cooperative response and can improve care quality, decrease caregiver burnout, and mitigate challenging behavioral responses in persons living with dementia.
Keywords: Dementia, Communication, Home Care, Family Caregiving, Validation
Dementia is an umbrella term used to describe conditions caused by abnormal brain changes that affect cognitive function and impair independent daily activities (Alzheimer’s Association, 2021). There are many causes of dementia, and varying types are categorized by the region of the brain affected (Alzheimer’s Association, 2021). Person-centered care, an essential part of providing high quality care to persons living with dementia, was the term used by Tom Kitwood in 1988 to define approaches to dementia care (Fazio et al., 2018). Validation therapy is a person-centered communication technique that considers the lived experiences and individual histories of persons living with dementia. The concept of validation therapy, originally called the “Feil Method”, was first developed and disseminated in the 1970s by Naomi Feil. Erdmann and Schnepp (2016) reference a study from Feil & Altman (2004), which describes this technique as embodying respect and appreciation for persons living with dementia in order to support them in coping with the many losses that these individuals may face over the course of their illness.
Background and Significance
Communication between individuals with dementia and their caregivers can be difficult, and various person-centered methods exist to navigate the intricacies of these relationship dynamics. Person-centered care focuses on building a base for therapeutic techniques from the lived experiences of individuals and their personal stories (Fazio, 2018). Validation therapy techniques according to Feil (1993) include linking behavior to unmet needs, matching emotion, centering on the individual to be validated, and rephrasing (Neal & Wright, 2003). Feil hypothesized the possible outcomes of these techniques would include reduction of stress and anxiety, restoration of self-worth, promotion of communication, and more (Neal & Wright, 2003). By allowing the expression of feelings from the person living with dementia, caregivers prevent increased disorientation and decrease the intensity of emotion (Validation Training Institute, 2021). This idea of person-centeredness is central to providing high quality, validating dementia care. Eggenberger and associates (2013) emphasize the results of a Kitwood (2008) study in which he found that barriers in communication between persons living with dementia and their primary caregivers negatively affect quality of life, care, and relationships overall.
Feelings of loss and confusion commonly associated with dementia increase the risk of encountering or triggering challenging behavior in this patient population. Challenging behaviors include behaviors that are agitated, reflecting active negative expressions towards others (shouting, throwing objects, physical violence), or not agitated, passive behaviors, not directed toward others (excessive walking/restlessness or refusal of care); both are caused by physical, social, and psychological factors (James et al., 2020). One of the most effective ways to prevent challenging behaviors from occurring is to address the root triggers and ensure fundamental needs are being met (James et al., 2020). Validating communication is one person-centered strategy caregivers can use to meet the needs for personhood.
The “unmet needs perspective” implies behaviors that are challenging or resistive to care are the result of the person’s attempt to signify a need or express frustration (James et al., 2022). James and associates (2022) assert challenging behaviors serve to enhance well-being or to reduce distress caused by the inability to meet a need. James and Jackman’s (2017) research referenced by James and associates (2022) describes the 8-item framework that addresses the needs for: comfort, safety, touch, love, self-esteem, control over environment, fun, and occupation. Challenging behaviors may manifest as resistive, distressed, or apathetic, and studies on resistiveness to care and apathetic responses have drawn connections between these observable responses and unmet needs. The findings of a case study by Cunningham and Williams (2007) indicate the importance of communication as a tool for meeting the needs of persons living with dementia and reducing resistiveness to care behaviors. Black and associates (2019) also discovered that neuropsychiatric symptoms, which include delusions, agitation, anxiety, or apathy, were primary correlates of unmet needs.
The purpose of this study was to identify frequencies of four behavioral responses (cooperation, apathy, resistiveness, and distress) of persons living with dementia when communication using or lacking validation communication strategies was used during care activities. This initial study can add to the body of evidence about validation and its effects on the responses of persons living with dementia as well as provide insights into which techniques should be recommended for caregivers.
Methods
This study was a secondary analysis of homecare videos (N=41) collected during the parent study that involved video recordings of communication interactions with family caregivers of persons living with dementia during daily care. That randomized control trial used a telehealth intervention (FamTechCare) in which family members recorded challenging care episodes in the home and uploaded them to a HIPAA secure database for expert review and individualized feedback (K. Williams et al., 2019). Key findings of this study included reduced caregiver depression and increased confidence in providing daily care effectively. The current study used behavioral coding to identify and examine relationships between validating communication and the response of persons living with dementia in a subset of these videos.
In this study behavioral coding was completed utilizing the Noldus Observer XT software to evaluate relationships between caregiver-validating communication and persons living with dementia responses. Noldus provided a way to quantify behaviors, calculate statistics and reliability, and observe and compare coded data on a timeline (Zimmerman, 2009). Frame-by-frame behavioral coding was used to identify moments of mutually exclusive behavioral states defined through coding schemes developed by the research team.
Sample
The parent study contained 1,027 videos, and a total of 221 videos were previously used in a secondary analysis designed to identify effective caregiver communication to prevent and repair communication breakdown (Coleman et al., 2021, K. Williams, Coleman & Hu, 2022). The criteria for video selection for the previous secondary analysis included videos with at least three videos per caregiver-person living with dementia dyad, lasting at least 30 seconds. These recordings showed variable communication and behavioral responses between individuals in the dyad and were previously coded for caregiver verbal and nonverbal communication strategies.
A convenience subset of 41 videos from that study were selected for the current study that included caregiver communication behaviors falling under the operational definition of validation and were previously coded as affirmations, acknowledgement of emotion, encouraging emotional expression, and verbalizing understanding as described by Coleman and associates (2021). They are defined in Table 1 along with examples of statements associated with each behavior. Additional validating verbal and nonverbal facilitative communication behaviors have been identified by other researchers including C. Williams and Parker (2012) and found to support effective interpersonal communication (C. Williams, et. al., 2021). This initial study evaluated an abbreviated set of validation behaviors based on the validation definition in Feil (1993). The first author coded persons living with dementia responses to the each of these validating communication strategies used by caregivers.
Table 1.
Coding Scheme for Caregiver (CG) Validation Techniques and Person Living with Dementia Reaction.
| Behavior | Definition/Examples | |
|---|---|---|
| Caregiver Validation Techniques* | Affirmation | CG makes positive, supportive statements, compliments, or thanks the person living with dementia (e.g.: “great job”; “thank you”; “I like it when we do this together”; “that shirt looks good on you”; “I love you”; “you got it”; “that’s alright”; “you have a wonderful laugh”). |
| Acknowledging emotion | Verbally acknowledges emotional expressions of person living with dementia, (e.g., acknowledging any emotion state, positive or negative (joy, excitement, interest, anger, frustration, feeling tired, sadness, anxiety, embarrassment, etc.) (e.g.: “You’ve been a little off today”; “You seemed confused”). | |
| Encouraging emotional expression | Asks person living with dementias what they are feeling or about their emotions or well-being – encourages discussion of positive or negative emotions. | |
| Verbalizing understanding | CG confirms that the statement or question of the person living with dementia has been understood (e.g., yes, okay, etc.) or the CG answers a question posed by the persons living with dementia. | |
| Other Communication Strategies | Silence | No verbalizations from either the CG or person living with dementia (for more than 5 seconds). |
| Uses partner’s name | Addresses the person living with dementia by name or nickname (chosen or accepted by the person living with dementia). | |
| Provides direction or information | Explains the task or situation; gives information or instruction. | |
| Asks questions | Expectation of response (types of questions were subcoded as clarification, request’s assistance, offers choices, asks permission, shows interest, encourages emotional expression, quizzing, and tag question) | |
| Person Living with Dementia Reaction | Neutral | Person living with dementia is silent and still, no movement or sound (starting code). |
| Resistiveness | Person living with dementia is actively resisting CG intervention or conversation (e.g., turning away from CG, use of the word “no,” head shaking, ignoring CG). | |
| Distress | Person living with dementia is experiencing stress, anxiety, or apprehension (e.g., grimacing, face touching, inability to sit still). | |
| Apathy | Person living with dementia is void of emotion or withdrawn from interaction (e.g., avoidance of eye contact, flat affect, no facial expression, “staring off into space”). | |
| Cooperation | Person living with dementia is cooperating with caregiver conversation or request (e.g., nodding, completion of requested task, smiling, giving compliments, laughing). | |
Person Living with Dementia Response Coding Scheme
To measure the subsequent response of the person living with dementia, the investigative team iteratively created a coding scheme and operational definitions by integrating current literature and observation techniques used to evaluate responses. Practice videos were used to develop and test the coding scheme and to finalize operational definitions for each behavior. The final coding scheme included five reactions: neutral, resistiveness, distress, apathy, and cooperation (Table 1). The operational definitions of the responses of the person living with dementia were created utilizing behavioral criteria from the Person-Environment Apathy Rating (PEAR) scale as well as the Resistiveness to Care Scale, paired with investigator observations during practice videos. Neutral was assigned as the starting code for programming purposes but was operationally defined to include video instances of silence and stillness.
Resistiveness to care was defined as a group of challenging behaviors that interfere with delivery of care, create distress for persons living with dementia and caregivers, and lead to nursing facility placement (Mahoney, 1999). While considering the unmet needs perspective discussed in the literature some instances of resistiveness may be appropriate or warranted, for the purposes of this study resistiveness was considered a negative response. Observable behaviors in this category were taken from the Resistiveness to Care Scale, developed by Mahoney and colleagues (1999) that include threatening, turning away, clenching the mouth, screaming, saying no, crying, kicking, or pushing.
Distress was separated from resistiveness to improve variability and specificity of behaviors. Distress was defined as more nonviolent resistive behaviors indicating the person living with dementia was experiencing anxiety, stress, restlessness, or apprehension. Specific behaviors include touching the face; picking or pulling at the body; clothing, or objects, rubbing of hands or head; crossed arms; fidgeting or unable to be still; an anxious, reserved, or hesitant tone; and/or inability to maintain eye-contact or looking away when asked questions.
Apathetic behavioral responses were defined based on categories in the Person-Environment Apathy Rating (PEAR) scale and included facial expression, physical engagement, eye contact, activity, tone, and expression (Jao et al., 2017). While apathetic behaviors may be observed as like distress or resistiveness, the behaviors described in the Jao and associates (2017) study identify very specific behaviors that fit the criteria of apathetic. These behaviors include the absence of facial expressions, lack of eye contact, flat tone, and minimal verbal expression.
Operational definitions for cooperative behaviors were developed through investigator perception of positive reactions. The reactions of the person living with dementia were cooperative when they their behaviors were in sync with caregiver behaviors such as participating in the conversation or responding to a request. Specific behaviors included nodding, completion of requested task, smiling, giving compliments, or laughing.
The iterative development of operational definitions for the coding scheme helped to ensure consistency between coders on expectations for defining and identifying behaviors during the coding process. Once the test videos were coded, they were evaluated for reliability through coding completed by an independent secondary coder for agreement. The process of independent coding, comparison, discussion, revising operational definitions continued until agreement for coders reached .96 on practice videos.
Data Analysis
Coded data were analyzed using descriptive statistics and sequential analysis to identify frequencies of caregiver communication behaviors and responses of persons living with dementia and to determine temporal relationships between caregiver communication behaviors and responses of the person living with dementia. Sequential analysis was completed with Noldus software using a time lag of 10 seconds. The software calculates the conditional probability and frequency of transitions from the criteria behavior to the target behavior within 10 seconds. The probability is calculated by the number of transitions for a criteria and target combination divided by the total number of transitions from the criteria. The sum of the transition probabilities for each criterion event equals one.
Results
The sample for this study included a total of 25 caregiver-person living with dementia dyads. Demographics for this sample are outlined in Table 2. The percentage of caregivers who were female was 80%, and 60% of person living with dementia were male. The dyads were predominantly white except for one African American caregiver. Of the 25 caregivers, 18 were spouses of the person living with dementia, four were children, and three were categorized as other, which included a friend or paid caregiver. Sixteen of the persons living with dementia were diagnosed with Alzheimer’s disease and three with Lewy body dementia, making these diagnoses the most prominent. The mean age of caregivers was 65.5 years (SD=10.9); the mean age of persons living with dementia was 74.2 years (SD=8.5) with an average of 3.75 years (SD=2.5) since disease onset. A total of 13 persons living with dementia were assessed as having moderately severe dementia according to the Functional Assessment Screening Tool (FAST) scale used to assess an individual’s ability to function and complete activities of daily living (ADLs) (Avalon Memory Care, 2019). Six persons living with dementia were categorized as having mild dementia, three as moderate, and three as severe.
Table 2.
Caregiver-Person Living with Dementia Dyad Demographics (N=25 Dyads) by Number of Video Observations (N=41)
| Variable | Caregivers | Number of Videos | Persons Living with Dementia | Number of Videos | ||||
|---|---|---|---|---|---|---|---|---|
| n | %a | n | %a | n | %a | n | %a | |
| Gender | ||||||||
| Female | 20 | 80.0 | 32 | 78.0 | 10 | 40.0 | 18 | 44.0 |
| Male | 5 | 20.0 | 9 | 22.0 | 15 | 60.0 | 23 | 56.0 |
| Race | ||||||||
| White | 24 | 96.0 | 40 | 97.6 | 25 | 100.0 | 41 | 100.0 |
| African American | 1 | 4.0 | 1 | 2.4 | 0 | 0.0 | 0 | 0.0 |
| Ethnicity | ||||||||
| Not Hispanic/Latino | 24 | 94.3 | 40 | 97.6 | 23 | 92.0 | 39 | 95.1 |
| Unknown/Not reported | 1 | 5.7 | 1 | 2.4 | 2 | 8.0 | 2 | 4.9 |
| Marital Status | ||||||||
| Married | 21 | 84.0 | 35 | 85.3 | 20 | 80.0 | 34 | 82.9 |
| Single/Widowed/Divorced | 4 | 16.0 | 6 | 14.6 | 5 | 20.0 | 7 | 17.1 |
| Education Level | ||||||||
| Less than bachelor’s degree | 11 | 44.0 | 15 | 36.6 | 12 | 48.0 | 23 | 56.1 |
| Bachelor’s degree | 8 | 32.0 | 17 | 41.5 | 6 | 24.0 | 8 | 19.5 |
| Master’s degree or higher | 6 | 24.0 | 9 | 21.9 | 7 | 28.0 | 10 | 24.4 |
| Relationship to Person Living with Dementia | ||||||||
| Spouse | 18 | 72.0 | 29 | 70.7 | ||||
| Child/Spouse of child | 4 | 16.0 | 9 | 21.9 | ||||
| Otherb | 3 | 12.0 | 3 | 7.3 | ||||
| Primary Dementia Diagnosis | ||||||||
| Alzheimer’s disease | 16 | 64.0 | 26 | 63.4 | ||||
| Vascular | 1 | 4.0 | 1 | 2.4 | ||||
| Lewy Bodies | 3 | 12.0 | 7 | |||||
| Fronto-temporal | 2 | 8.0 | 4 | 9.8 | ||||
| Parkinson’s related | 1 | 4.0 | 1 | 2.4 | ||||
| Unknown dementia type | 2 | 8.0 | 2 | 4.9 | ||||
| FAST Disability Category | ||||||||
| Mild dementia | 6 | 24.0 | 12 | 29.3 | ||||
| Moderate dementia | 3 | 12.0 | 5 | 12.2 | ||||
| Moderately severe dementia | 13 | 52.0 | 19 | 46.3 | ||||
| Severe dementia | 3 | 12.0 | 5 | 12.2 | ||||
Note.
Percentages may total more than 100% due to rounding;
Other relationships with the person with dementia were friend or paid caregiver.
Frequencies of the use of caregiver validation communication were collected and percentages calculated. There were insufficient occurrences of “Encouraging Emotional Expression” (see Table 1) for sequential analysis, and it was removed during the analysis stage as a validating communication technique by researchers. The strategy “Provides Direction or Information” occurred 1,065 times and was 39.4% of the communication used in the sample (see Table 3). “Asks questions” occurred at the second highest frequency of 22.1% (599) of the time. Neither of these strategies was defined as validating, but the frequencies were calculated as part of the previous Coleman and associates (2021) study utilizing the communication coding scheme and included the most frequently used communication behaviors coded as other (not validating communication). “Affirmations” had a total of 103 (3.8%) occurrences, and “verbalizes understanding” had 476 (17.6%). “Acknowledges emotion” occurred only 1.6% of the time and “silence” 14.5%.
Table 3.
Caregiver Communication Strategies and Person Living with Dementia Reaction Results in 41 Video Observations
| Caregiver Communication Strategies | Total Occurrences (%) |
|---|---|
| Affirmations | 103 (3.8) |
| Acknowledges emotion | 43 (1.6) |
| Verbalizes understanding | 476 (17.60) |
| Silence | 392 (14.5) |
| Uses partner’s name | 27 (1) |
| Provides direction or information | 1065 (39.4) |
| Asks questions | 599 (22.1) |
| Person Living with Dementia Reactions | Total Occurrences (%) |
| Cooperation | 110 (47.0) |
| Apathy | 9 (3.9) |
| Distress | 77 (32.9) |
| Resistiveness | 38 (16.2) |
Note: N=41 Video Observations.
Frequencies of the person living with dementia reactions are also included in Table 3. A cooperation reaction occurred 110 times and made up 47% of the total reactions. Distress occurred 77 (32.9%) times and resistiveness 38 (16.2%). Distress and cooperation were the most common reactions. Apathy occurred only 9 times making up 3.9 % of the reaction sample.
Sequential results exploring the associations of persons living with dementia responses to specific caregiver communication behaviors were completed, and those behaviors with a probability association to persons living with dementia responses of at least 5% are shown in Table 4. The probability of “affirmations” being followed by cooperation was 0.11 or 11% for a total of 12 occurrences. Caregiver “verbalization of understanding” produced a 6% probability of a cooperative response for a total of 34 occurrences. “Silence”, not categorized as validating, produced an 8% probability of a cooperation reaction totaling 23 occurrences. The use of the person living with dementia’s name elicited a 5% probability of cooperation and a 5% probability of distress.
Table 4.
Conditional Probabilities and Frequencies of Person Living with Dementia Reactions Following Communication Strategies using a Ten-Second Lag.
| Caregiver Verbal Behaviors | Person Living with Dementia Reaction | ||||
|---|---|---|---|---|---|
| Cooperation | Apathy | Distress | Resistiveness | ||
| Validating Communication Strategies | Affirmations | .11 (12) | |||
| Acknowledges emotion | |||||
| Verbalizes understanding | .06 (34) | ||||
| Other Communication Strategies | Silence | .08 (23) | |||
| Uses partner’s name | .05 (3) | .05 (3) | |||
| Provides direction or information | |||||
| Asks questions | |||||
Note. Conditional probabilities under .05 are not included.
Discussion
Effective person-centered communication between caregivers and persons living with dementia improved outcomes and decreased distress. Validation techniques, as defined by Naomi Feil and used in this study, are a valuable type of person-centered communication reflected by the association with positive responses in persons living with dementia. Affirmations and verbalizing understanding were favorable methods of this communication that were more likely to illicit a cooperative response. This aligned with the findings of Savundranayagam & Moore-Nielsen (2015) who found that affirmations, specifically ones that acknowledged feelings, overlapped with the person-centered indicator of validation. Cooperation was overwhelmingly the most common reaction throughout the sample. Silence also improved the probability of a cooperative response, an unexpected finding. Silence may allow time for the person living with dementia to process and express emotion or physical needs and may be defined as validating. The use of the person living with dementia’s name caused instances of both cooperation and of distress. More research is needed to identify what caused this variation. Caregiver use of validating communication produced no negative (apathy, distress, resistiveness) responses in persons living with dementia.
Limitations and Strengths
One limitation for this study was the small sample size. Another limitation was that videos included a convenience sample of dyads from families living in the Midwest. The sample was taken from a previous study for analysis of communication breakdown and repair during daily care activities, and that may have limited the occurrences of validation communication. Sample demographics included predominantly white female caregivers, so the sample was not diverse. Video quality varied with some individuals outside of the camera view or hard to hear. In addition, knowledge of being videorecorded may have altered the dyad’s natural communication and responses.
We use a simple coding scheme for both caregiver communication (focused on validating communication) and responses of the person living with dementia (related to their participation in care activities) that may have affected our findings. In addition, our coding scheme for the person living with dementia response was unbalanced, including three negative and one positive behaviors. The purpose statement of this study was developed based on the presence or absence of these communication strategies to identify four simple and specific responses of persons living with dementia in relation to care activities and was not intended to encompass all potential positive or negative responses. It is important to consider that cooperation is not the only positive outcome of validating communication that exists, and these strategies do not and may not apply to all caregiving situations. There may be situations where a lack of cooperation with care is an appropriate, positive response to caregiver communication during care. The researchers acknowledge the narrow scope of included responses, and the need for future research to expand the definition of caregiver validating communication as well as a more diverse range of possible positive person living with dementia responses. For example, using a partner’s name may be validating by acknowledging the unique identity of the person living with dementia. Silence can be validating by allowing time for a person with dementia to reflect and respond in conversation and should be considered as a positive validation technique in future research.
Strengths of this study included interrater reliability as a result of utilizing two independent coders. Another strength was the use of video recordings instead of personal report of interaction because the videos could be replayed to code and recode different aspects of the interactions and improve understanding of care scenario. Use of time notations in the computer assisted behavioral coding supported evaluation of temporal relationships in the dyadic interactions so that sequential relationships between caregiver communication behaviors and responses of the person living with dementia could be established.
International Implications for Practice
Care for persons living with dementia will continue to grow with the aging population around the world and validation provides a framework for cross-cultural caregiver support for communication with persons living with dementia in diverse languages. Research can provide evidence for how validation differs or is similarly operationally defined in varied contexts, cultures, races, ethnicities, and languages to identify specific best practices for supportive communication.
Conclusion
The results of this study provide future directions for research and encourage further research across a variety of care settings, states, and dyads. The researchers hope to perform a similar analysis on a larger sample that would include dementia care communication in both private homes and long-term memory care facilities. In addition, more extensive behaviors for validating communication and responses of persons living with dementia will improve understanding of these complex and interrelated phenomenon.
Our results may be used to guide communication between persons living with dementia and their caregivers and to inform educational programming for professional and familial caregivers of individuals living with dementia. Educating care providers to validate persons with dementia has potential to improve the person-centeredness of care as well as improve satisfaction, security, and confidence with caregiving (Sanchez-Martinez, et all 2023). Empowering caregivers to feel confident in the use of new, effective communication strategies should be the focus of the education. These communication techniques can improve care quality, decrease caregiver burnout, and mitigate challenging behaviors with persons living with dementia.
Acknowledgments
No conflicts of interest to disclose. We thank Paige Wilson for her contribution to data analysis and Maria Jaros and Sally Barhydt for assistance with manuscript preparation. This research was supported in part by the National Institute on Aging of the National Institutes of Health under award Number R21AG066491. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
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