The Impact Of Caregiving For Individuals With Alzheimer’S Disease On Occupational Identity
Karner and Bobbitt-Zeher (2005) presented an excellent article “Losing Selves: Dementia Care as Disruption and Transformation” which illustrated a caregiver’s narrative of caring for an individual with Alzheimer’s disease (AD). Despite occupational therapy being a profession driven by evidence-based practice there is limited research in occupational science. By reframing Karner and Bobbitt-Zeher’s article through an occupational lens and employing occupational constructs this paper can inform occupational therapists (OTs) of the influence of caregiving for individuals with AD has on occupational identity (OI).
The Person-Environment-Occupation Model of Occupational Performance (PEO Model) guides this paper and an overarching focus on the construct of OI is utilized to interpret the findings. Karner and Bobbit-Zeher (2005) article was published in the sociology journal Symbolic Interaction. Symbolic Interaction publishes articles utilizing the theory of interaction, in which processes such as identity formation are derived from the interactions between humans and society. In the article, the theory explores the change between the relationship of the caregiver and care-recipient. This theory connects well with the foundation behind the PEO Model, which adds in the component of occupation.
Ziff and Schaffner (2000) successfully applied PEO Model to caregivers of individuals with dementia to better understand the characteristics of caregivers and the interplay between the caregiver and care-receiver as they both have unique PEO interactions as well as shared interactions. The findings of Karner and Bobbit-Zeher (2005) could be guided through utilization of PEO Model as it incorporates the interaction of the person (caregiver), environment (relationship between care-recipient and caregiver) and the occupation (caregiving) and can be applied to both parties involved. The findings were presented under two categories under “Disruption: Losing the Familiar Self” and “Transformation: Becoming a Caregiver” both of which can be reframed and presented as change in OI as a result of occupational disruption, occupational transition and change of occupational role. OI utilizes occupation as a means to develop and express identity. Threats to OI arise when participation in certain occupations are limited or changed.
“Disruption: Losing the Familiar Self” referred to the individual with AD changed behaviours and the impact this had on the caregiver. Specifically, it was considered to be a loss of familial relationships, which brought disorder to their lives. For example, one caregiver felt the loss of a parental-child relationship. Although the caregivers do not have AD, the disease did disrupt their familial relationship of that of a son/daughter or husband/wife. This concept can be explained through occupational disruption. occupational disruption occurs when normal daily occupations are temporarily altered as a result of intrinsic or extrinsic factors. As AD progressed caregivers were unable to sustain the established relationship and communicate with their loved ones. occupational disruption is reflected through the change in extrinsic factors for both parties, as they are unable to engage in previous social relationship. The caregiver further experiences occupational disruption as they engage in new occupations attributed to needs of care-recipient. Furthermore, with novel activities added to their occupational repertoire and previous occupations negated their OI is threatened.
Hasselkus & Murray (2007) conducted a similar study in which daily occupations of caregivers of individuals with dementia were examined through qualitative interviews. They utilized occupational constructs to pose the findings. In the study they found disruptions to established relationships brought forth challenges that created OI confusion. This is important to note as one’s occupation shapes their identity. Unwantedly losing an aspect of identity whilst taking on a new role can be challenging and marked by sadness or frustration. This could be an area for OTs to alleviate, as Whiteford (2000) indicates occupational disruption can be resolved with the correct supports.
Caregivers continued the notion of change familial relationship, which in turn led to the “Transformation: Becoming a Caregiver” findings. The constructs of occupational transition and occupational roles can be utilized to further explain the change of OI. The process of becoming a caregiver was gradual but solidified as an identity as caregiving roles became daily. As alluded to previously, the caregivers have had a change in their occupational repertoire in response to their caregiving responsibilities. Occupational transition is “A major change in the occupational repertoire of a person in which one or several occupations change, disappear and/or are replaced by others. ” Occupations are a way to express on identity going through an occupational transition can challenges one’s identity. Segal (2005) discussed how occupational transitions impact OI. In the study a father transitions from the traditional parenting role to caregiver role as his children Duchene’s muscular dystrophy progresses. Segal (2005) indicated that his occupations such as play changed in meaning. The transition in meaning of an occupation reflected a change in his OI.
Karner & Bobbit-Zeher (2005) also revealed the caregiver identity was acquired for a variety of reasons such as out of love, felt responsibility or availability. Within occupational roles individuals may feel obligated or expected to perform certain behaviours. For example one individual explained their wedding vows stated through sickness and health. Thus there is a cultural expectation that one must accept caregiving role. Occupational role acceptance is dependent on the individual’s perception of the role. For example, one caregiver found the role as an outlet to connect with her mother, which fostered a new relationship. The way in which one perceives the role can influence the connection to the occupational role and how it impacts their OI. Reid and Reid (2000) investigated the role of caregiving in the dying process. They indicated occupational role imbalance could cause distress and stop participation in the occupation. This is when individuals do not want the role or do not have the skills to do the occupation successfully.
Caregiving is a multifaceted occupation that impacts OI. OI is fluid as it influenced by a variety of factors such as occupational disruption or occupational transition. OTs need to be aware of the disorder caregiving presents to OI in order to assist clients in accepting the caregiving role and to develop skills so they can continue performing the occupation. Utilizing the findings from Karner & Bobbit-Zeher (2005), the impact of caregiving on OI was indicated. In conclusion, OTs need to be well informed of other areas of study as findings can be pivotal to understanding and can inform practice.
