Family caregivers and the uncertain process of dementia

Although the caregiving duties are highly variable over time, different phases in the caregiving process can be discerned when the needs of people with dementia and the duties of their caregivers are considered longitudinally. Caregiving for persons with dementia typically follows a relatively linear trajectory driven by the progressive cognitive and functional decline of the care recipient, which is enriched as cognitive deficits progress with more or less severe behavioural and psychological symptoms.

Prior diagnostic disclosure: The incipient phase of a long journey

The process begins with emerging awareness of the future caregiver that there is a problem and something is amiss. Forgetfulness, transient disorientation not only in time but also in place when running into unexpected road works, changes in manners, especially in frontotemporal dementia, and accumulating behaviours that can hardly be explained (e.g. missed payments, financial debts) make family members suspect that something is seriously wrong and give them a profoundly uneasy feeling. In addition, family members notice that their family relationships increasingly lose their harmony, since situations escalate more often and easier and home rituals and the normal course of things are threatened by a growing sense of disharmony. Nonetheless, the commonly slow, salient progression of these changes can mask in the short term what is actually going on. Both the person with incipient dementia and his/her caregivers do change and more or less reactively alter their behaviours. This stage is experienced by future family caregivers as confusing and unclear. It entangles them into a new situation of direct confrontation with more severe symptoms and their consequences for their quality of life.

Diagnostic disclosure clarifies the cause of or the setting in which the aforementioned alterations take place. In many cases it is welcomed by family members as the end of a period of uncertainty and unexplainable and unexpected behaviours or events. The diagnosis offers explanations which facilitate understanding and adaptable and positive responses to adversities. On the other hand, family caregivers feel that through de facto undertaking of new functions they navigate alone in uncharted waters, since they have no idea of what can be expected of the future. They undertake in most cases a new role without proper preparation with regard to the necessary skills and knowledge. They are confronted in many cases by the reluctance of specialists to speak openly about prognosis and efficacy of the available therapeutic options. Physicians do not ask family members about concerns they may have about providing care. Family members interpret this stance as a way to avoid upsetting family members, even though it is likely that physicians not so rarely lack knowledge about daily life with dementia. In such a way stereotypes and prejudices related to dementia (humiliating progressive process, social exclusion, lack of therapeutic options, nihilism) overshadow the disclosure of the diagnosis and give birth to exacerbation of fears, uncertainty, lack of hope and trust in the future. It is of note that a number of family members choose not to inform the person with dementia about the diagnosis in order to avoid unnecessary anger, pain, disappointment, distress and suffering and because they suppose that diagnosis disclosure could result in an exacerbation of symptoms.

Caring at home: an isolated and exhausting way of living

After diagnosis disclosure most people try to remain optimistic and adjust to the new phase of their life. Persons in the early stage of dementia often downplay the need for care due to their concerns about becoming a burden to family and due to their insistence on continuing life as they knew it. Nonetheless, the awareness within family of disabilities and behavioural changes pointing to the need for caregiving, gradually increases. With awareness that one is becoming a caregiver comes an array of daunting questions about how to adequately meet the needs of the care recipient, for how long and what will it take to meet these needs. Further questions refer to distribution of caregiving roles within the family or broader social network and how they could be negotiated, as well as to related risks, costs, and benefits. Other common questions are focused on the need of paid help to supplement family care, its costs and if and how these costs can be covered. In response to this awareness of need for caregiving, one or more family members emerge as the caregivers based on existing relationships, gender roles, cultural norms and expectations, and geographic proximity.

It is likely that family caregivers feel disappointed with their friends and relatives and their world is getting smaller. There are social changes with a shift from usual participation in life activities to a focus on the challenge of being a caregiver. Even positive comments of relatives and friends during the period of early stage dementia symptoms are misinterpreted by caregivers as neglecting and not acknowledging their courageous and enduring efforts to support the person with dementia and cause further frustration. Moreover, not rarely, friends reluctantly pay visits to the person with dementia and his/her family because of difficulties to deal with the changed situation. They face difficulties to find topics to discuss about and to find the right attitude. Behavioural symptoms can further perplex the situation. They can be misinterpreted and may result in quarrels. In order to avoid specifying and explaining the role of dementia symptoms in the occurrence of misunderstandings, which ca be experienced as hurtful to the person with dementia, family caregivers are reluctant to remain socially active and to remain involved in the social activities they used to.

Changes in relationships do not leave unaffected the relationship between the person with dementia and his/her family caregiver. As caregivers move into their role, they experience a redefining of their relationship with the person with dementia. A gradual sense of detachment has been reported. Caregivers experience a gradual drifting away from their loved ones. Cognitive deficits impair the participation of people with dementia in previously shared activities of spare time (e.g. watch movies, talk about newspaper articles or books). The ambiguity of being physically present in a significantly changed emotional and mental way is confusing and disappointing, and strengthens distance and misunderstanding. In addition, the increasing contingence of the person with dementia on his/her child or spouse undermines the balance of the relationship and confronts the caregivers with the feeling that sometimes a child has replaced their spouse or parent. The relationship may in some cases benefit from this transformation. Masks can be removed and people become pure and fragile. Relationships between the person with dementia and his/her carer that were described as somehow strained prior the onset of dementia symptoms may be enriched and deepened by the caring experiences and become relaxed and more emotionally intimate.

The caregiving process may lead to caregivers exhaustion and desperation as increasing functional decline is related to growing reliance on the caregiver for assistance. Over time, caregiving tasks often expand to include providing self-care tasks, playing the role of a surrogate decision maker for the care recipient, and providing specialized medical care such as giving injections. As dementia progresses the common factor of the caregiving trajectory is the expansion and increased complexity and intensity of the caregiver’s roles and responsibilities. Protecting people with dementia from incidents or accidents is an activity around-the-clock resulting in feelings of absorption in a landscape of hopelessness, solitude and no way out of this prospect less present and threatening future. Caregivers become the “invisible patient” and often have significant health and psychosocial needs that negatively influence caregiving, if they remain unmet.

Relocation: balancing between relief and guilt.

The exhausting caring circumstances are further complicated by disruption in day and night rhythm, domestic accidents and unreasonable conflicts that can hardly be solved. Caregivers feel an overwhelming strain which overburdens them both physically and emotionally. The relocation to a nursing home seems to be the only way out, an inevitable decision. Nonetheless, such a decision is postponed to the last moment, since it is encountered in many cases as a betrayal of the person with dementia and of the relationship between the family caregiver and him or her, whilst such a relocation can embody in some countries a point of social criticism on the basis that caregivers own rest is prioritized over the welfare of his/her parent or spouse. The relocation of the person with dementia broadens the relational distance and detachment with a spatial dimension.