Dementia Notes?
Dementia is a basket of several diseases sharing similar patterns and symptoms, including short-term memory loss, difficulty in communicating (finding words), poor reasoning, personality changes, reduced ability in abstract reasoning, poor judgment in managing money, and disorientation. Varieties of dementia include Alzheimer’s, comprising about 70% of cases; vascular dementia, caused by ischemic (mini) strokes, accounting for 15% of cases; Lewy body dementia at about 7% of cases; and mixed dementias combining several conditions.
Although some symptoms vary among these dementias, these are unimportant from the caregivers’ perspective. However, within Alzheimer’s, it is helpful to distinguish between early onset Alzheimer’s, a condition that may start when someone is in their mid-fifties and later onset Alzheimer’s, which typically begins in one’s seventies. The care for early onset dementia patients is often intense, of shorter duration, and when the caregiver is younger but may still have other family responsibilities. Caring for later onset Alzheimer’s occurs when the caregiver is older, may have their health problems and is more prolonged, often lasting a decade.
Why is caring for dementia patients uniquely stressful?
Caring for someone with a physical disease or an injury often creates a bond, as both patient and caregiver work as a team to fight the intruder. The patient is cognitively able to be a partner in care.
Caring for a dementia patient is quite different.
Life in the early stages of dementia often proceeds “normally,” as the patient often retains the capacity to operate independently and may continue to drive. Seniors’ moments” can be laughed off. Caregivers may resort to deception: supplying missing words, finding excuses to follow the patient as they visit the washroom in a restaurant to ensure they can find their way back to the table, leaving extra time for them when they’re driving to and from familiar locations, reminding them gently of what and how to do things.
Then things change.
- The caregiver, with a normal brain, must contend with someone with an increasingly abnormal As dementia progresses, patients can develop an impaired sense of their illness, a condition known as anosognosia. In earlier senior moments, reasoning mistakes are laughed off. Then reasoning fails, and the caregiver must resort to tricks and deception to “jolly” the patient to comply with medication, eat/not eat, or go to bed. The patient becomes an adversary to outwit.
- As dementia deepens, caregivers experience deep conflict as the normal and abnormal brains diverge. When rational reasoning fails, the caregiver often becomes angry and may even resort to physical coercion to force compliance with medication regimes. This usually worsens the situation, and anger gives way to despair and regret, followed by sadness as one recalls how far the patient has declined.
Dementia lays a trap for both patients and caregivers. According to Dasha Kiper (Travelers to Unimaginable Lands), caring for a dementia patient changes the caregiver psychologically, emotionally, and physically. Dementia not only affects the patient’s brain, but it also damages the healthy brain of the caregiver.
Dementia patients present radical physical, emotional, and mental health consequences for caregivers. Stress can become acute and overwhelming, especially when the care tasks fall on one person, such as a spouse or a child, who assumes the bulk of the care.
Kiper writes, “… the healthy brain’s ingrained biases and proclivities make it unequipped to deal with the cognitively impaired brain.” As the healthy brain struggles to reconcile and manage the patient’s increasingly perplexing behaviour, the caregiver experiences neurological changes. “The caregiver strives to align the current reality with the memory of a previous life together, which becomes ever more difficult as the disease progresses.” The resulting clash triggers deterioration in the caregiver.
What does it mean to support the caregiver?
The decision to call in support from outside the family.
As dementia deepens, the burden on caregivers increases. Often, family and friends pull back. Many excuses emerge for not supporting the primary caregivers.
Caregivers can also shield the patient from community exposure to minimize gossip, especially when the patient has a high profile. Isolation creates deepening despair for caregivers, who realize a much more difficult phase has emerged, one that could persist for years.
Upon presentation of symptoms, family physicians usually refer patients to specialists to ensure a treatable condition is not causing dementia symptoms. Mental competency scores such as the MoCA (Montreal Cognitive Assessment) or the MMSE (Mini-Mental State Exam) serve to support a diagnosis of dementia. Periodic testing measures disease progression.
Once dementia is confirmed, most provinces have a homecare program that offers direct home care services and financial assistance. This allows the family to secure and manage their care by contracting with a home care company. Patients may also attend day programs.
Public health agencies use cognitive competency scores and a home visit to assess the financial support needed to secure external paid caregiving for the family. This also indirectly measures the caregiver burden.
At some point, families discuss transferring the patient to a residential facility. Patient cognition and other medical issues all influence this decision. Of course, the family’s capacity to offer care also determines whether residual care is preferred.
However, many dementia patients have no other significant health issues. Assuming aggressive and/or violent behaviour can be managed safely (usually through medication), family caregivers may prefer to keep the patient at home for as long as possible. The evidence suggests that maintaining a familiar home setting increases the well-being of dementia patients. The recent experience of COVID-19 within personal care homes creates a strong argument for managing care at home.
Why do primary caregivers resist external (non-family) support?
Many caregivers resist non-family support except when medical conditions require a visit from a health professional. Several reasons cause this delayed response.
- Remember that initially, the caregiver may have been a co-conspirator disguising the disease to protect the patient’s dignity. Caregivers often want to continue the deception, not realizing that most friends and family are aware. Shame, embarrassment, and feelings that bring in external help betray the commitment to the patient can also play their part. Bringing in external support violates the agreement between caregiver and patient to offer mutual support “till death do us part.”
- A sense of loyalty and privacy prevents considering “a stranger” as part of the caregiving when a lifetime bond exists between partners, siblings, parents, and children. Especially when the patient has had a high community profile, the family may wish to remain discreet; stigma remains a factor even in our enlightened age.
- Finally, the caregiver usually believes they know how to care for the patient better than a stranger. It’s “their person,” after all.Perhaps arrogance or safeguarding their previous life play roles here. Again, protecting the patient from judgment while simply not trusting a stranger to care for the patient will combine to justify further isolation for both caregiver and patient.
What are the risks of delaying external support?
Caregivers often deny how distorted their lives have become in caring for the abnormal brain. Indeed, the exhaustion of caregiving is usually apparent to everyone but the caregiver. The emotional toll comes in varying forms: the cycles of frustration when the patient refuses medication or wanders away, followed by joy when the patient emerges from behind the cloud and connects “like the old days”, to a deep sadness when the patient retreats again behind the veil.
Caregivers who support the patient at home have elected a noble calling. They wish to give their loved ones the best life possible. However, as dementia progresses, fatigue sets in. This impairs judgment and the capacity to care with empathy. The constant and repetitive cajoling to get the patient to take medication or restrain them from walking out the door, many times, is tedious and frustrating. Maintaining gentle redirection or pausing to retry the meds becomes impossible for the tired, impatient caregiver who may resort to physical restraint. This never ends well.
A caregiver who loses control will always create a multitude of other problems. For example, a critical challenge occurs when caregiving worsens the physical capacities of the caregiver. Because dementia is a disease of old age, many caregivers are the same age or even older than their patients. The physical and emotional toll of caring for a dementia patient can damage the caregiver’s health to the point where they cannot continue. The only option is institutional care unless other competent family members will step up.
Although dementia erodes cognitive function, dementia patients usually respond to emotion and tone of voice—impatience and pleading lead to increased stubbornness by the patient. Caregivers must plan care strategically through the dementia journey to ensure their loved one has the best life possible. This means the caregivers must maintain their capacity to manage until “the end.”
Compassionate and experienced support allows the caregiver to offer the patient the best quality of life in the final journey.
