The diagnosis of dementia is invariably shocking to take in even if, as a rule, it tends to be suspected at least by the family. In the commotion of this life event, one message typically fails to register effectively – that there are changes to the person living with dementia which can make a difference in how they manage day-to-day, their enjoyment of life and the well-being of those looking after them. This is rarely the fault of the family; instead we, as healthcare providers, have yet to find an effective way to integrate what we know to be helpful into comprehensive care plans for people living with dementia.
So what is a care plan for living with dementia?
A competent plan would look at the medical, social and psychological needs of the patient as well as their caregiver. In terms of physical health, diagnosing a person with dementia is a chance to think about how to maximise the chances to delay loss of cognitive ability and function. Medication, cognitive stimulation as well as maintaining physical health and levels of activity all play a role here. The currently approved medications such as donepezil make a small but significant difference to the rate of loss of memory and thinking abilities. Also, patients taking these medications tend to stay independent for longer. Cognitive training through a variety of games has shown some benefit to thinking ability – a case for ‘use it or lose it’. Socially, the diagnosis of dementia raises a number of practical issues. An obvious example is that people with dementia typically struggle with their day-to-day function, ranging from complex activities such as managing finances to more basic ones like cooking, cleaning or even dressing. This raises the issue of social support measures which includes arranging for paid caregivers to take over some these daily tasks and trusted family members to be given power to manage the patient’s affairs (known as Power of Attorney, done through a solicitor). Furthermore, older patients tend to have physical health conditions which they may no longer be able to look after effectively (for example taking medication regularly or attending hospital appointments). A care plan that works for people living with dementia should therefore ensure that they don’t suffer unwarranted worsening in their physical health. Ways to address this can be to arrange for caregivers to remind patients to take their medication or to keep on top of their appointments.
Managing comorbid conditions
Controlling existing heart-related disease is also important to lower the risk of clots in the brain which may cause further cognitive decline. While physical exercise does not itself slow down the rate of cognitive decline, studies in dementia patients show it can improve general physical state and resilience.
Dealing with behaviorial issues
A critical issue experienced by virtually all patients in later stages of the disease are symptoms such as depression, psychosis (that is false beliefs or hallucinations) or agitation. These symptoms are distressing for the patients but also place a huge burden on their caregivers. Unfortunately, there is little that medications do to deal with these symptoms effectively. Instead, care that focuses on learning what causes problematic behaviours and changing the environment accordingly is thought to be the gold standard here. In addition, we know that being under-stimulated can be distressing for patients. Acting pro-actively by engaging the person with dementia in activities enjoyable to them pays off – music therapy, time spent with pets or in rooms set up to stimulate reminiscence can all be helpful depending on the person’s preferences.
Caring for the Caregiver
The fourth facet of care planning of dementia focuses on an oft neglected party – the caregivers of patients with dementia. Looking after someone with dementia often leads to physical and mental health problems. In fact, caring for dementia is the most demanding even when compared to looking after people with terminal illness or those who have been disabled through injury. Supporting caregivers through education, psychological therapies and peer support groups is crucial.
Do digital technologies have a role to play?
So how do we bring these benefits to more people living with dementia? In my view, digital technologies offer until now unavailable opportunity to monitor a patient’s physical and mental health, share data between medical and social teams and provide the means for caregivers to get useful information and practical support quickly. The time is right to seize this chance to rethink living with and caring for dementia.