Dementia syndrome is a chronic and progressive illness that usually presents with deterioration in the cognitive function beyond what might be expected for normal ageing. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment.
One of the main differences from delirium would be that consciousness is not affected. The impairment in cognitive function can later be accompanied by non-cognitive symptoms such as deterioration in emotional control, social behavior, or motivation. This is the stage which many people as well as their families struggle to cope with and it is a frequent reason for presenting to emergency services.
A diagnosis of dementia is not often straightforward and can vary from person to person. Sometimes the presenting symptom may not be memory problems at all. The initial part would be to rule out other causes of memory problems including delirium, depression and various other physical illness.
What is the prevalence of dementia?
According to the World Health Organization 2020 factsheet, around 50 million people have dementia, with nearly 60% living in low and middle income countries. Every year, there are nearly 10 million new cases. The estimated proportion of the general population aged 60 and over with dementia at a given time is between 5-8%. The total number of people with dementia is projected to reach 82 million in 2030 and 152 in 2050. Much of this increase is attributable to the rising numbers of people with dementia living in low and middle income countries.2
Dementia is a major cause of disability and dependency among older people worldwide. It can be overwhelming, not only for the people who have it, but also for their carers and families. There is often a lack of awareness and understanding of dementia, resulting in stigmatization and barriers to diagnosis and care. The impact of dementia on carers, family and society at large can be physical, psychological, social and economic. Behavioral and psychological symptoms in dementia (BPSD) like verbal or physical aggression, agitation, wandering and sleep disturbances is now noted more commonly.1
Family plays a vital part in the life of a person with dementia. On one hand, the person with dementia looks to family for support, but on the other hand, they are usually the people who get the brunt of the behavioral effects from the person. Also the stigma and the lack of knowledge of dementia puts family in a difficult position of not knowing how to manage the person or dementia. Hence, it is very crucial that family members are involved from the early stages of the assessment and management. This not only improves their awareness of dementia, but also increases their understanding of dementia and why their loved one exhibits a different behavior.
Involving caregivers in management of care
Compared to the western world, many people in the developing world do still live as joint families or live in close contact and are able to provide more support. Hence, the majority of people with dementia live in the community with family and friends providing the bulk of care. Family caregivers of people with dementia are critical to the quality of life of the people with dementia. Therefore psychosocial interventions in close partnership with caregivers help in improving the quality of life of people with dementia.3
This can even prevent the unnecessary use of medications and any side effects associated with it. The following case study shows where active support from the family helped in managing behavioral and psychological symptoms of dementia thereby mitigating the need for hospital admission.
We have reported this case as the management of BPSD poses a challenge both to family and the treating team. Also increased awareness and education on dementia to the family made them more receptive to the diagnosis. The added support following this made a drastic change in the patient who needed very less medication.
More than 50% of people with dementia experience BPSD. It is distressing and is often a reason for placement by the family and caregivers.
At least half of patients attending outpatient clinics and 75% of patients in nursing homes have some sort of BPSD.4 This case highlights the need for awareness of dementia and BPSD. It confirms the joint working with family and service users throughout the treatment. The reassurance from family helps in quicker recovery. Caregiver training forms a vital part of the non pharmacologic management of BPSD. This also helps in improving caregiver wellbeing, which is vital.
As this case highlights the diagnosis of dementia and the resulting symptoms have a huge impact on family. Most of the time admission alone and pharmacological treatment is expected as the norm. This is understandable considering the huge responsibility and risks posed by the symptoms of dementia on the family and caregivers. Carer support by the treating team and psychoeducation at every step of the treatment process can have a tremendous consequence. As this can improve relationships and trust between the team and family with a compounding positive effect on the person with dementia.
Joint working, use of non-pharmacologic intervention with adequate medications can tide over the acute phase if the family or caregiver are in agreement. Hence, any management should be tailored to be person centered around the needs and known history of the person with dementia.
There is no clear-cut treatment plan and this has to be adapted based on the presentation in line with standard guidelines.
We should continue to improve the awareness of dementia and strive to improve the quality of life for the user and family after a diagnosis of dementia.
Dr Sheeba Ninan, Dr Manoj Rajagopal
- Zaudig M. A risk-benefit assessment of risperidone for the treatment of behavioral and psychological symptoms in dementia. Drug Saf. 2000; 23(3):183–95
- World Health Organization International news , Dementia Factsheet , 2020
- Brodarty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11(2): 217–228
- Hersh EC, Falzgraf S. Management of the behavioral and psychological symptoms of dementia. Clin Interv Aging. 2007; 2(4): 611–621