Introduction

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.

 

 

Case report

A 71-year-old retired postman of Asian origin presented to outpatient services with complaints of cognitive decline that started five years ago. The family reported that he was agitated with thoughts of wanting to hurt himself and he was referred to us. His wife and children were the primary caregivers and served as the chief sources of information.

At 65 years of age, the patient first presented cognitive decline with predominantly short-term memory deficits. He was unable to remember certain details of conversations.

Over the next few years he exhibited spatial disorientation, and had difficulty remembering certain places. He found himself lost on occasions. He had trouble recognising his sons and remembering their names. His speech became slow and hesitant. This gradually became disconnected according to family.

Using technology became cumbersome. He became apathetic and decision making got difficult.

At 69 years, due to the progression in his presentation the family took him to a neurologist. He underwent a CT of the brain (2019) which showed small vessel ischemia. A probable diagnosis of mixed dementia was confirmed. He was followed up and then started on donepezil for his cognitive symptoms.

At 70 years, a follow up CT  (September 2020) showed chronic small vessel infarctions in the frontal and parietal white matter. Cerebral atrophic changes were noted in the frontal and medial temporal lobes.

The patient presented with hypertension, dyslipidemia and mild aortic regurgitation. There was no alcohol or recreational drug history and he did not smoke. He had an unremarkable neuropsychomotor development. He did not report any hospital admission or surgeries. His older sister had a diagnosis of dementia although further details of this were not available. 

There was no history of abnormal involuntary movements, cranial nerve involvement, blurring of vision, sensory deficits, muscular weakness, tremors, bowel or bladder incontinence, or head injury. Underlying neurologic conditions were ruled out.

Results of complete blood count and coagulogram, biochemistry, renal, liver, and thyroid function tests, vitamin B12 levels, qualitative urine test, urine, and blood cultures and chest x-ray were all within normal limits. All other probable causes like delirium, pain and infection were ruled out.

On general examination, vitals were stable. Body mass index (BMI) was 22.9 kg/m2. On examination, the patient was cooperative, conscious, and responsive to commands. He was taking Deriphyllin, Atormac, Nebicard and donepezil 10mg once daily.

The patient evolved with difficulties in comprehension predominantly language deficits (aphasia). 

The family reported problems with attention and orientation. He was unable to express his thoughts well and his speech was disjointed. He was not able to follow the news update and headlines or use a mobile phone with all its features for  two years. In subsequent reviews there was deterioration in language, comprehension and attention. There was also difficulty noted with dressing and personal care. Multi tasking and problem solving became very difficult. He no longer helped his wife with chores at home. Problems were also reported with recognising and counting money.

He persisted with low mood and thoughts of self harm. He tried to push his wife on one occasion and exhibited aggression to her. The patient presented   reduced interest in previously enjoyed activities, reduction in multitasking and decision making. Sleep was reported to be disturbed for a few weeks.

Mirtazapine was initiated and titrated to 15mg once daily. The family felt they could manage him at home so weekly face-to-face reviews were arranged with daily telephone contact. Over the next few days sleep remained poor with increased confusion and restlessness at night. Donepezil was slowly discontinued and rivastigmine was initiated. Clonazepam 0.5mg once daily was initiated. The family kept a very close eye providing one to one care at all times based on advice given. At times he talked about death. He did not converse with his family and remained quiet.

Sleep disturbance was reported with thoughts of self harm and he described visual hallucinations and noises at night but none in the morning.

On review, the family reported that he appeared confused on waking up, tried to leave the house but responded to distraction. Disorientation and confusion appeared worst at night. Speech was reported as disjointed. He continued to have thoughts of self harm but there was no active intent. Hospital admission was suggested, but the family expressed wanting to keep him at home as they felt they could still manage him and worried of negative impacts from admission.

As a result closed supervision was provided to the family. Risperidone 0.25mg once daily was added and the dose of clonazepam was adjusted. He continued  to want to leave the house on waking up with the belief he was ready for work.

Thoughts of self harm and aggression reduced eventually. Sleep remained disturbed  with visual hallucinations. Talk about seeing men inside and outside the house remained. The family reported that he continued to attempt to leave the house on various occasions. His speech remained disconnected and repetitive, he did not recognise his children and was suspicious of wife. As there was no improvement rivastigmine was changed to memantine. His confusion was worse in the morning and he appeared to be distressed as money was missing and he became preoccupied with looking for it. 

Aggression was noted to be the worst in the morning. The family were advised to engage the patient in structured activities with their participation. They were advised to avoid situations leading to any altercation with the wife.

At the next review, the patient recognised his son but was unable to remember his name. He talked of his deceased parents and said they were well and alive. He spoke of how he had to get to work in the mornings and got agitated when this did not happen. Sleep was reported to be poor again. He did not respond to zolpidem. Mirtazapine was reduced and changed to trazodone. Aggression was reported to be worse by evening so clonazepam was changed to diazepam. 

Verbal and physical aggression was reported to have reduced. The family were able to engage him better in activities and continued to keep him on one to one supervision. Episodic agitation was reported which responded to distraction and medication.

Sleep slowly improved and there were no further psychotic symptoms reported. He was less confused and outbursts reduced. Episodic aggression was noted when there was a change in routine and on return home after a trip. When irritable he threatened to hurt himself. On occasions he did not recognise his house. He responded well to distraction and family felt they were able to manage him. He was able to engage in games with his children and grandchildren and he restarted small chores at home.

He continued to exhibit episodic aggression to his wife as he appeared to be suspicious of her. Benzodiazepines were slowly reduced and stopped. Sleep and appetite gradually improved over the next few weeks. Risperidone was eventually reduced and stopped. He tolerated this change well. Aggressive outbursts had reduced. He did not make any further attempts to leave the house. At times did not recognise his house but responded very well to family and distraction.

The family assisted by providing a calm, caring and familiar environment. With advice they were able to engage him gradually and manage his behavior. Other measures included taking him out for regular physical activity, ensuring noise reduction, distraction and care from family members.

He continues to maintain improvement. 

 

Conclusion

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. 

Discussion

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, Consultant Old Age, Psychiatrist Meitra Hospital, Edakkad Post, Calicut

Dr Manoj Rajagopal, Consultant Old Age Psychiatrist, Lancashire and South Cumbria NHS Foundation Trust


References

  1. 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
  2. World Health Organization International news , Dementia  Factsheet , 2020
  3. Brodarty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11(2): 217–228
  4. Hersh EC, Falzgraf S. Management of the behavioral and psychological symptoms of dementia. Clin Interv Aging. 2007; 2(4): 611–621