Importance of Day-Care Centers in Dementia Care: A case Study From India.

The caregivers of persons living with dementia (PLwD) have to provide full-time caregiving to the individual, in addition to other responsibilities in their own life.[1] Providing care to a PLwD affects their quality of life[2] and mental health. In such a context, clinicians have to guide caregivers in decreasing caregiver's burden through appropriate referrals. Day-care centers can be one such service, which is illustrated with the support of a case here.

Mr. Y was a 71-year-old male, married for 30 years, an undergraduate, retired government employee, from upper-middle socioeconomic status from urban Bengaluru; the socioeconomic status was assessed using the modified Kuppuswamy socioeconomic scale.[3] He was presented with insidious onset and continuous course of symptoms such as aggression, difficulty in walking, slurring of speech, difficulty in using the words and forgetting the things. The symptoms were persistent for last 5 years with significant Biopsychosocial impairments. This case had been referred for psychosocial management to the team which comprised the authors of this paper. Intervention was provided and follow-up was done for a duration of 1 year. The patient was diagnosed with dementia, along with behavioral problems. Premorbidly, the person was rigid and had difficulty in trusting others. There was no significant past history of medical illness. The patient had been on treatment for 5 years before the consultation at the tertiary mental health-care facility, but he reported only mild improvement. He had taken divorce from his first wife due to her behavioral issues secondary to epilepsy. He remarried after 10 years of his separation from his first wife. Currently, he lives with his second wife and daughter. The second wife has psychosis and hearing impairment. His daughter was diagnosed with a migraine headache, which has been getting aggravated for the last 2 years due to the stress associated with caregiving.

Assessment of his family dynamics indicated that the family members were not able to perform culturally expected roles. Gradually, the daughter, who was 19 years old, became the decision-maker; although she was a 3rd-year undergraduate student and the family nominal and functional leader, multiplicities of roles performed by her affected the caregiving process. The family did not have adequate emotional, social, and financial resources to provide quality care. The family was facing a severe economic crisis to meet caregiving expenses, medications, and the daughter's education.

Considering the high caregiver burden and limited social support, the PLwD was referred to a local day-care center. In the follow-up, it was seen that the caregivers felt empowered to handle their demands of life more effectively.

As per the World Alzheimer Report 2019, caregivers have reported that the process of caregiving has led them to face setbacks in their health, work, and social life (52%, 49%, and 62%, respectively).[4] In India, an estimated 3.7 million people aged over 60 years have dementia;[5] this number is expected to double from the current 4.1 million by 2030.[6]

In developing countries like India, prominent primary caregivers are either spouses or adult children for the PLwD. Providing care to the PLwD involves both direct and indirect costs to manage the medical, social, and rehabilitation expenses. One of the high costs is the change in the routine of the primary caregiver. In this case, the primary caregiver was an unmarried young girl, who was performing multiple roles, which drained her, causing her to consider stopping her studies for her caregiving duties. It directly led to compromising the caregiving, which led to the worsening of the person's symptoms; the same is explained in Figure 1.

Figure 1

Conceptual map of the process of caregiving and its consequences

Many caregivers are not aware of the benefits of day-care centers. Such services can easily reduce the burden of caregivers during the day time as stated in Table 1. The day-care centers also empower the caregivers on how to look after the person at home. After admitting the person to the day-care center, the primary caregiver could continue her studies. As mentioned in Table 1, the caregiver gained more confidence and regained the quality of life.

Table 1

Caregiver’s burden before and after seeking services from day-care centers

Before seeking services from the day-care center	After seeking services from the day-care center
Primary caregiver decided to quit the studies and coaching for civil service job examination	Regained the confidence to rejoin the education and coaching classes
Impacted negatively on caregiver’s mental health	Learned to manage emotions
Low self-esteem and self-care	Enhanced the self-esteemImproved the self-care
Decreased social interaction and relationships	Maintaining and building relationships
Less time for caregiver’s self-care	Able to spend time on recreational and study-related activities
Inadequate social support	Getting support from the day-care center

The patient also acknowledged some positive changes such as being able to perform day-to-day activities in a structured way, improvement in self-care, better interpersonal relations, and improved interaction patterns with the family members. The patient appeared more relaxed and more cooperative with family members.

Government-funded day-care centers can act as an effective support center for PLwD and their families to ease caregiver's burden and enhance the quality of life among individuals and their family members.

Consent

Consent was taken from the patient's daughter and informed about the publication of the case. The confidentiality of the patient has been ensured.

Declaration of patient consent

The authors certify that they have obtained all appropriate patient consent forms. In the form, the patient's daughter has given her consent for images and other clinical information to be reported in the journal. The daughter understands that name and initials will not be published and due efforts will be made to conceal identity, but anonymity cannot be guaranteed.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.