Dementia care restrictions during coronavirus crisis

A number of factors combine to make caring for a person living with dementia, which is already difficult, even more so during the current COVID-19 virus pandemic. All the persons in the caring relationship are affected – the person living with dementia, who may not be able to understand the need for frequent, thorough handwashing; the lack of physical contact and isolation; the caregiver who may now feel the need to wear a mask and gloves; and the family members who most likely now have to be at home during times when they would normally be away from the stark realities of day-to-day dementia care. Or, they may have to take over as the caregiver is no longer able to come.

LIVING WITH DEMENTIA

However, acknowledging the changed circumstances is the first step to responding and applying the appropriate guidelines for the best care of persons living with dementia during the coronavirus crisis, to ensure their safety. And, it must always be remembered that the person living with dementia is already most likely vulnerable to coronavirus. Older adults, and people with pre-existing medical conditions (such as asthma, diabetes, heart disease) appear to be more vulnerable to becoming severely ill from the virus. Persons living with dementia are reported to have an average of two to eight additional chronic diseases (Mona Ageing & Wellness Centre & Jamaica Survey of Living Conditions, 2012). Consequently, they are at high risk of being infected by the virus.

Claire’s* mother Lilly* has Alzheimer’s disease, a type of dementia that affects Lilly’s memory, thinking, behaviour and emotions. Due to the COVID-19 pandemic, Claire now works from home. Lilly’s paid caregiver has started wearing a mask and gloves when interacting with Lilly. All these changes are unnerving for Lilly, who does not understand what is taking place. Lilly is agitated and feels threatened, so she is irritable and uncooperative because her caregiver is unrecognisable to her and her routine has been disrupted, as Claire is now home during the day.

SELF ISOLATE

Jennifer* had to find a new caregiver for her father, who also has Alzheimer’s disease. She had to make the decision because his previous caregiver has to self-isolate, having been in contact with a person diagnosed with the coronavirus. Jennifer’s father is having difficulty adjusting to the change; he paces, is uncooperative and antagonistic towards Jennifer and the new caregiver.

Persons living with dementia have difficulty adjusting to change, primarily because they have trouble expressing their discomfort and anxiety, and so their behaviours tend to be misinterpreted as aggression, anger, being uncooperative, and distrustful, resulting in the caregiver and family feeling even more frustrated and offended, thereby lashing out at them and ‘roughing them up’.

The coronavirus pandemic has changed how persons interact with each other. The reduction in physical contact, the heightened anxiety due to restricted movement, isolation, more and more people and communities under quarantine. To help persons living with dementia adjust to the precautionary measures required to stay safe during this time, caregivers and families should consider the following tips:

• Acknowledge that the experience is an emotional one for the persons living with dementia, and that this can lead to a change in their behaviour, for example, pacing, wandering, distrust, suspicion.

• Keep up to date with information from WHO and the Ministry of Health information about the virus. This is important because these are reliable sources. This information should be shared with the person living with dementia, using simple and clear language. Expect to repeat the information often.

• Demonstrate to the person living with dementia how to thoroughly wash his/her hands with soap and water for 20 seconds. As an alternative, ensure that adequate alcohol-based hand sanitiser is available. Additionally, consider putting the instructions in a jingle lasting 20 seconds, making it fun and at the same time getting the desired result.

• Play soothing music as this can be calming, especially when there is a change in the person’s routine or in the home-care arrangement.

• Pay attention to your own health and safety at the same time you are looking after the person living with dementia.

• If the person is going to be stuck indoors, try to find some innovative ways to keep them active and to do some light exercises, for example, seated exercises using a stable upright chair, preferably without arms, as the exercise base. The seated exercises can include turning the upper body from side to side, raising the heels and toes, raising the arms to the ceiling, making circles with the arms. The exercise routine should be between 10 to 15 minutes per day, or three to four times a week, depending on the person’s interest or capabilities. Make sure to get the doctor’s permission before starting any exercise programme with the person. Also, plan different activities to keep the person engaged, for example, reading, watching television, jigsaw puzzles, knitting, gardening, etc.

• Clean and disinfect objects and surfaces that are handled regularly, for example, remote, doorknobs, tables, countertops.

• Make sure to have the doctor’s number on hand in the event that medication is the only option to deal with the person’s behavioural or psychological symptoms.

Ultimately, the care of persons living with dementia will require a concerted effort with mental health specialists, counsellors, social workers, community support programmes, the state and society supporting caregivers and families.

*Names changed to protect privacy

Sandra Latibeaudiere is a lecturer and co-ordinator of the Social Work Unit, University of the West Indies, Mona, and director of programmes, Alzheimer’s Jamaica, which can be contacted by email at info@alzheimersjamaica.org. Visit our website at www.alzheimersjamaica.org.