20th April 2020, Dr Ryan Fuller
TRANSCRIPT FROM PODCAST
It’s important we are clear by what we mean by the term dementia.
Dementia refers to a complex, chronic brain condition, that typically occurs in people over the age of 60, where their daily functioning is significantly affected by short-term memory and other problems such as repetitiveness, word-finding and direction-finding problems. T PWD struggle to learn new information and may also have speech fluency problems, difficulty performing routines, problems with motivation, planning and decision-making. Decline in functioning is unfortunately progressive over several years and causes profound personal and family distress. As the disease progressives, patients go through recognizable stages: mild cognitive impairment (where there is minimal impairment and independent living) and then mild, moderate and severe stages. The moderate stage typically means a person is unsafe to drive a vehicle and needs assistance from family or a caregiver to ,for example, remember to take their medication, eats regular meals and attend to personal hygiene. Because of the toll on the family system and the financial cost of caregiving, most PWD in this moderate stage are in assisted or mid-care environments. Where families can not afford this, constant 24 hr family or domestic worker supervision is usually required. The severe stage needs frail or palliative / end-of-life placement for most cases because patients lose the ability to maintain their posture and become chair or bed-bound when feeding, personal hygiene, and managing incontinence with pressure ulcer, chest and urinary tract infections, becomes very challenging.
Although PWD have a shortened life span when most will pass away within 8 years of diagnosis, it’s not uncommon for PWD to live far longer with good care and to have a degree of quality of life.
Its important to note that we refer to a dementia syndrome, which means basically there are many conditions that present with a dementia picture.
In older people, potentially reversible causes of dementia include major depression, stressful life events such as moving property, financial crises, grief and medical conditions such as thyroid problems, anaemia, side effects of medication, chronic pain and rarely, some types of strokes and other neurological conditions.
We therefore need to rule out these potentially reversible conditions with a comprehensive assessment that includes a thorough medical history, physical examination, cognitive (or brain function) testing during an interview, relevant investigations (that may include a brain scan) and detailed collateral information from the family, before making a diagnosis.
By far, the commonest type of dementia is Alzheimer’s disease, which causes approx. 70-80% of cases. Vascular dementia, Frontotemporal dementia, Parkinson’s disease-related dementia, Lewy body dementia, and progressive neurological disorders make up the majority of the other cases in South Africa.
Unfortunately, we don’t really understand exactly what causes dementia, which means we currently don’t have any disease modifying treatment.
In this regard, people with dementia have a disease that is managed by controlling symptoms as much as possible. Similar to managing chronic lifestyle diseases such as diabetes or hypertension – where there is also no definitive cure. In this way, we attempt to slow down cognitive and physical deterioration, treat any associated mental health symptoms such as depression and anxiety and other distressing behavioral disturbances that can occur in up to 50 % of people with dementia during the course of the disease.
Because people living with dementia in the moderate and severe phases, need constant help for activities of daily living, there is unfortunately significant care burden on family or other carers. This often leads to caregiver burnout, where the carer is at risk for major depression themselves. For this reason, we also try and support caregivers through a multidisciplinary team that includes a social worker, clinical psychologist, occupational therapist, biokineticist and dietician. Managing dementia is, therefore, also about managing the patient’s family system. Pre & Post Diagnostic Counselling is very important for decision-makers through Care Planning that aims to improve the patient and family’s quality of life as much as possible.
How many South Africans have dementia?
There are not many studies that have looked at the prevalence of dementia in South Africa. Probably because of the need to focus on HIV Aids, child and maternal health, other infectious and lifestyle diseases common to developing countries. There is also lack of awareness, stigma and ageism or discriminating against someone solely on the basis of their age.
The global prevalence of dementia vary between 2 – 8% of people 60 years and older. The recent World Alzheimer’s Report estimated that there were 4.4 Million people over the age of 60 years living in South Africa with approximately 187 000 living with dementia.
However, there are probably far more. A recent large cross-sectional rural community study of low-income older people in the Eastern Cape, found the prevalence to be higher, between 8 and 11% for people 65 years and older. Given the prevalence tends to be higher in urban settings, this suggests at least 352 000 people, but more prevalence studies are needed.
People who live with dementia may have limited access to information about COVID-19 as well as limited understanding of preventive habits that keep them safe.
This is because of the degree of multimorbidity that older people often have. This means many people with dementia have problems with communication because of hearing or visual impairment and physical frailty. Dementia often causes dysphasia (or problems expressing speech and / or understanding speech). A major problem is that a person with dementia struggles to advocate or speak up for themselves and may not remember day-to-day information. Frequently, their sense of context (knowing the time and place) is impaired. This then causes confusion or disorientation. Most people with dementia in the moderate stages, will also have a superimposed delirium or an acute confusional state, commonly caused by medication problems, urine infections, substance problems or unstable medical problems such as poorly controlled blood pressure or diabetes.
Understanding the risks of COVID-19 is also not easy for most people because viral diseases are difficult to conceptualize, and in the case of COVID-19, certainly in South Africa, there are relatively few positive cases and fatalities. Evidence from Wuhan and Europe suggests that up to 50% of people with the virus may have no symptoms at all.
People with moderate to severe dementia typically have problems attending to personal hygiene because they forget to do so, may not remember how to or not feel like it. Some patients positively respond to tactile stimulation, while in others, they are extremely sensitive to encroachment of their personal space and do not like to be touched.
In many cases, there is a profound aversion to washing, showering or bathing that leads to challenging behavior when carers and staff try to prompt hygiene.
This reaction can range from mild distress, shouting, agitation and aggression to violent behavior if not carefully managed. In such patients, asking and insisting that they wash their hands can be very problematic.
The concept of social distancing is similarly challenging. Many patients lose their ability to recognize and respond to social cues and may be impulsive. Asking them to remember to keep their distance will many times not be possible. The problem is further complicated because mid-care and frail care settings do not typically have large spaces for patients to roam because they need constant supervision and there are constraints on the number of available carers.
Which dementia-related factors may increase a person’s risk of contracting COVID-19 – behaviors associated with the disease?
PW mild dementia are at risk of depression and social isolation. When family or carers visit, they may simply want social contact and tactile contact such as a handshake or hug. We are creatures of habit and people often revert to social norms during emotional encounters. PW are also more likely not to have access to personal protective equipment (PPE) such as masks or hand sanitizers.
PW moderate to severe D will struggle more with short-term memory and need daily prompting and reminders to sanitize their hands. They may struggle with perceptual disturbances , seeing or hearing people that are not visible to others – in essence, a type of hallucination. They may talk to themselves in response to these experiences. They may also wander or roam about without clear reasons. If this occurs in mid to late afternoons, we call this “sun-downing” or increased confusion with agitated behavior. Often, a PWD is “trying to go home” because they don’t know where they are and if there long term memory is more intact, they may try and return to their childhood home. Carers and staff are usually aware of this if it is typical of the PWD, but sometimes a previously stable PWD may exhibit his sun-downing for inexplicably for the first time. For these reasons, in general, afternoon interaction should mostly be about risk management to prevent unsafe wandering, intrusive behavior that may upset other resident, falls and accidents. Asking a PWD that’s sun-downing to wash their hands is likely to cause an aggressive response. They should first be settled as much as possible with reassurance, re-orientation and distraction.
What are the challenges that family caregivers of people with dementia face at this time and can extended family rally around a caregiver who lives with a person who has dementia?
The challenges family caregivers will face will therefore by managing personal hygiene, sundowning, maintaining social distancing but also supervising daily functioning and frequent hand washing. It’s unlikely a PWD will tolerate wearing a mask during close contact with others, but this should be attempted. At the very least, the carer should wear a visor or mask themselves and certainly be very aware of their own hand hygiene and daily risk, eg after shopping, discarding gloves carefully, leaving shoes outside, washing clothing, showering.
It’s really important to emphasize that all contact with a PWD from other family, even if they are caring and well-meaning, should be minimized as much as possible given the increased risk of death if a PWD becomes + with COVID-19. Family should rather call & where possible Skype or Zoom. Extended family’s main role should be supporting the primary family member who is caring for the PWD. In this regard, offering to do the shopping & other support on a regular basis is recommended.
Lack of support from care centers and lack of social interaction may also pose challenges.
Care centers should continue to provide daily structured stimulation activities depending on available resources, assuming the COVID-19 risk is suitably managed regarding reasonable social distancing.
At risk PWD include patients with cardiovascular disease (high blood pressure, diabetes, emphysema, strokes, thrombosis), history of cancer, frailty syndrome (difficulty transferring weight and walking) and polypharmacy (patients taking more than 5 different types of medication).
Care centers should be monitoring at risk patients twice daily to record their waking and evening temperature, blood pressure, pulse (heart rate beats per minute), respiratory rate (breaths per minute) and oxygen saturation. This serves as a means to detect if there is a potential new physical problem when the attending medical doctor will determine need for further assessment and treatment.
Care centers will need to isolate a patient that is positive for COVID-19 according to national requirements. This will be difficult for the PWD but they should continue to receive 1:1 care from staff with appropriate Personal Protective Equipment. The family should be contacted to agree with the attending doctor and matron the way forward regarding treatment and support options.
People may be separated from a loved one who has dementia and who lives in a care facility while under lockdown? What impact might this have on the loved one?
The Lock Down has been essential for care homes to reduce the mortality risk. Unfortunately, this has resulted in fewer visitors for PWD and has increased problems assoc. with social isolation such as depression, anxiety and agitation. Again, family should contact the relevant manager or matron to find out how best to support the facility.
This may involve brief phone calls at prearranged time for the PWD if such an intervention calms the PWD. Sometimes this can unsettle the patient more, so it’ important to carefully check with the treating team. It might be that dropping off a few meals or other provisions for the patient or, indeed the carer, may be very well received, especially if the carers are living-in because of the lock down. Certainly, making sure that the facility has any necessary medication is very important & may need family to arrange an updated prescription and delivery. Again, communicating with the matron and nurse in charge is very important.
Care givers may lack the ability to explain what is happening to the loved one – how should they explain it ?
PWD by definition, struggle to learn new information, especially information that is not easy to remember. In this regard, messages need to be clear, simple to grasp (to register and ideally understand) and recall. Sentences should be short and, where possible, combined with another sensory modality. In the same way we remember a rhyme more easily, especially if it’s easy to visualize and is humorous. I would definitely try a simple colorful picture of someone washing their hands & use simple expressive hand gestures such as a thumbs up.
Caregivers that are not family should be mindful of the patient’s ethnicity, preferred language, background, previous work role, personality strengths and weaknesses before dementia and any current sensory deficits. In this regard the Alzheimer’s “This is Me” leaflet is an excellent tool. (Available free on-line at Alzheimers.org.uk).
How should caregivers stay in touch with doctors and other support groups? Social connection is a key part of mental health?
There is no doubt that social connection is key for mental health. Caregivers should stay in regular contact with their caregiver support group by digital media such as Whatsapp or Facebook. If they are not part of a caregiver support group they should check with the Alzheimer’s Association or Dementia SA to find out how to make contact with local resources. They can also create their own support group. On-line resources are also available & offer support through international Alzheimer’s groups.
Caregivers should also make contact with their GP and relevant specialist doctors to find out what tele-health services they offer & if concerned, request an appointment to agree on a Care Plan. This should include a crisis contingency plan of what to do should the PWD become unwell.
It’s very important to know that older people and PWD have a right to care and treatment, but during COVID-19, admission should only be considered if the risk of not receiving effective hospital treatment is immediate and grave, and then only with prior agreement with the treating doctor.
In an emergency, caregivers need to be very clear where the PWD should be transferred to and by whom. However, this needs to be agreed beforehand with the matron, GP and treating specialists where the priority is to try and keep older people away from hospitals. There is a major risk of an older person getting COVID-19 from hospitals, other patients or health care staff.
What should families plan for if a primary care giver falls ill ?
Families must have a backup plan with another family member or caregiver on stand-bye. The priority must be to avoid unnecessary hospitalizations.
What tips are there for families to make things a bit easier?
It’s very important to have structure during the day, to rise at the same time and have a simple routine. Ideally, try and have at least 1 meal a day together. Always try & find some appropriate humor in the day, even if this is a warm smile. Remember, it’s the quality of care (not the quantity) that helps. Always be kind to yourself first by giving yourself a treat to look forward to when you take a break, and take a break – at least twice a day, mid-morning & mid-afternoon, ideally outside when you must walk at least once a day for 20 minutes. Safe walking is also essential for PWD assuming they don’t fall and are not too distressed.
If you have pets, don’t be afraid to engage the PWD with them as much as possible, assuming its safe to do so and best supervised.
People living with dementia may need extra or written reminders and support to conduct important hygienic practices from one day to the next, according to the Alzheimer’s Association. This could be placing signs in the bathroom and elsewhere to remind people with dementia to wash their hands with soap for 20 seconds. You can help by demonstrating thorough hand-washing yourself.
What is the advice going forward and for as long as we face the pandemic, when it comes to keeping people who have dementia safe and assisting family members to care for them?
Take this day-by-day. Make sure you have a crisis financial plan and improve your cash flow as much as possible. Most banks offer special COVID-19 loan relief. Check with SARS what tax relief is available. Share you concerns with trusted family or friends and once you have made a decision, act on that decision and then move on to another activity (dwelling on the problem will not help). By taking special action you will feel a bit more in control of your immediate circumstances.
Celebrate the weekends and make sure you do something different on a Saturday and Sunday to reduce monotony. Keep busy. Structure meaningful activity, e.g. learn something new from your bucket list if possible. Don’t watch too much TV and limit social media to trusted resources and calm friends and family. Remain in regular contact with the care center looking after your loved one and make sure that the agreed Care Plan and Crisis Contingency Plan is written down and that you have another family member, friend or professional helping you.
If you, or your loved one, experience depression, panic attacks, persistent insomnia, difficulty concentrating or other mental health problems, please do ask for help from your local GP or mental health care practitioners, many of whom offer affordable tele-health consultations and treatment.
Most all, stay calm. This too shall pass.