Denise Eldemire-Shearer | Caring for loved ones living with dementia

Recently, dementia has been discussed in several fora. According to a Mona Ageing and Wellness Centre 2016 study, dementia affects approximately seven per cent of the Jamaican population, but this does not give the entire picture. Dementia rates increase with age, so the over eighty (30 per cent) has the highest rate, and as more females than males are in this age group due to longer life expectancy, more females are affected.

While any illness of a loved one can impact a family, the effect of dementia may be more debilitating as families struggle to stay connected with their loved one as they become more distant and as their personality and behaviour change. Spouses and siblings lose their best friend, children lose their mentor, and their support.

The demands on the caregiver are physical, mental, and emotional and change over time as the disease worsens. There are also the additional costs of long-term care, home care, legal and financial care, and providing supplies – diapers, incontinent pads, and other care necessities.

Looking after a loved one can lead to high levels of stress – Are you doing the right things? Are they comfortable? Why won’t they sleep through the night? - can cause anxiety, in some cases, unfortunately, shame and embarrassment. Do they need to go to a doctor? Persons living with dementia are often older persons so can have co-morbidities.

They can be afraid to leave the person alone - Will they turn on the stove? Will they wander off? It is a time of constant worry and anxiety. The mood swings of the loved one can be unpredictable and with little understanding that the caregiver is trying to protect them and comfort them.

Many caregivers do not have the time to maintain previous friendships and relationships, stop going to church, stop doing their health checks so becoming isolated.

EMOTIONS

Studies on the caregiving burden done by the Mona Ageing and Wellness Centre (UWI) have documented the emotions a caregiver goes through. Imagine the father or wife asking the child or spouse, Who are you? Or refusing to be bathed and/or be fed. It is very difficult in the moment to step back and remind yourself it is the disease not the person being unkind as the person needs love, empathy, and understanding.

Physical stress, the constant need for care and supervision as the loved one loses more and more physical capacity and ability to function independently, can lead to exhaustion and sleep deprivation. This, in turn, can affect the quality of the caregiver relationships with other family members, and many middle-age female caregivers have children in school or university and spouses.

An important aspect of caregiver stress is feelings of guilt and helplessness. Caregivers can feel powerless. Caregivers can feel inadequate and frustrated, feel they are not doing enough, but do not reach out for help and reassurance from other family members and friends.

Dementia caregiving has to be considered against the background of the demographic transition as population ageing is associated with smaller families and, therefore, fewer younger family members to provide support and care. Migration and technology have changed family dynamics. Families can be emotionally close, in daily contact, but physically miles apart so not available for twenty-four-hour care. There are also financial considerations as the majority of the current older population either do not have a pension or rely on the National Insurance Scheme.

MANAGEMENT

Caregiver stress is increasingly being recognised as a parallel concern of dementia management. Persons living with dementia increasingly need help firstly in making decisions but often resent needing the help. In the early stage, they are aware that something is not right but still value their independence. Helping caregivers to understand and to appreciate that no two days will be the same is important. Knowing what to expect and when can improve the caregiver’s ability to cope and handle the changes. Education of the caregiver is an important element of “the patient’s” management. In effect, a healthcare provider has two patients.

As the importance of the burden and cost of dementia to the health and social systems are recognised, the availability of appropriate educational programmes will be important. While there is a role for Government to provide such programmes, there is equally a role for civil society and non-governmental organisations, including churches.

Mental-health services are increasingly recognising caregiver stress and making counselling and hot lines available. As the population continues ageing, more will be needed.

The caregiver needs to take care of themselves to be able to take care of their loved one as a spouse once described caregiving as living for two.

FAMILY SUPPORTING FAMILY

As families travel down the long road of a family member with dementia, it is important for them to remember that the caregiver family member also has needs and reach out to them as well.

Give them a night off, a weekend break, a church night, show them you care. One often asks how the person is but not how you are.

OPTIONS FOR FAMILIES?

There are two considerations to this question: availability and affordability. While most persons try to help their loved one at home, it is not always possible, and options need to be considered. Home care is often the first option considered, but there are few structured home-care programmes to contact and pay for the necessary services, and they can be costly. Both the Ministry of Health and Wellness through community health aids and the Ministry of Labour and Social Security through home help aids offer limited services. As Jamaica recognises the importance of caring for an ageing population, this is an area for consideration and expansion by both the Government and the private sector.

Expansion of home healthcare will need a workforce supported by standards and regulations and appropriate legislation to facilitate inspections by appropriate persons. The second essential element will need to be standardised training programmes. Admittedly, there are many training programmes in the private sector, but the curricula are different.

More help services can be a great support to families, but families need to be assured that their loved one is receiving compassionate appropriate care.

HOMES

Not everyone can cope with being a caregiver, and homes for older persons is an area for expansion. Currently, many homes are for older persons with reduced function, but given the ageing of the population, the concept needs broadening. One can have homes offering several levels of care. Some older persons are relatively well but no longer want to live alone, or their children do not want them to, so Level 1 would be fairly independent living called assisted level care overseas.

Level 2 would offer more care, with activities of daily living but still some choice and independence, and Level 3 would offer nursing home care, including palliative and end-of- life care. Each level would have appropriate level staffing. Again, standards and regulations legislation and appropriate training programmes would underpin operation. Government operates 13 government-run facilities operating as Level 1 and 2 and have waiting lists, so more are needed. Again, there is the possibility for non-governmental organisations and the private sector to be involved. Unfortunately, homes are costly to operate, and this will always be a barrier.

As a country. more discussion around providing this kind of care as an option is needed. In the next few years, one in four persons will be in that age group. This begs the question, will there be enough family members available to offer care?

Dr Denise Eldemire-Shearer is professor emirita of UWI Mona Ageing and Wellness Centre. Send feedback to columns@gleanerjm.com.