Home care: An Option for Those Living with Advanced Dementia and their Families

Mdm S is a 90-year-old woman who has been living with dementia for the past 10 years. She was previously active and enjoyed sewing and cooking. She started becoming forgetful and mixing up recipes in the early stages of her dementia. Eventually, her daughter who lived with her took over cooking and managing the household tasks and finances. In recent years, Mdm S had started needing more and more help dressing and bathing. She has become incontinent and is on diapers day and night. She no longer informs her daughter when she has soiled her diapers. She has lost her ability to communicate although she occasionally says “yes” or “no” when spoken to. She needs help feeding and often keeps food in her mouth for a long time as if forgetting to swallow. This year she has been admitted to hospital three times for pneumonia. She has developed a bed sore recently as she has stopped walking and lies in bed for long periods. She developed another fever and her daughter has decided not to bring her to the hospital this time. Her daughter is at a loss as she is not medically trained and is uncertain how to care for mum at home.

When is enough, enough? This is a question I often grapple with. I see patients at home as part of my geriatric practice in the community. I opened a clinic in the heart of the kampung I grew up in, Kembangan. One of the reasons I chose to open a clinic in the neighbourhood was to keep older people out of hospital. There was one thing I knew for certain being a doctor attached to hospitals for the past 18 years, older people dislike hospitals. For some of them, the past year has been filled with time spent in hospitals. The time has come when enough, is enough. Enough days spent in emergency waiting rooms; enough nights in an unfamiliar hospital bed. They want to stay home.

Some of these people suffer from terminal illnesses that do not have a cure. Advanced dementia is one of these illnesses. In advanced dementia, a person may be dependent on others for all activities of daily living such as bathing, dressing, going to the toilet and feeding. This is the case of Mdm S. They have little awareness of their surroundings and limited means of communicating with others their wants and needs. They may suffer from bed sores, frequent infections and repeated hospital stays. It is at this point where palliative, or comfort care is an option. This concept of comfort care needs to be carefully explained to family members of people living with advanced dementia.  Of course, they want mum or dad to be comfortable. They do not want their loved ones to be in pain or discomfort.

For some of these families, comfort includes wanting their loved ones to receive care and pass away at home. “Enough” means enough time spent in a hospital bed. Family members then call us for a home visit. While “no more hospital” has been decided on, families are not sure what to expect when they call a doctor to the house. Sometimes there are feelings of guilt that they are depriving Mum of medical care in the hospital. They want to know what symptoms to expect at home and what treatment is available.

Taking a full medical history and doing an assessment is important. With the family, my nurse and I then come up with a plan of care based on the goals of care. This decision-making process is called advanced care planning. Points in a plan of care discussion include what interventions and treatments are to be offered. There may be limited investigations chosen with specific goals, possible active treatment like antibiotics and a plan for nutrition and hydration.

Once a decision is made to stay at home and a plan of care is in place, families are often relieved. They are empowered to know what to do and who to call in the event of deterioration. They know how to manage symptoms at the end of life like fever, pain or breathlessness. Learning how to care for their loved ones who may suddenly become bedbound are skills that need to be learnt. Our nurse then steps in to optimise the care. She teaches the family how to manage nutrition, feeds the patient without choking, looks after the skin to prevent bedsores, and cleans mouths well to prevent pneumonia among other things. Such care will prevent common complications which arise when the patient is unable to walk or care for himself.

The emotional burden and psychological stress that comes with caregiving, especially in a medical crisis, is heavy. At times, our psychologist offers therapy to distressed family members. Caregiving is often a task taken on by women who are juggling many different roles. I see more and more male caregivers in my practice. The needs of families are diverse. With the help of my team, I can tailor caregiving based on each family’s capabilities and limitations.

Terminal patients sometimes get better after an acute medical crisis. The fever resolves. The infection settles and they go back to a stable state until the next crisis. This is a good time to investigate medication management. The pharmacist in my team looks through the medication list and decides which medications are appropriate to continue and which to stop. As patients grow older and their needs change, their medications need to be tailored accordingly.

Caring for a person at home often with a terminal illness like dementia is a complex task that needs more than the doctor. I work closely with a team consisting of nurses, pharmacists and other allied healthcare professionals. As a team, we can support the family by providing comfortable care for the patient in their own home. In my experience, families who choose home care often feel that staying at home is in line with their goals of comfort care. When “enough” means “enough care”, they feel satisfied that they have tried their best to care for their loved ones in the comfort of their home.