As they reach the end of life, people who have been living with dementia or Alzheimer’s disease present specific challenges for those who care for them. While dementia is a gradual deterioration for many years, it is still a terminal disease. As with any other terminal disease it requires palliative care, which dementia patients will probably already have received even in early diagnosis, as well as end of life care. The difficulty in communicating makes caring for dementia sufferers increasingly challenging as they progress, which makes it all the more important for carers to keep a close eye on their loved one for signs of pain or discomfort.

There are a number of signs to look out for in your loved one, if they have dementia, that can indicate to you whether they are nearing the end of life. In the final two-to-three months, dementia patients may start to require an increase in hospital visits or admissions, their speech becomes limited to six words or less per day, have difficulty swallowing liquids or food, be unable to walk or sit upright without assistance, and experience incontinence. 

If your loved one experiences the following symptoms, they may be nearing their final weeks or days:

  • Arms, hands, and feet may be increasingly cold to the touch
  • Inability to swallow
  • Agitation or restlessness
  • Increasing amount of sleep or drifting in and out of consciousness
  • Changes in breathing pattern that includes shallow breaths or periods without breathing for seconds or up to a minute

What is end of life care?

End-of-life care is the term used to describe the support and medical care given during the time leading up to someone’s death. Many people live with multiple chronic illnesses and need care for a long time before their death, up to months even. It largely entails making that person as comfortable as possible in their final days, either by providing physical comfort, helping them manage their pain, breathing problems, as well as managing their mental and emotional needs. 

Susan Swanepoel, Estate Manager at Livewell Somerset West, describes how they provide end-of-life care for their residents, “Livewell focuses on maintaining a resident’s quality of life by relieving discomfort and/or distress, no matter the cause. We encourage family visits, and ensure that our residents receive nursing and caring with dignity until their final breath.”

The leading causes of death for dementia patients

There are many possible causes of death for someone who has late stage dementia, however according to a study into the cause of death in patients with dementia disorders the two most common causes of death were bronchopneumonia (38.4%) and ischaemic heart disease (23.1%). But it can also be conditions related to malnutrition, dehydration, and diabetes. 

Planning for end-of-life care 

Being prepared for your loved one’s eventual succumbing to the disease helps take the pressure off of those final weeks and days that you would rather be spending with your family. While your loved one can still effectively communicate, ensure that you find out what their wishes are for their own end-of-life care and other conditions they might have such as their Living Will, will, organ donation, funeral, cremation or burial, etc. This gives you time to sort out any legal and financial matters. 

Then you can focus on the type of care you would like your loved one to have. Some families are able to have their loved one at home towards the end, making use of hospice, carers, or taking on the role of the carer themselves. According to statistics, most families (46.9%) have their loved ones in a hospital when they die, 23.5% at home, 21.8% in a Care Home, and 5.7% at Hospice. 

Making the choice of where your loved one will be when it comes to end-of-life is a personal one that you and your family should make together, but that is also realistic to the situation. Susan Swanepoel offers this advice to families with aged loved ones who have dementia; “It is a very difficult decision to make, but usually when this difficult time is upon the family they are prepared, both mentally and physically. It can be very complicated to be a wife or husband or daughter AND the Caregiver. A support system needs to be in place, and not only for the ill but for you as the family member as well.”

Looking after someone with dementia full-time is incredibly difficult, especially if you have a family, job and life of your own. There are a lot of factors that you will need to take into consideration, and laying them out will help you decide what is best for your loved one and your family. Many families struggle with the decision of whether it is better to care for their loved one themselves or have them cared for in a dementia care facility, such as Livewell. When you do make your decision about what is best for your loved one, also make sure that it’s the best decision for your well-being as well. Caring can be intensive and frustrating without the proper support, which is why it is often best to have a loved one in the capable hands of a facility. This gives families the space to just be with their loved one as a child/sibling/partner towards the end, to try to enjoy the last few memories they are able to make rather than responsible for their health as well.