Caring for Someone with Dementia in the Later Stages.

As a love one’s dementia progresses you may find it is becoming more and more difficult to support them and attend to all their needs.  Dementia can progress in many different ways, however, for those who begin to require support for all day to day activities and become at risk when being left alone, it is important to consider the options available. Check out our Guide To Elder Planning and Family meetings.

It can be very difficult making a decision about the long-term care needs of a loved one, particularly if you have been caring for them for some time.  However, it is important not to feel guilty or feel that you are letting that relative down, you are doing the best for that person to ensure their ongoing safety and care. Care options checklist is a good place to start. 

When is it time to make the decision to leave home? 

Care at home for as long as possible can be beneficial for someone with dementia as they will be remaining in a familiar environment which can be reassuring.  However, progression in dementia can cause behaviour’s which become difficult to manage at home: 
 

  • Eating and drinking: difficulties regulating hunger levels, poor memory to determine if they have eaten, difficulty being able to see a plate, bowl or cutlery can all contribute to reduced food intake and dehydration.   
  • Toileting: experiencing incontinence, difficulty recognising where the toilet is, frequent infections due to dehydration (which can increase levels of confusion further)faecal smearing 
  • Washing and dressing: unable to orientate clothes and place on independently, forgetting if they have put on fresh clothes, being unable to operate a shower or bath independently, being unable to regulate the water temperature when washing. 
  • Meal prep: being unable to operate kitchen machinery safety e.g. the cooker or microwave, eating raw or out of date food, forgetting that they are cooking food. 
  • Wanderingleaving the home with a lack of awareness of a destination or where they have come from.  This can be a very frightening experience for both your loved one and yourself. 
  • Night to day cycle:  This cycle can be disrupted with the person not knowing when it is night time or day time, resulting in an unmonitored activity. 

Social services can provide up to four calls a day and in some limited areas, night-time support can be provided.  However, the length of social services carer visits are limited and for family members providing support the time required can be overwhelming.  For loved ones who are beginning to require support throughout the day and night, and are becoming unsafe if someone is not present, should have consideration over where their needs can be met.  

Who makes the decision? 

This is dependent on whether your loved one has the capacity to make a decision.  Mental capacity is the term used when someone is able to weigh up and make an informed decision about their life.  When someone is in the later stages of dementia, they may not have the ability to make these decisions as they ‘lack capacity’.  In this instance, it would be down to their Power of Attorney to make that decision.  If there is no Power of Attorney it would be down to close relatives as well as health professionals to make a decision.   
 
What are the options? 

Live in care: For those who are able, a live-in carer will provide 24/7 care within a person's home.  This will allow your loved one to remain in their own home environment and receive 1:1 support. however, this type of care would need to be privately funded. 

Care home: Although it can take some time to adjust to new surroundings, a care home will offer peace of mind to the family as well as provide the 24/7 care a loved one with later stages of dementia will need.  It is important that the right nursing home is chosen for your loved one's needs, there are those that specialise in dementia care.  For those being funded or partially funded by the local authority or NHS, an assessment by social services will need to be completed.

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