Options for Those Living with Advanced Dementia

Living at home with dementia; what are the options?

Many people live well with dementia, supported by family and friends with no formal social care, and continue like this for several years.  Some like to keep it this way because they can manage perfectly well, knowing what is best for them and their loved ones. But for some, a loved one living at home with dementia can be an overwhelming thought, especially if they aren’t aware of the care options available for support.

One of the main benefits of being cared for at home is being in familiar surroundings. This can give great comfort on those days when the person feels anxious or tearful – both of which are common emotions experienced by those with dementia. It could, therefore, be argued that aiming to live at home with dementia for as long as possible will give a ‘constant’ amongst the changes that will inevitably occur as the person’s memory lapses in and out, giving good days and bad days.

As dementia progresses, those around the person may benefit from – or require – a little more support. Sometimes, this can happen urgently. Navigating through the care options can be complex, especially when done under pressure and often in a haze of stress and confusion. Relatives may immediately think a nursing home is their only option. However, increased care at home can still be a viable alternative. Knowing your options in advance can be helpful. We explore two options further below:-

Pop-in safety & support checks at home

The person with dementia may live alone, have an elderly or frail partner, or have family members who still have to go to work each day and are therefore unable to help out as much as they would wish. In these instances, they may inevitably require additional help.

One of the first layers of support can be ‘pop-in’ or ‘safety’ visits. These involve a paid care worker visiting the property for short periods (around 30 minutes) up to 4 times per day to support with tasks such as helping to wash and dress, prepare food, or assist with medication. This level of input can work well in mild to moderate cases of dementia, particularly if there are no real concerns for the person’s safety. These visits can continue for years, and many domiciliary care agencies will provide this service.

This is often done in the manner the person so wishes, which we call ‘person-centred care’. There is no rushing about or strict regimes, just the giving of care and support that is tailored to the individual in the way they wish for it to be delivered.

When pop-in visits aren't enough

In the latter stages of dementia, some people can experience such confusion that they may wander and be a danger to themselves indoors or to members of the public when outdoors, i.e., crossing a road without looking. In these circumstances, they may require continuous support to prevent injury or another catastrophic event. At this point that relatives may think that a nursing home placement is their only option.

However, some organisations, like Aster Care, offer up to 24-hour care in blocks of hours that can give greater flexibility and complement existing care given by families. We can provide care for the entire day whilst a relative is at work or overnight to give the family carer a well-earned rest. This service does not always have to be booked seven days a week but can be used as a ‘respite’ session where pre-booked.

Other helpful points

Where care is delivered in longer periods (4-6 hour shifts), it gives the cared-for person greater continuity and helps them recognise the same people coming into their home. For example, a 24-hour care package is generally divided into 6-12 hour shifts and takes between 8-12 staff only to cover this period. Working in small teams enables meaningful relationships to build, which is highly beneficial to everyone concerned.