I often get asked “is it time for a care facility?” and the answer is not straight forward and it’s not up to me or another health professional. Unless the person experiencing dementia has become too unsafe to stay at home, either for their safety or the safety of others, professionals don’t make the decision, you do as their loved one, family and advocates.
Here are my top 5 key points to consider if you have begun to wonder if it’s time for a care facility.
The laws around mental capacity are likely to differ from country to country so always look into this locally but in general, if the person experiencing dementia still has the mental capacity to say“I do not want to move to a care facility”, then that’s it, you can’t make them. Only if the person lacks capacity could you move them to a care facility. You would of course always want to try and persuade them to go in some way, you do not want to forcefully take them there, professionals can help if your situation is complex.
One of the biggest tells if it is the right time to move a person to a care facility is, how are you coping as their main caregiver? Professionals can help implement care support at home to help alleviate pressure for you. They may also install what is referred to as Assistive Technology, devices and tech systems within the home to make living at home safer, examples include door sensors, fall alarms/mats. However, sometimes even when you’re using all of these supports it can still be unmanageable for you in the home. You need to achieve a work-life-care balance so that you don’t damage your own mental and physical health and other close relationships.
Always think about what their wishes are and if the current situation could have been foreseen. It is always better to discuss someone’s wishes with them in advance of them losing capacity, as early as possible in the diagnosis. Having these conversations is referred to as Advance Care Planning (ACP) and can help reduce guilt if and when the time comes.
One of the most important things most people don’t want as they age is to be a burden to their families. Most people would move to a care facility if it meant alleviating a burden to their family. I help families create an ACP that considers all scenarios, so it contains an option A, B and C.
To ensure the person receives the right care you need to find out if they require residential or nursing care.
The main difference here is the level of input, in a residential facility residents are still able to do a lot for themselves but do require some assistance and usually do not have nurses on-site, however, in a nursing facility the person usually requires a lot of hands-on care and assistance to do everyday tasks and have nurses onsite 24/7.
Other factors are considered too, like how much nurse-led intervention the person requires and if there are any complex behavioural psychological symptoms of dementia. Sheltered or supporting housing is another option, this is a person living independently in their own flat but with some extra support, however, it is often a step towards a full-time care facility.
Coping with feelings of guilt is a major factor for a family caregiver when looking at moving someone to a care facility. Usually, because promises have been made like “I’ll never put you in care” or they told you “never put me in care”. This relates back to ‘Their Wishes’ and ‘Burnout’ but you may need some support to help you process any guilt you may be carrying or feeling. Consider would they still not want to go if they could clearly understand the effect it is having on you and others? What the consequences of you continuing to care for them at home? It can sometimes come down to having to put yourself first, which again brings guilt.
I hope these basic pointers help you with your decision and what your next steps may be. I offer education courses on all these topics and more and I work with a small selection of people 1:1 to help them through tough keys areas, situations, and emotions. Look what help is out there locally to you, which are the key organisations, are their social media support groups you can join? Remember you are not alone in this, if you feel stressed out, overwhelmed, exhausted, it is time to reach out for more support!
I’m Debbie Callow the Dementia Coach, I’ve worked as a dementia specialist nurse for 8 years, primarily working with caregivers and now focusing on end of life care. I believe education is key to helping the world understand dementia.