How to support a loved one after a dementia diagnosis
Jonathan Hanbury, dementia specialist nurse and Founder of The Ness, experts in dementia and cognitive health – partners of Lilli
A dementia diagnosis can stir up a huge mix of emotions. I have seen first-hand how it can leave people feeling grief, uncertainty and, sometimes, relief that there is finally an answer. Getting clarity through a diagnosis can be an important step in helping you and your loved one access the right support.
Here's what I've learned from years of working alongside people living with dementia and the people who love them.
Give yourself permission to feel it
Supporting someone with dementia can be overwhelming and challenging. It’s important to remember you're allowed to feel sad, angry or scared.
Find at least one person such as a partner, a friend, or a community group who you can speak openly and honestly with. Carers who don't look after their own wellbeing tend to burn out faster, so make sure you continue to take time for yourself when you can and speak about your own thoughts and feelings with friends or family.
Learn about the diagnosis
Dementia is an umbrella term that encompasses multiple different diseases that all cause brain impairment. The most common 4 types of dementia are Alzheimer's disease, vascular dementia (or mixed dementia vascular & Alzheimer’s), Lewy body dementia, and frontotemporal dementia each of these 4 types behaves very differently. The progression, the symptoms, and the day-to-day experience can vary significantly depending on the type.
Ask the diagnosing team to explain exactly what has been found, and don't be afraid to ask questions more than once or write things down. Take someone with you to appointments if you can as this can help with sharing the load and retaining the information. Seek teaching in the community to understand this complex illness.
Diagnosis often occurs years into the disease.
Questions worth asking the memory clinic professionals:
- What symptoms should we expect to change? Knowing what's coming reduces panic when it arrives.
- Who in the community can help us? There should be key services in the community who will offer ongoing support.
- Is there any financial support? The dementia journey can be long and expensive and understanding some of the financial helps on offer is useful.
Support independence for as long as possible
When a loved one is diagnosed, there's a natural urge to take over. You want to protect them, to manage things and to plan ahead. But for the person with dementia, losing their independence prematurely can be really damaging to their confidence, mood, and sense of self.
If your loved one can still make their own cup of tea, let them make it, even if it takes a little bit longer. If they enjoy cooking, gardening, or doing their own shopping, find ways to support those activities rather than replace them. Purposeful activity helps with their cognitive function so these seemingly small activities can be impactful.
Routine is also great. A consistent daily structure can reduce anxiety and confusion and gives your loved one something predictable to anchor to.
Communicate differently, not less
Dementia affects language and processing, but it doesn't remove a person's desire or ability to connect. The way you communicate may need to gradually adapt, but meaningful connection is important at all stages of the disease.
Some practical things that genuinely help:
- They can no longer argue. Continuing to bicker, contradict or argue points is no longer possible and only causes upset. Go with the individual’s view.
- Slow down. Give more time between sentences. You don't need to rush to fill silences.
- Use names, not pronouns. "Would you like a biscuit, Mum?" rather than "Do you want one?"
- Speak in shorter sentences. Long, complex sentences can be hard to follow when word-processing is affected.
- Look for non-verbal cues. Facial expression, posture, and tone of voice often communicate things that words no longer can.
Think about the environment
The physical space someone lives in has a significant effect on how they function day to day. Small adjustments can make a meaningful difference:
- Good lighting reduces confusion, especially in the evenings
- Clear labels on cupboards and drawers support independence
- Reducing clutter lowers visual overwhelm
- Familiar objects and photographs can provide comfort and spark positive memories
- Removing trip hazards and adding grab rails can prevent falls before they become a crisis
- Use technology to your advantage. There are ways to use technology to maintain independence and safety.
You can start small and make changes gradually so they feel natural rather than like a big shift.
For your own peace of mind, you can also consider putting in discreet and non-intrusive monitoring technology to make sure things are ok and watch out for signs of health decline in deviations from their normal routines.
Build a network of support
The most important advice I offer families is build a network of support around you. This disease needs lots of people and the individual with dementia benefits from early varied support. Please don't wait until you're at breaking point to ask for help.
Dementia navigators, Admiral Nurses, memory cafés, specialist organisations like The Ness, carer support groups and online communities exist precisely for moments like this. A conversation with a dementia specialist early on, before things feel difficult, can help you prepare, plan, and feel far less alone.
However, neighbours, local good people, church groups, your cleaner anyone in your life can become part of your network offering support in small ways to give you strength.