What to Do in the Days After a Parent Is Diagnosed with Dementia

The appointment ends, you walk back to the car, and the word sits with you. Dementia. You may have suspected it for months. You may have been told it was something else entirely until now. Either way, hearing it confirmed is different, and the days that follow can feel overwhelming in a way that is hard to describe to anyone who has not been through it.

At Lidder Care, we talk to families at this exact point regularly. What we hear, more than almost anything else, is that people do not know where to start. There is a lot of information available about dementia as a condition, but very little that speaks directly to the practical question of what you actually do in the first week or two after a diagnosis.

The First Thing to Know: Most Decisions Can Wait

One of the most important things I want to say at the outset is that the days immediately after a diagnosis are not the time to make big decisions. You do not need to research care homes this week. You do not need to have a conversation with your parent about the future today. You do not need to tell every member of the family immediately.

What we see in families who navigate this period well is that they give themselves permission to absorb what has happened before they start acting on it. The instinct to do something, to fix it, to plan, is completely understandable. But dementia is a long journey, and most of what feels urgent in the first few days is not actually urgent.

The things that do need attention in the short term are much simpler than most people expect.

“Families often arrive at our door having already made a dozen decisions in a panic, some of which they later regret. The advice I find myself giving most often is to slow down. A diagnosis is the beginning of a process, not a deadline.”

Manjas Lidder, Director, Lidder Care

Step One: Go Back to the GP

The memory clinic or specialist who confirmed the diagnosis will have written to your parent’s GP. Make an appointment with the GP within the first week or two, not because there is anything urgent to discuss, but because the GP is now the central point of coordination for your parent’s care, and you want that relationship to be active rather than passive.

At this appointment, ask:

• What type of dementia has been diagnosed, and what does that mean in practical terms for progression?
• Is medication being considered, and what are the options?
• Will there be a follow-up appointment with the memory clinic, and how frequently?
• Is there a named care coordinator or Admiral Nurse attached to the practice?

If your parent is happy for you to be present at appointments, now is a good time to establish that clearly with the surgery. Some families find it helpful to ask to be added to the patient record as a next of kin contact so that communication is straightforward going forward.

In Nottinghamshire, families can also contact the Nottinghamshire Healthcare NHS Foundation Trust dementia service, which supports people living with dementia and their families across the county.

Step Two: Contact the Alzheimer’s Society

This is the one practical step we recommend to every family, regardless of where they are in the process. The Alzheimer’s Society has a national helpline, local support services, and dementia advisers who can talk through what a diagnosis means and what support is available in your area.

They are not a care home referral service. They are an information and support resource, and families consistently tell us that speaking to someone there helped them understand what they were dealing with in a way that a clinical appointment often does not.

In Nottinghamshire specifically, there are local Alzheimer’s Society services that can arrange face-to-face support and connect families with local dementia cafes and peer groups. These are worth knowing about even if you are not ready to engage with them yet.

Dementia UK also offers a specialist Admiral Nurse helpline, which is staffed by dementia nursing specialists. This is particularly useful if you have clinical questions that feel too detailed for a GP appointment.

Step Three: Have an Honest Conversation with Yourself About Capacity

Before you have any conversations with your parent about the future, it is worth being honest with yourself about one thing: how much does your parent currently understand about their situation, and how much capacity do they have to make decisions for themselves?

Capacity in dementia is not all-or-nothing. Someone can have capacity to make some decisions and not others. Someone can have capacity today and not in six months. The important point is that decisions made while someone has capacity, about finances, about care preferences, about what they want to happen in the future, carry significantly more legal and practical weight than decisions made for them after capacity has been lost.

This is why, if your parent does not already have a Lasting Power of Attorney in place, establishing one is one of the more time-sensitive things on this list. Not today. But soon.

An LPA for property and financial affairs allows you to manage finances if your parent loses capacity. An LPA for health and welfare allows you to make decisions about care and medical treatment. Both require that your parent currently has mental capacity to grant them. Waiting until capacity is clearly reduced means the window may have passed.

A solicitor with experience in elder law can arrange both documents relatively quickly. The Society of Trust and Estate Practitioners has a directory of qualified practitioners if you need to find someone local.

“The lasting power of attorney question is one we come back to more than almost any other with families. The families who have it in place find the practical side of care so much more straightforward. The families who do not often face significant difficulties at exactly the moments when they have least capacity to deal with them.”

Manjas Lidder, Director, Lidder Care

Step Four: Look at the Practical Arrangements at Home

In the short term, your parent is almost certainly still living at home. The question for the next few weeks and months is not where they will eventually live, but whether where they live now is working safely.

This does not require a major assessment. It requires a clear-eyed look at a few practical things.

Medication management. Is your parent taking their medication reliably? Many families first notice something is wrong when they realise prescriptions are not being collected or tablets are not being taken consistently. A blister pack dispensed by a pharmacy can help. So can a visiting carer who manages medication as part of a regular call. Our medication assistance service is something many families start with while they are working out what longer-term support looks like.

Mealtimes and nutrition. Is your parent eating regularly and managing food preparation safely? This is often the second thing that slips. A meal preparation visit from a home carer a few times a week can make a significant difference without changing the overall shape of someone’s life.

Getting out of the house. Social isolation accelerates cognitive decline in people with dementia. If your parent is getting out less, whether through reduced confidence, difficulty with transport, or changes in behaviour, this matters. Even a regular companionship visit from a familiar face can help maintain the rhythm and routine that supports wellbeing.

None of these require a big decision about the future. They are practical adjustments that most families find they can put in place relatively quickly, and which make the period ahead more manageable for everyone.

Step Five: Think About What Your Parent Would Want

This is the most personal step, and the one with no single right answer.

If your parent has expressed views about their care in the past, about whether they would want to stay at home, about what matters most to them in how they are looked after, now is a good time to make sure those views are recorded somewhere, even informally.

Some families have this conversation directly with their parent while capacity is still good. Others find it too difficult and work from what they know of the person. Both approaches are valid.

What we see, working with families across Mansfield and Nottinghamshire, is that the families who feel most at peace with the decisions they eventually make are the ones who can say with confidence that they were guided by what their parent would have wanted, not just by what was easiest or most immediately available.

If your parent is willing to talk about it, the Advance Care Planning framework from the NHS gives a structure for recording preferences that can be shared with GPs and care providers.

What Does Not Need to Happen Right Now

Because we see families put themselves under enormous pressure in the days after a diagnosis, it is worth being explicit about what you do not need to do yet.

You do not need to visit care homes this week. A diagnosis of dementia does not mean a move into care is imminent. Many people live at home with dementia for years with the right support in place. Visiting care homes before you have a clearer picture of how things progress is unlikely to help and may add to the anxiety you are already managing.

You do not need to tell everyone immediately. Take time to process this with the people closest to you before you feel any obligation to have the wider family conversation. That conversation will come, and it will go better when you have had a chance to get your own bearings first.

You do not need to have all the answers. Families who cope best with a dementia diagnosis are not the ones who have everything planned out. They are the ones who have a support network around them, know where to turn when questions arise, and give themselves permission to figure things out as they go.

“Something I think about a lot is that a diagnosis is not the end of anything. It is the beginning of a different kind of attention. The families who come through this period best are the ones who realise they do not have to do it alone.”

Manjas Lidder, Director, Lidder Care

How We Can Help

If your family is at this point and you want to talk through what support might look like, whether that is home care in the short term or understanding what our care homes offer for when the time comes, we are always happy to have that conversation without any pressure or obligation.

You can read more about our approach to dementia care at Newgate Lodge and Lowmoor, or find out more about Lidder Home Care and the support we offer to people living with dementia at home in Mansfield and the surrounding areas.

Our contact page has all the details, or you are welcome to call us directly. We understand that the conversations families need to have at this stage are not always straightforward, and we will always do our best to be useful rather than just informative.

Related reading:

• How dementia affects daily life
• Are dementia residents aware of their condition?
• Coping when a loved one with dementia no longer recognises you
• When should someone with dementia go into a care home?
• What is dementia care?