Dementia, Decision-Making and Planning Ahead
A recent report commissioned by Alzheimer’s Society, The Lived Experiences of Dementia 2025, highlights something many families already know from personal experience — dementia is not simply a medical condition. It affects confidence, independence, relationships and everyday life. More importantly, it often places enormous pressure on families who find themselves trying to help without clear authority or support.
The report surveyed more than 3,400 people affected by dementia across England, Wales and Northern Ireland and gives a sobering picture of the reality families face.
Dementia Affects More Than Memory
Many people living with dementia reported feeling anxious, confused and overwhelmed.
According to the report:
- 73% felt anxious or worried
- 53% felt confused
- 43% felt helpless
- 42% felt ashamed or stigmatised
These feelings are understandable. Dementia can gradually affect decision-making, finances, communication and daily living. Yet many people delay planning because the subject feels frightening or uncomfortable.
Unfortunately, delay can make matters harder.
Diagnosis Often Comes With Stress and Delay
The report found that only around three in ten people described the dementia diagnosis process as positive. Many experienced long waits, confusion and stress. More than half found the process stressful, and two in five said delays in diagnosis delayed the support they needed.
This is important because dementia planning works best while someone still has the mental capacity to make their own choices.
Once capacity is lost, options become far more limited.
Families Carry Much of the Responsibility
One of the clearest findings in the report is how heavily people with dementia rely on family and friends.
More than half of respondents said the person with dementia relied solely on friends or family for support. Many carers reported negative effects on their own lives, including reduced personal time and declining mental wellbeing.
Yet despite families carrying this responsibility, support systems can be difficult to navigate.
Only 31% said dementia social care support was easy to access, and almost half did not know who to contact if support was needed.
This raises an uncomfortable but important question:
If a loved one loses the ability to manage their finances or make decisions about care, who is legally able to help?
Why Lasting Powers of Attorney Matter
A Lasting Power of Attorney (LPA) allows you to choose trusted people to make decisions on your behalf if you become unable to do so yourself.
There are two types:
Property and Financial Affairs LPA
This allows someone you trust to help with matters such as banking, bills, pensions and property.
Health and Welfare LPA
This covers decisions about care, medical treatment and living arrangements if you can no longer decide yourself.
Without LPAs, families often assume they can automatically step in.
In reality, this is not always the case.
Banks, care providers and medical professionals may be unable to accept instructions from relatives unless proper legal authority exists. In many cases, families may need to apply to the Court of Protection — a process that can be slower, more expensive and more stressful at an already difficult time.
Planning Brings Reassurance
Interestingly, the report shows people do understand the value of planning and information.
Most respondents recognised benefits to receiving a diagnosis, including:
- receiving the right care (62%)
- being better informed (55%)
- planning for the future (54%)
- understanding symptoms (54%)
That same principle applies to LPAs.
An LPA is not about giving up control.
It is about keeping control — by making your own decisions now about who will help you later if help is ever needed.
A Difficult Conversation Worth Having
The Alzheimer’s Society report reminds us that dementia is still surrounded by fear and uncertainty. Many people avoid seeking help because they are scared, apprehensive or worried about what a diagnosis might mean.
But planning ahead can reduce uncertainty rather than increase it.
A Lasting Power of Attorney is one of the most practical steps available to protect both you and the people who care about you.
Because when decisions become difficult, it is far better to have a plan in place than to leave loved ones facing uncertainty alone.
To make or review a Lasting Power of Attorney, contact:
Stephen Pett CmpnSWW, AffSTEP, DMS
The Professional Will Writer
01323 766766
steve@theprofessionalwillwriter.co.uk
5 Malcolm Gardens, Polegate, BN26 6PN
Based on findings from The Lived Experiences of Dementia 2025 commissioned by Alzheimer’s Society.