Accessing appropriate support is absolutely crucial for individuals living with dementia and for the dedicated people who care for them, according to Victoria Lyons, a specialist dementia nurse at Dementia UK. She emphasises that organising a formal "care needs assessment" is the vital first step for anyone whose condition is impacting their daily life, safety, or independence.
Understanding the Care Needs Assessment Process
This essential assessment, which anyone affected is entitled to, serves to identify specific needs and determine the necessary support. It can be initiated by the individual themselves, a family member, or their GP. The process involves contacting the local authority, which will then arrange for a social services professional to conduct a home visit.
Following the identification of care needs, a financial assessment will be carried out. This involves detailed forms regarding the person's finances. A critical threshold exists: if the diagnosed individual has savings exceeding £23,250—excluding the value of their home—they will not qualify for any financial assistance from the local authority for their care needs.
While decisions should typically be communicated within four to six weeks, delays are not uncommon. Therefore, experts strongly advise organising the assessment at the earliest opportunity. Victoria Lyons adds a crucial reminder: 'Make sure this is reviewed at least every 12 months – sooner if there has been a significant change in the person's circumstances.'
Support for Carers and NHS Continuing Healthcare
Carers providing at least 35 hours of weekly support to someone receiving benefits like Attendance Allowance or Personal Independence Payment are also entitled to a carer's assessment for Carer's Allowance, currently valued at £83.80 per week. Eligibility requires earning less than £196 weekly after tax, and application is again made via the local authority.
Another significant avenue is NHS Continuing Healthcare (CHC). As Lauren Pates from Alzheimer's Society explains, CHC can cover the full cost of home care or a care home placement without means-testing, but only for those with complex, primarily health-focused needs. Eligibility is not based on a dementia diagnosis alone.
With around 80% of applications reportedly rejected in 2024, building a strong case with robust evidence—including care notes, medical reports, and a detailed diary of needs—is paramount. Applications are submitted via the local Integrated Care Board (ICB), and free, independent advice is available from the NHS England-funded social enterprise, Beacon.
Funded Nursing Care and Choosing a Care Home
If CHC eligibility is not met, individuals requiring nursing home care may qualify for Funded Nursing Care, a weekly contribution (currently £254.06 in England) towards nursing costs only, with remaining fees subject to means-tested social care.
For families considering residential care, the decision is profound. With approximately 70% of care home residents living with dementia, selecting the right environment is critical. Jo James, a dementia nurse at Imperial College Healthcare NHS Trust, advises involving the individual in the decision where possible.
Key considerations include checking the Care Quality Commission (CQC) rating, seeking out specialist dementia care homes designed with supportive features like clear colour-coding and simple layouts, and verifying staff training specifics. It is also vital to enquire about access to specialised equipment, family visitation policies, available therapies, and the home's approach to activities, palliative care, and end-of-life support.
Dementia remains the UK's biggest killer, affecting around 944,000 people. While there is no cure, early diagnosis and navigating these support systems effectively can help establish personalised care plans, providing crucial stability and quality of life for individuals and their families.
