Living with dementia

Healthwatch Bolton undertook research on the experiences of people living with dementia and their families. They carried out 30 interviews involving 39 people and collected 144 comments from people with dementia, carers and family members across Bolton. Most participants were over the age of 70, and many described the significant emotional, practical and financial impact dementia had on family life. 

Many participants reported that obtaining a diagnosis could be a long and stressful process, often following several years of concerns about memory loss and behavioural changes. While services such as the Memory Assessment Service, dementia cafés, social workers and some care providers were highly praised, families frequently said they struggled to find clear information, understand available support and navigate the system. A recurring theme was that carers often felt left to manage on their own after diagnosis, with gaps in ongoing support and follow-up. 

Participants highlighted difficulties accessing suitable respite care, support groups and activities that people with dementia could attend without a family member. Concerns were also raised about dementia awareness among some healthcare staff, particularly in hospitals and A&E, inconsistent quality of home care, poor communication between services, and a lack of practical support for carers balancing work, health conditions and caring responsibilities. Many carers reported feeling isolated and said they needed more personalised guidance rather than being given large amounts of written information. 

Healthwatch Bolton concluded that dementia places substantial pressures on both individuals and their families and that more joined-up support is needed throughout the dementia journey. The report recommended improving dementia awareness and training across services, streamlining information and advice, increasing support for dementia cafés, befriending and community groups, exploring volunteer transport schemes, and developing greater peer support and volunteering opportunities for carers, including those whose caring role has come to an end.